I got some Rituxan and…..

    • Anonymous
      January 25, 2010 at 10:58 pm

      I got the first half of a full dose today.
      Tired from the long day.
      Left home around 7, returned at 4;30.
      It was cold at the center, duly noted by the
      folks there and the staff.
      Pemeds knocked me out for a couple hours while there.
      At Home ate a burger
      Turned up the heat and layed down on my heating pad
      Ah felt better when I got them ol bones warm
      The temp fell all day and its currently 33 degree at 10 pm
      Just for a bit, my whole body felt kinda tingley..
      Stomach felt kinda uneasy
      took another 2 hour nap.
      Hot chocolate and some water for fluids..

      Right now I’m rested and ready to Rock
      More of the same tomorrow..

    • Anonymous
      January 25, 2010 at 11:47 pm

      Would like to sleep, but can’t, took a pill. ๐Ÿ˜‰

      I got auth from the Insurance and got the see the doc, last thursday.
      Doc office called Friday and wanted to know how the auth got started etc, because we have been trying to get the drug since 06..
      Thats a long story, i’ll pass on it here.
      Today we waited 2 hours or so, until they got a contact with the insurance co on what they would pay… So after they were SurE they were going to get paid, the started the infusion. I guess They could tell by looking at us we couldn’t pay fer it..

      Just after the premds (30 min) and a few min into the rituxan drip, the iv butterfly blew (don’t have a port) I felt it, was painful, and after just a mins or so told the nurse.. Didn’t infiltrate much, and was told it doesn’t do damage to tissue. Puts some ice on it, took a 20 min break and started another iv. I put heat on it when I got home it itched at the blown spot..

    • Anonymous
      January 26, 2010 at 6:52 am

      [QUOTE=soapy]Would like to sleep, but can’t, took a pill. ๐Ÿ˜‰

      I got auth from the Insurance and got the see the doc, last thursday.
      Doc office called Friday and wanted to know how the auth got started etc, because we have been trying to get the drug since 06..
      Thats a long story, i’ll pass on it here.
      Today we waited 2 hours or so, until they got a contact with the insurance co on what they would pay… So after they were SurE they were going to get paid, the started the infusion. I guess They could tell by looking at us we couldn’t pay fer it..

      Just after the premds (30 min) and a few min into the rituxan drip, the iv butterfly blew (don’t have a port) I felt it, was painful, and after just a mins or so told the nurse.. Didn’t infiltrate much, and was told it doesn’t do damage to tissue. Puts some ice on it, took a 20 min break and started another iv. I put heat on it when I got home it itched at the blown spot..[/QUOTE]
      hi soapy

      How awful that they wait for the money! And nearly 4 years to get the meds !

      You dont need this when you are sick


    • Anonymous
      January 26, 2010 at 8:52 pm

      Got about 3 hours sleep. too many naps and too much predinsone.
      Found out today that I only got about 1/7 of the total first dose, to see how I reacted.
      Today it took about 3 hours for the rest.
      Came home, been catchin up on sleep.

      Stomach feels bloated, heartburn kinda.
      Was given a script for nausea, haven’t feel that way,
      and haven’t filled it yet.

      Constipated all day. Took a fiber pill early afternoon.

      On the edge of roid rage, so ask me nice please..
      Next infusion is a month away…

      I’ll post any major changes, how I feel, strength etc.


    • Anonymous
      January 27, 2010 at 5:15 pm

      Sick of this yet?
      I woke around 8, took my meds,
      and napped all day..
      Don’t feel sick anywhere, just tired
      Grumpy as an old bear.
      My bed was low on air,
      hope it doesn’t have a leak.
      Cable has been on the blink for
      over a week after upgrading to
      a new box with showtime..
      it worked about a week.
      In more important news,
      the fiber pill worked.
      Oh and if you made it this far,
      I felt weaker than yesterday this morning,
      but Stronger this afternoon..
      Dave, the weather woman said,
      a storm is coming to Music City, soon..

    • Anonymous
      January 27, 2010 at 5:17 pm

      also, I wuld like to give a shout out to ukguytemp, and all my Rowdy Friends.

    • Anonymous
      January 27, 2010 at 8:17 pm

      5 year old Select comfort bed has a leak.
      That means someone has to sleep upstairs.
      and for how long?
      Feeling better,
      I’ve always been a second shift man.
      Call them comfort boyz in the morning.
      Eat some butt fer breakfast..
      Get rid of some of this roid rage.
      that should be about over. Back
      to 20 mg pred a day.
      I do remember to apologize after a
      good grumpy spell..nowdayz
      Thank you lord for my wife,
      who puts up with and keeps up with
      my crap.


    • Anonymous
      January 27, 2010 at 10:00 pm

      Hi Soapy,
      I am at the end of my rope.
      Three of my doctors on my team have told me I am dieing.
      Three summers ago, 2 of the doctors told me I had about 2 years left.
      That’s when I went on Cytoxan.
      I have been on it for almost 3 years, and my neuro told me last spring, he thinks the Cytoxan added another 2 years.
      I had failed at the normal protocol of treatment for CIDP: IVIG, steroids, plasmaphereses, and immunosuppressants.
      Ah-but the Cytoxan come with it some bad side-effects–it’s just about wipe out my bone marrow.
      So, I had my last Cytoxin on 20JAN.
      Now my rheumatologist, (who was in charge of my chemo), in conjunction with a talk with my neuro, told me I have to stop Cytoxan.
      And onto the absolute last drug possible–Rituxan.
      They rushed through an appointment with an Oncologist–I see him tomorrow, 28JAN.
      I just read over the last 3 days, the 50-page post on Rituxin. I got a lot of questions for the doctor that I have been listing down.
      Is there anything you can suggest me to ask?
      Also-why did you only get a half of a dose?
      Can you fill me in on some stuff, (though I have been researching on Rituxin for the past week) ?

    • Anonymous
      January 27, 2010 at 10:19 pm

      My prayers are with you.
      They gave me just a bit the first day to see how I reacted.
      The rest was given the second day.
      The insurance co has approved 2 full doses, the next
      a month away to see how I respond. They are trying to cut
      the cost of IVIG.
      The Rituxan has worked for a couple of people local here in Middle TN.
      It took a long time to get it approved, and I think it was in the end, $.
      I pray your appointment goes well..


    • Anonymous
      January 28, 2010 at 5:25 pm

      Last night was good, up and about too much maybe..
      Legs were sore this morning. I have gained 6lbs in water
      the past 2 days… Drinkin mo tea, water, and took a water pill
      Other than that, feel ok.

      In other news.

      Waitin on the doc office to call somebody, about something…

      Got the parts ordered to repair the bed.
      Still will have to sleep in the floor for a couple weeks.. (j/K)

      Been playing the guitar.

      Got food and water, winter storm comin to music city
      so they say..

      Have a Blessed day,

    • Anonymous
      January 28, 2010 at 8:05 pm

      It really makes me sad to to read postings from americans who have to wait to get approval for treatments. How can health care proffesional put money over people’s health. I know this is not a political forum but my heart goes out to you. I am canadian and have never been denied any treatment that I have needed..I can not imagine having insurance and money issues along with health issues. When I was in a chair I was supplied with a power chair abd all the equipment I needed..as I am now low income none of this costs me a dime..even my meds are covered. I Hope and pray that one day every one will have such coverage and care..my heart goes out to you!!


    • Anonymous
      January 31, 2010 at 3:58 pm


      The last couple of days been pretty good.. Excess water is dissipating,
      feeling a bit stronger.

    • Anonymous
      January 31, 2010 at 4:49 pm

      Soapy, Ken,
      Strength to you both…though I feel you both probably naturally have much more fortitude than I.
      For most of your post Soapy it was like reading poetry, in the form which you were writing…
      Blessed be all

    • Anonymous
      February 1, 2010 at 8:48 pm

      I had alot of energy today. I burn’t it up cleaning Studio Dust.
      Finally got my new soundcard.
      sounds great!

    • Anonymous
      February 2, 2010 at 5:33 pm

      Up early today,
      Still getting the Studio Dust cleaned
      and hooked up.. Got the Keyboard /
      midi installed early morning.
      Had to take a nap early afternoon.
      When I woke up, I was still tired,
      but it feels like I have more ankle push.
      A bit sore here and there from pushin it
      the past 2 days..
      Today would have been an IVIG infusion day.
      I used to go 2 weeks apart on those
      Normally I would start feeling week, the next
      few days without it.
      So far, so good.
      Stomach is much better now that I am not
      taking Immuran.

    • Anonymous
      February 5, 2010 at 12:23 am

      Still feeling good, going to bed early the past
      couple days. Up early, but usually have to rest
      at some point during the day. Been busy
      debugging the new sound, and learning
      Logic Pro Software. Have a good day.


    • Anonymous
      February 6, 2010 at 8:33 pm

      I went today with a friend to guitar center. First time out since the Big R infusion. I felt like I got around pretty good. I would normally have had an IVIG infusion last tuesday, and usually would be feeling signs of weakness by the weekend without it. I feel that I am at least holding my own. I used my walker instead of my wheelchair, I feel like I am doing better in the stamina category. Bud Shootout coming on, I’m gone.
      peace to ya..

    • Anonymous
      February 7, 2010 at 11:17 pm

      another day, no change, that I notice.

    • Anonymous
      February 8, 2010 at 11:57 am

      Hi Soapy,
      I am watching you posts.
      I am in major discussions with my neuro about pros/cons of Rituxan,
      coming off of Cytoxan. The Cytoxan was slowing the progression,
      however, it was destroying my bone marrow after being on it for
      almost 3 years.
      So, most definitely, I am watching your posts–please keep it up,
      since they want to put me on the Rituxan, since this is the last
      drug there is for me to try.
      Thanks Soapy,

    • Anonymous
      February 8, 2010 at 3:26 pm

      Hi Soapy,
      Just wanted you to know I follow this thread.

    • Anonymous
      February 8, 2010 at 5:53 pm

      Thanks for all the support!
      Yesterday was full of stress, which we all know is no good.
      My little family is sick.
      What I believe related to the stress..
      Headache started last night, lasted till midday today.
      Stomach has been upset, but I take a calcium supplement once
      a week and sometimes that upsets the cart.
      Today a bit on the depressed side.
      My feet feel more numb than usual. that really bugs me..
      Legs are swollen more than they have been.
      Trying to take in more water, drink more green tea.
      Pedaled my floor bike a bit.
      Good news..
      it didn’t snow here music city.
      didn’t have to listen to the newscasters tootin peytons’ horn all day. ๐Ÿ˜‰

    • Anonymous
      February 9, 2010 at 8:46 am

      i have cidp since 2005 been on ivig since then every six weeks .a lot of musucle wasteing not to mention weakness.i just started on rituxan,so its a wait see situation

    • Anonymous
      February 9, 2010 at 7:24 pm

      Paddy ,
      Please keep us informed on how it goes with you.. thanks

      Lazy morning, slight headache all day,
      not bad, cutting back on the time looking at
      computer monitor. ๐Ÿ˜‰
      Feet are better, not near as numb.
      Swelling in my legs is down also..
      Pedaled my floor bike a bit, while
      watching Logic Pro tutorials.
      Snow missed Music City again,
      although we had about 2-3 inches last night
      it was warm and raining this morning and most of
      it was gone…..

    • Anonymous
      February 10, 2010 at 7:17 pm

      Today was good.
      Headache is gone.
      Swelling continues to improve.
      Sun came out for a bit..

      Hope it melted the snow where ur at..


    • Anonymous
      February 11, 2010 at 6:43 pm

      All is well today, holding my own.

    • Anonymous
      February 12, 2010 at 11:00 pm

      Slept late, took a benedryl last night and couldn’t shake the groggy ness this morning.
      Back to normal weight, lost that water finally.
      180 lbs of jelly…
      6’4″ tho , kinda skinny, except for this gut
      pedaling that bike as we type..
      have a good weekend

    • Anonymous
      February 13, 2010 at 9:45 pm

      up early, lots of energy, burnt it up.
      beat tonight..

    • Anonymous
      February 14, 2010 at 10:39 pm

      water weight gain is back, legs are a bit swollen.
      pedaled my bike, watched the race,
      have a good week.

    • Anonymous
      February 15, 2010 at 11:01 pm

      Blue Monday, made it thru.
      Swelling has gone down in my legs,
      Throats a bit sore, lack of humidity,
      maybe, 40% is all I can get out of my
      humidifier here recently. Had to turn
      it off today to Mix some music (makes a racket, er I mean noise)
      and it got pretty low on the humidity scale.
      thats all I got to say about that.

    • Anonymous
      February 16, 2010 at 3:52 pm

      Today it has been 4 weeks since my last IVIG infusion. Normally I got 40 grams every 2 weeks.
      In the past, I have tried to stretch it to 3 weeks, but
      I felt weak and would have to go back to the 2 week
      I’ve had some bad days, but I think it is safe to say
      that today, I feel as strong as I did a week or so ago.

    • February 16, 2010 at 4:06 pm

      That is awesome news!

    • Anonymous
      February 17, 2010 at 9:36 pm

      thanks for the support..!
      Felt strong today.
      Terrible day as my pet sugarglider I
      had for about 7 years passed yesterday.
      My heart is broken, I loved her so much.

      RIP Star baby.

    • February 18, 2010 at 12:44 am

      Sorry about Star Baby. Glad to hear you are feeling strong. Sounds like you are turning a corner this week!

    • Anonymous
      February 18, 2010 at 4:32 pm

      Slept late today. Walked and pedaled
      my bike so much yesterday, my legs
      and feet are sore today.
      Strength is good.
      thanks for the support Dawn.


    • Anonymous
      February 19, 2010 at 9:06 pm

      took advantage of the weather,
      got out in my wheelchair and
      went for a long ride around town.
      Strength was good up early,
      beat tonight.
      Have a good weekend

    • February 19, 2010 at 9:20 pm

      I read a post by Norb today, he included a picture of himself and Andrew. Andrew also took Rituxin. Norb seemed to be happily surprised, amazed at Andrew’s progress on the Rituxin. It sounds promising, I thought of you instantly!! I can’t find the thread, but maybe if you go to all posts by norb, you can pull it up! Have a nice weekend.

    • Anonymous
      February 20, 2010 at 1:53 pm

      Hi, the thread is here [url]http://www.gbs-cidp.org/forums/showthread.php?t=204[/url] but I saw you already found it.
      Andrew and Allaug are the ones who had success with Rituxan.

    • Anonymous
      February 20, 2010 at 5:32 pm

      Hey Norb,
      Long time.
      I read your website a few weeks ago..
      Havent’ been keeping up with this site all that much
      but I got some good help here, and wanted to let
      the rest know how the R goes with me.
      I haven’t heard from them in a while, but
      my doc said they are doing well, so thats
      2 more that are doing good on the R.
      I” read that link, thanks Norb

      and now,
      Dear Diary,
      Got up this morning all fired up, but after a bit and some
      exercise I was worn out.. Went back to bed
      for a bit, got up and started over again.
      More good weather and I been on the run.
      strength is still good, but my stamina has
      yet to catch up.. Even the 2 I know on the R
      have told me that, even tho they can get around
      good, that stamina was a problem , as they tire easily
      But I haven’t heard from them in quite a bit.
      I was in bed early last night, and I still feel like
      I haven’t caught up on my rest. But I been
      way more active the past few days. Back down
      to fighting weight, not retaining water as much.
      Best its been it days. Legs feel better, most of the
      soreness is gone..


    • Anonymous
      February 21, 2010 at 7:08 pm

      Very tired last night and this morning.
      In bed early and slept late.
      Took it easy today, got out for just a bit in the chair
      Lower back is a bit sore, so no pedaling today
      I did walk a bit.
      Strength seems good..
      Have a good week.

    • Anonymous
      February 21, 2010 at 7:28 pm

      as I call it now. At first? I’d stoke myself just to get bathed and dressed. Then, powernap! Then, go fix something to eat, then powernap. Then a repeat for lunch and, PN! And on and on. Now several years later? I can do each task in less than 5! Rather than 15-30! Learn your limits, then stretch them as you build up your strength thru PT [a must have in MHO] and go from there. Some things will come back easy, others? not so…but patience and persistence are key to success. Don’t ever give in to this stuff and SLAY THE CIDP DRAGON!
      Hope and hugs and faith and fortitude!

    • Anonymous
      February 22, 2010 at 9:53 pm

      thanks for the support…!
      Today was a good day tired in the am.
      walked and pedaled
      tomorrow is a big day
      got to hit it early

    • Anonymous
      February 23, 2010 at 6:30 pm

      Had the second R infusion today. One month since the first.
      Was told that R stays with you for 3 months.
      Going to try to get an approval for every 2 months
      with the insurance. Thats what they are doing with
      the other 2 local cdip ers.
      Didn’t sleep good last night
      Tired this afternoon..
      Took care to make sure my feet were propped
      up and didn’t hang off the infusion recliner like I
      did for 2 days last time.. plus wore sandals instead
      of shoes. Feet are still a bit more numb than this
      morning. Everything else is good.
      It has been 5 weeks now since my last IVIG infusion.
      From what I can find out, R is going to cost about half of
      what IVIG was yearly.

    • Anonymous
      February 24, 2010 at 6:00 pm

      Feet were less numb in the pm yesterday.
      back to normal today, whatever that is.
      Not much sleep last night. Had the munchies,
      ( prednisone) and ate too much, which didn’t help my stomach
      The pre meds include prednisone, kept me awake
      and gave me gas as it does sometimes.
      that and too much food.. (note to self)
      Felt rough this morning, all that gas and
      tired from lack of sleep. lots of belching and
      pressure in my stomach and chest.
      Felt weak this morning, harder to push
      up from a sitting position.
      Stayed in bed most of the day.
      Depressed and lonesome, really
      missing my pet. She was good for
      days like this..
      Stomach is better this afternoon,
      feeling stronger as the day rolls on by.
      Looking forward to a good evening and some
      sleep tonight.

    • Anonymous
      February 25, 2010 at 9:40 pm

      I felt weak in the a. m., but strength has improved as the day progressed.
      Legs and feet are numb this evening, and my legs don’t feel as strong as they did before the infusion. Pedaled a bit, afraid to overdo it right now.
      Mental status is much better. ๐Ÿ˜‰

    • Anonymous
      February 26, 2010 at 7:16 pm

      Morning was rough felt bad, and weak.
      worked on getting some fluids down all day.
      This evening is better, feel better, and stronger. Pedaled some.
      Seems it took a little longer to rebound from this round than the first one.
      Found out that I had approval for 2 more doses.
      So looks like I will be getting those once a week over the
      next 2 weeks. The plan is 2 weeks after the last dose, see
      the neuro, and do an evaluation on how I’m doing.. If it turns
      out to be helping, they will shoot for a dose every 2 months.
      Have a good weekend.

    • February 26, 2010 at 9:14 pm

      glad you are doing better!

    • Anonymous
      February 27, 2010 at 7:52 pm

      thanks for the support. ๐Ÿ˜‰
      Continue to feel better, lower back is a bit sore, from the pedals I think
      Had an easy day, didn’t do much, one short walk.

    • Anonymous
      February 28, 2010 at 11:59 pm

      much better today, getting some strength back.
      Was getting worried and stressed. Things are lookin
      up. I thank you for your prayers.
      have a good week. ๐Ÿ˜‰

    • Anonymous
      March 1, 2010 at 11:27 pm

      Back on track.
      Strength has rebounded.
      No leg swelling. (thats been ongoing for a bit before the R)
      Mental Status is very good.
      Got to remember not to panic the first few days after a dose.
      I almost stressed out and made it even worse over the past few days
      thank you zanax.

    • Anonymous
      March 2, 2010 at 7:29 pm

      today marks 6 weeks without IVIG.
      Not much change, I feel rested,
      no PT today for me.
      My legs had been a bit sore,
      but that is better also.

    • March 2, 2010 at 9:31 pm

      Glad you are doing well! BTW, are you pedaling on a stationary bike, or outside? If you are outside, that means your weather is nice and I am JEALOUS!! I don’t think the snow is ever going to leave here. It has that dirty ugly look to it now!! Keep pedaling, wherever it is you go1

    • Anonymous
      March 4, 2010 at 7:04 am

      I use a small floor pedal thang. Still inside but it is warming up a bit in Middle Tennseessee, supposed to be nice next week. thanks for the support.

      Almost got behind on my diairy, had a real good day yesterday, went and played some music and sang (haja) with my friend who just got a new PA, had to show him how its done. Didn’t sleep much last night, in bed at 1 up at 4:30. Too excited about today I suppose.
      Today is Infusion Number 3 of the Rituxan. Long Dayz those are.
      I will tell the doc, I’m holding my own strength wise, I don’t dare say I’m stronger…all though this week was stronger than last, I had a stronger reaction to last weeks infusion and lost some ground.
      Lookout Music City, here I come…

    • Anonymous
      March 4, 2010 at 9:52 pm

      I am trying to watch what I eat and drink this time.
      I had a light breakfast of a couple of cinnamon rolls.
      At the hospital , had a pack of cheese crackers.
      Drank a Root beer.
      Drank lots of fluids this morning and made several trips
      to RR during infusion.
      Home again, safe trip.
      ate some yogurt, water, and took a short nap
      Ate some yogurt and a couple crackers with peanut butter
      Took a benni dryl, and ate some anti-acid stuff.
      Took a prescription nausea pill.
      When I get the munchies, it will be yogurt this time,
      not everything in the house.

      Strength is good, kept my feet and legs under full support in the recliner today, and have no numbness or tingling in them tonight.

      Stomach is so so, a bit of gas, belching now and then.
      Will be taking a zanax, to help sleep later.
      Tired, but not sleepy, but it is a bit early and I had that nap.

    • March 4, 2010 at 11:19 pm

      Things sound good!!!Hope you wake up feeling good!

    • Anonymous
      March 5, 2010 at 11:41 pm

      It was a good day!
      worked on a guitar for
      about 4 hours tho,
      and my back is paying
      for it.. sheezh
      prolly overdid it, and will
      have nap all day tomorrow ๐Ÿ™‚

    • Anonymous
      March 7, 2010 at 1:49 am

      woke up early , felt better than expected.
      a busy day, did some chores finished working
      on my guitar. Was exhausted late in the day,
      went to sleep early, and woke up around midnight
      tired, ready to go finish the night.

    • Anonymous
      March 7, 2010 at 11:24 am

      Hi friend,
      I’ve been following your posts. I’ll pop in once in awhile just to let you know.

    • Anonymous
      March 7, 2010 at 6:58 pm

      Thanks Liz,
      today is my birthday,, ah,, 52…
      Strength is good today, best so far I think.
      It was a nice day, got out a bit.
      Thank you Lord for my blessings and
      another year..

      have a good week..

    • Anonymous
      March 7, 2010 at 8:44 pm


      I am a newcomer and have been following your thread, wish we could hear some of that music!!

    • Anonymous
      March 8, 2010 at 7:17 am

      Hi Shelly,
      Hope all is well, welcome !
      thanks for the birthday wishes. ๐Ÿ˜‰
      We have been working on some R&B Gospel tunes the past year.
      All the vocals where recorded here at my house. Some of the music
      was recorded at another basement studio in Nashville. We are waiting on a friend to finish the cd cover, thought we where done and then they wouldn’t take the adobe format.. I thought everyone used adobe?
      Anyway, they should be sent off for mastering the next week or so.
      When we get em back and I get permission, I promise to post some on youtube.

      Dear Diary,
      went to bed early last night, was beat.. No sleeping pill needed.
      This morning my face is sunburned and my strength is good.
      My legs actually feel lighter, you know what I mean…;)
      It has been a while since I’ve had that feeling.
      Supposed to be in the 60’s today in middle tn..
      sunny. Have to put on some sunblock today, because I plan on hittin it hard. look out day!


    • March 8, 2010 at 1:15 pm

      OK!!! Enough about the sun already! Did you really have to rub it in about the sun screen while we here in the midwest are looking at dirty black snow!!!! Just kidding, how nice to feel the sun I can’t wait. It is actually going to get up to 49 this week but with rain. Happy birthday! You will have to say where to go on you tube and I will have Kev show me. (yes, I am 44 and computer challenged!!) Glad to hear you are feeling strong! Enjoy the sun for both of us!

    • March 8, 2010 at 4:41 pm

      Hi Soapy,
      Happy Birthday!
      I’ve been following you. The best is yet to Be.

    • Anonymous
      March 8, 2010 at 9:04 pm

      my face is so sunburned tonight, I can’t eventype, ๐Ÿ˜‰
      nuff said.

      thanks for all the support…!

    • March 8, 2010 at 9:17 pm

      Well, at least you will be ok in the vit d department!!!

    • Anonymous
      March 9, 2010 at 3:36 pm

      today makes 7 weeks without IVIG.
      Had a headache all night from the sunburn.. suffer boy!
      Legs were also a bit swollen at bedtime, and I was beat.
      Had some numbness and tingles in the feet and legs.
      Still had trouble sleeping.
      Today, swelling is gone.
      feeling is much better in the legs
      Slept late, done some chores this afternoon.
      Strength is still good. ๐Ÿ˜‰

    • Anonymous
      March 10, 2010 at 3:52 pm

      Legs still had a bit of swelling this morning,
      but my weight is still holding the same.
      Been eating good.
      Took a midday break,
      propped my feet and legs up and been drinking green
      tea and water
      listened to some old rolling stones while on break…;)

      My foot push is noticeably better today, I’ve taken it pretty
      easy the past 2 days. Rested up, midday, if I had to fill out
      a survey right now…
      That stuff is working,
      Thank you, Thank you, Thank you……
      ๐Ÿ˜‰ ๐Ÿ˜‰ ๐Ÿ˜‰

    • Anonymous
      March 10, 2010 at 7:14 pm

      Soapy, I missed your birthday. Is the excuse that I’ve been busy since the 6th good enough, friend visiting, handyman doing work for me, getting papers together for IRS, etc. My fatigue can drain me.

    • Anonymous
      March 11, 2010 at 7:59 pm

      TY Liz !!

      Had my 4th thearpy Today.
      Cam home took a nap
      watching the tube tonight.
      Feel about the same, tired tho..

    • Anonymous
      March 12, 2010 at 8:58 pm

      Slept and Slept,
      Got up, finally
      stomach is a bit upset,
      lower back ached all night
      Did some chores and walked
      a bit in the afternoon.
      Propped my legs up to rest
      my back a couple times during
      the day.
      Legs are gettin lighter.

    • Anonymous
      March 13, 2010 at 11:45 pm

      Stomach is better
      Back is ok, tired from a long day.
      Some swelling in my legs tonight,
      Was out with a friend from noon
      until around 10 pm.
      Looked for a used martin guitar case
      around a few places.. no luck.

    • Anonymous
      March 14, 2010 at 8:30 pm

      Couldn’t get to sleep last night.
      last time I looked at the clock it
      was breaking daylight.
      Slept a bit in the am.
      swelling is gone, but legs and
      feet feel numb.
      Strength is good.
      Layed around and watched the tube
      most of the day.
      Have a good week..

    • Anonymous
      March 15, 2010 at 11:38 pm

      All is better,
      had a busy day,
      lower back is tired.
      numbness is gone.

    • Anonymous
      March 16, 2010 at 9:36 pm

      Today is my 8th week without IVIG.

    • Anonymous
      March 18, 2010 at 1:37 am

      Busy day,
      went to Blackbird Studios in Music City and
      picked up a nice usa deluxe telecaster.. sunburst.

      Feel pretty good, strength is good
      played guitar till my fingers hurt.

    • Anonymous
      March 19, 2010 at 8:03 am

      Walked some yesterday, it was nice out.
      A bit sore in the hips today.
      Strength is good this morning,
      up early. Got the master cd
      back on the gospel tunes.
      Sounds great. Will try to post
      one and some pics this weekend
      on you tube.

      Have a good weekened

    • March 19, 2010 at 8:33 am

      Hi! The weather is finally nice here to 70! Snow on SUnday though! Glad to hear you are walking around. Is there a difference in the way you feel w/the rituxan as opposed to the ivig when you took it? Enjoy the weekend!

    • Anonymous
      March 19, 2010 at 9:01 am

      IVIG made me feel rough for 2-3 days. I became allergic to it 5- 6 years ago after doing it for 11 or so years. So I had that downtime every 2 weeks. They took me off immuran, which gave me alot of stomach trouble. I feel much better overall and I am maintaining my strength if not gaining a bit.. ๐Ÿ˜‰ my energy level is more than my body can take right now.. Have to make myself rest and not overdo it.

      thanks for the support.


      While u wait on the other, here is my wifes nephew
      who stopped by Christmas on his way from Houston tx
      to Knoxville/oak ridge tn. and we made this
      for his granny. The audio don’t match the video, it was
      a different take.. It gets better as he does his own harmony.

    • Anonymous
      March 20, 2010 at 12:50 pm

      Let me rephrase that.
      I have more want to
      than I have energy and strength

      I walked/stood yesterday for a new record. Pushed it a bit

      paying for it today, tired, feel weak this morning.

      going to have to rest, me thinks.

    • Anonymous
      March 20, 2010 at 10:07 pm

      Managed to get in some walking a pedaling, even tho I was a bit tired,
      strength improved as it went.. Spent the afternoon trying to get a song with some pics up on youtube..soooooo

      Ha, big city studios, lookout.. a preview From the Soon to be Released CD, A Different Angle, the song I Been Changed. The vocals for this song were recorded and mixing for the CD was done here in my bedroom studio.. Thank you Lord for the strength to help us all do it..k


    • Anonymous
      March 21, 2010 at 10:24 pm

      worked it hard today,
      beat tonight..
      have a good week

    • Anonymous
      March 23, 2010 at 1:36 pm

      Today marks 9 weeks without IVIG.
      I been walking and exercising hard.
      Started using 2.5 lb ankle weights
      to strengthen my arms. I felt good
      this morning and could tell the
      effort is paying off. Neck is a bit
      sore from the weights.
      Stood up and walked around for more
      than an hour yesterday. another record
      I’m sure.
      Prayers go out to those that need it.

    • Anonymous
      March 25, 2010 at 6:18 pm

      Took it easy the past couple of days. I was very tired yesterday. I took a ride in my wheelchair and was asleep last night by 9.
      Today is better, pedaled a bit, no arm weights.
      Strength is still holding.

    • Anonymous
      March 25, 2010 at 6:52 pm

      Hi Soapy,
      I am due tomorrow all day, for my third infusion.
      I personally don’t think this chemo drug will help me, so I am calling it that I am on my “Coolaid” drug.
      I was on Cytoxan for 2 1/2 years, which slowed the progression of my CIDP, though it did not put it into remission. I finally had to go off the Cytoxan, as I was on it for so long, and it started doing damage to my kidneys and bone marrow.
      This is the very last drug they can try.
      But I had a meeting with a top neuro in the country 3 weeks ago. He told me that after 6 months, if the Rituxan didn’t do anything, he would then push for me to have stem cell transplant evaluation. But, he also said most likely all the damage that the CIDP has done to my body, which is ALOT since it hit my autonomic system, that most of it will be irreversible. NOT GOOD !!!

      They know I am dieing, so, perhaps the stem cell transplant might then put it into remission, and leave me then the way I am now, from what I am guessing he said by that remark.

      What is your view on this Rituxan. I failed at ALL other protocol of treatments, (steroids, IVIG, Plasmaphereses, immunosuppressants, Cytoxan), which is how I ended up with this final drug.
      How did YOU end up on this drug, and WHY?

      All the best,

    • Anonymous
      March 25, 2010 at 11:24 pm

      How did YOU end up on this drug, and WHY?

      I ‘ve had CIDP since 1998. Up thru 2001 or so I was in and out of ICU so many times I changed neuro’s on the suggestion of my regular md.
      I became allergic to the ivig around this time. The new neuro would let me go till I could not transfer to a wheelchair before the ivig.. worked out to 3 days of it every 5 or six weeks… miserable life and he stopped the ivig in 2005 and put me on immuran which didn’t do squat for me. In a short time I was bedridden and within a few months I was in the ICU again. When I got out of that and Rehab, around the end fo 2005-6, I found this site and found there was 2 people who live close to me on here… They were both on Rituxan. I met one of them and he could walk normal. ;;)
      I switched to their neuro and have spent the past few years appealing to the insurance for a try at Rituxan..
      Meanwhile he put me on ivig , one day every 2 weeks. I have gotten to the point I can get around the house using a walker..

      I was contacted by a company hired by my old employer, basically trying to save money on medical cost, at the end of 2009.. I told them about the Rituxan denials I had been thru, and that at the time looked like it would save money..
      They put the wheels in motion and I got approved to try the drug.
      So far, so good.

      Prayers are with you.

    • Anonymous
      March 25, 2010 at 11:59 pm

      I can think of 3 people that used to post on here. got Rituxan, and they have moved on with their busy lives.
      I hope one day you look around, poof, soapy’s to busy to post…to busy running races… footraces yeah thats the ticket..
      Nowdays I’m always waking or running in my dreams..
      or in my nightmares like the other night ,, homeless and scared of cats gettin me.. hehe

      and plasma exchange never worked for me,,, been there , done that

    • March 26, 2010 at 8:38 am

      Wowsoapy, I never knew that you have been through so much. Glad the Rituxan is helping you so much. You have certainly come a long way!!

    • Anonymous
      March 26, 2010 at 10:37 pm

      TY Dawn, and life goes on.. (coulda been a poet ๐Ÿ˜‰

      Visit to my GP today. walked, pedaled, and went at it hard this afternoon.
      Feel good tonight, not as tired as usual. Feet were a bit numb, after wearing shoes.. I’m going to have to try and wear them more often.
      It’s like changing the whole deal, walking with shoes..
      Turned the doc visit into fun. Found a box of mask in the waiting room,
      put one on, with sunglasses, and put up my hands like a gun…
      “let me in or Else” then i parked my chair so they hit it when they opened the door to call your name. every time i got hit i moaned that they had broken my leg.. then when they called my name I had my ipod playing and didn’t hear it.. when no one came i figured it was me, and I yelled to my wife that they had hit me with the door so many times i had gone deaf. baby we was goan be rich.. then I pulled the earphones out of my ear and said awwww never mind…the whole room exploded in laughter.. and
      you know they went back in that door and said, they some idiot in a wheelchair sitting right by the dam door..

      they hit me twice (wham!!!) before a male nurse ask me to move a bit on his way out to lunch. It was great… ;+1

      and after i was gone back, my wife, God bless her, said loud enough for all to hear,, I hope they get his meds right this time..
      now , thats funny, don’t care who u are…..

    • Anonymous
      March 27, 2010 at 11:15 pm

      Tired this morning,
      felt better in the afternoon.
      walked and exercised a bit.
      nice day out

    • Anonymous
      March 28, 2010 at 1:55 pm

      Strength continues to improve.
      I feel much better, and am doing
      more and more each day..
      Stamina seems to be improving,
      I didn’t feel so tired this morning,
      nor last night.
      Still, I do get tired…
      have a good week


    • Anonymous
      March 28, 2010 at 7:02 pm

      Good luck with the treatments Soapy. As you were mentioning, Rituxan worked for some people, including myself. But I fear that we are never really out of the woods. Will it come back? Who knows? I have only minor neuropathy in my feet now but I still get a weird feeling of numbness and the stocking and glove sensation at times and it is extremely difficult to gauge whether it is getting worse, or better or staying the same.
      My main thrust now is to get a quantitative measurement of IgM (or anti-MAG but that is a very expensive test).
      I will say one thing…I’ve learned as much about governments, insurance companies, pharmaceuticals and doctors to write a book.
      As an uncle of mine used to say…Bash on! Seems like a fitting expression,
      Take care

      I can think of 3 people that used to post on here. got Rituxan, and they have moved on with their busy lives.
      I hope one day you look around, poof, soapy’s to busy to post…to busy running races… footraces yeah thats the ticket..
      Nowdays I’m always waking or running in my dreams..
      or in my nightmares like the other night ,, homeless and scared of cats gettin me.. hehe

      and plasma exchange never worked for me,,, been there , done that

    • Anonymous
      March 28, 2010 at 10:31 pm

      Greetings Andrew, thanks for taking the time to post, and its great news also.
      I looked at your profile, so you haven’t had to have any Rituxan in a couple years ?
      I thinks fear goes with this disease, the mental aspect has been hard for me at times also.
      Also like you and some more post I have read, its hard to judge those sensations and rate them…lol
      what we need is a good Meter…lol measure it!!!

      I would like to mention something I haven’t. I am blessed in that I have always been comfortably numb (think pink floyd). I have never had pain with CIDP, other than sore muscles from exercising, and my lower back has given me some pain due to muscle weakness. Those back muscles have alot of catching up to do, strength wise. I’ve spent alot of time the past years in bed, a big cause of that.
      My heart goes out to those that do, I can’t imagine crawling in those kneepads, if you know what I mean. That question probably won’t be seen by many here, maybe I should start another thread about it..
      It seems I have read more good news about treatments, since I came back here to post my diary, .. Maybe they will get a good handle on it one of these days, especially since it seems to me to becoming more common..

      Sorry for being such a long post, happens when I’m excited, I talk alot,
      Learned how to type in High School, and can still do it pretty good these days..;)

      I see your wayyyy up north,, stay warm friend, summer is on the way.
      Wishing you the best!

    • Anonymous
      March 29, 2010 at 9:21 pm

      up early, a bit sore from exercise. Had visitors all afternoon into late evening.
      Didn’t get much exercise in, but I stood for long periods.
      Tired as heck tonight.
      But it was a good day.. ๐Ÿ˜‰

    • Anonymous
      March 31, 2010 at 8:01 pm

      Tuesday marked 10 weeks without IVIG..
      Today, got out and enjoyed the weather,
      took an afternoon nap.

    • Anonymous
      April 2, 2010 at 8:54 pm

      falling behind on my diary.. its the weather .. been out in that…
      So tired at night hard to remember to write
      didn’t sleep good last night.. so layed around in the am.
      went to little park down the street the past few days , in my powerchair.
      I take my guitar and practice , found a quiet spot..
      Some peeps stop by and listen while they eat their lunch…
      Then back home for lunch and a rest..
      it’s nice out tonight, i may go for a cruise
      strength is good, got my bike pedal up to one hour
      the past 4 days. Plus walking more..
      Happy Easter

    • Anonymous
      April 4, 2010 at 12:37 am

      up early, did some exercise,
      went to the park all afternoon,
      guy gave me a 42oz jug of green tea with honey,
      cause they listened to me play my guitar while they ate lunch..
      he was 77,,, lots of good stories he had to tell
      back home ate good, and exercised some more..
      Happy Easter sunday

    • Anonymous
      April 5, 2010 at 3:04 am

      Strength is good, but was tired so took a day off from pedaling.
      Got out for a bit.
      Having trouble sleeping tonight.

    • Anonymous
      April 5, 2010 at 10:58 pm

      Slow day, tired from a couple nights with no sleep.
      Bed warmer is back home, so maybe that won’t be a problem tonight..
      Didn’t do much, couldn’t get any naps in today, one thing after another.
      so tired I felt a bit weak, easily tired anyway.

    • Anonymous
      April 6, 2010 at 6:39 pm

      I’m like my neighbors cat who has adopted us. Eat and sleep, with a burst of chasing that rabbit..
      Slept last night and most of this morning..
      Been busy this afternoon. Strength is better with a bit o rest
      Temp was 88 here, so I been inside.
      Put some 10 lb weights on my mic stands .
      Checked out the difference in some mics
      trying to decide which sounds best on my voice
      good luck.


    • Anonymous
      April 8, 2010 at 12:06 am

      Mornings I am useless.
      Walked a bit the the pm.
      messed with the cat…
      Feel much better at night,
      all those years working those hours I suppose
      I think yesterday was 11 weeks without IVIG.
      Have to chk, I know its pushin 3 months..


    • Anonymous
      April 8, 2010 at 11:18 pm

      Strength seemed better today,
      walking is improving.
      trying not to to overdo it again..

    • Anonymous
      April 10, 2010 at 8:14 pm

      its been nice out, gettin some of it..

    • Anonymous
      April 11, 2010 at 8:29 pm

      The last couple days, I have started using a cane, instead of my walker for my trips around on my concrete driveway. Wife don’t like it, and if I stumble, will be due for some road rash.. I feel like I do better with the cane.. Walker has no wheels on the back, and makes such a noise..!! not the good kind.
      Have a good week..

    • Anonymous
      April 12, 2010 at 8:53 pm

      Just when you think you are tapped out? You can and DO find more strength!
      I am proud to know that you have soo much more than I do!
      Wishing you what little reserves I’ve got, electronically. Don’t know if it’ll help? But know that I’m trying to keep faith in LIFE as well as you are!

    • Anonymous
      April 12, 2010 at 10:43 pm

      thanks for the support!!
      Went hard today, beat//

    • Anonymous
      April 13, 2010 at 8:27 pm

      Did not sleep good last night, so took it easy today.
      plan on going to bed early, tired from it all.
      today marks 13 weeks without IVIG
      12 weeks since the first Rituxan infusion

    • Anonymous
      April 16, 2010 at 11:40 pm

      Falling behind again. ๐Ÿ˜‰
      strength is still holding.
      couldn’t get approval to get my power chair repaired, one of the motors was acting up.. Ongoing battle that has been going on for over a month.
      Finally it wouldn’t go. I spent the past 3 days workin on it and been tired at the end of the day.. Good news is I figured it out and fixed it.
      Got a cookout gig to play at tomorrow..
      Got an offer to play bass guitar for a band Memorial Day, but I don’t think I’m strong enough , in that is 3 hours away, and then would play a couple of hours.. I passed on that, but tomorrow is Free Food!!!
      Have a Good weekend.

    • Anonymous
      April 18, 2010 at 12:09 am

      Took it easy today, went to a cookout tonight.
      Hoped to play guitar, didn’t work out..
      I guess I’m gettin old,because the music is getting 2 loud.
      trying to save what hearing I have left.
      still Strong enough to ***** about it. ๐Ÿ˜‰
      thats always good.
      peace and strength to all…

    • Anonymous
      April 20, 2010 at 7:43 pm

      Tuesday is always the anniversary of something…
      I can’t remember what.
      So today, I pedaled longer and farther than I ever have
      Throat is sore, just about always red, from the pollen
      I hope. I noticed today that for once I had no bruises on my
      arm from bouncing off the doorways.. balance must be getting
      better. Using a cane most of the time, but not always in the house.

    • Anonymous
      April 22, 2010 at 1:15 pm

      Saw my Neuro today.. Was able to walk to the clinic with a cane.. First time, most there ever saw me walk.. Amazed that I was 6′ 4″ tall
      Going to start tapering off the predinsone tomorrow. Doc said his next show at Vanderbilt was going to be on CIDP and asked me if I would come and tell my story.. I said sure, but I got a B in public speaking….
      ps currently been on 20mg daily prednisone since early 2000.

    • Anonymous
      April 23, 2010 at 12:41 am

      Anyone have any tips on what to expect from the pred withdrawel? or something? anything hehe..

    • Anonymous
      April 23, 2010 at 10:46 am

      Hello friend,
      Don’t know how much I can help because it was eight years ago that I came off prednisone and the mind seems to put up a block on me so I don’t remember those things anymore. I do know that it didn’t work during the first try and I had to stay on pred. and when the second try was started my doctor withdrew me very slowly. It took almost a year before I was completely off. Prednisone caused me a lot of stomach problems and that became much better AND once I was off prednisone, I lost the moon face.

      My advice, if the first try doesn’t work, try again at a much slower pace.

    • Anonymous
      April 23, 2010 at 3:23 pm

      Ty Liz,

      First try is going to be 8 weeks.. starting today i went down to 15. there for two weeks. thats good news to hear that is helps your stomach.. mine is blah lots..
      I was tired this morning after showing off all day yesterday. then got more news so I was excited and didn’t get to sleep until late, so I read every think on could find on the net about the adrenal glands. Should have done it years ago, i have alot of those ailments it can cause when its out of wack
      The gospel cd’s arrived yesterday, so that is officially done. I put alot into it. I got credit on it.
      Technical Engineer : soapy… ha
      no it had my name and the “producer” my neighbor lol, has always called me kid.. so it says
      Technical Engineer : Kevin “KID” Langley
      I like that, white boy with a rapper nickname, on a black gospel cd, and I’m the only one with a cool nick..
      I was thanked again in another line
      it says

      Also, my sincere appreciation goes to the anointed singers and especially to Kevin ” Kid” Langley who engineered and allowed us to utilize every moment of his time.

      I am right proud, not ashamed for anyone to hear it.

      LIz if you need a good laugh go to you tube and do a search for Tim Hawkins, my favorite he does is Called OLD ROCK STAR SONGS
      you’ll bust a gut..

      When leaving vandy yesterday we ran into a couple who had lost their car in the parking garage.. My wife looked me and said “thats us in a few years”
      Have a good weekend..
      Peace and Strength to all.

    • Anonymous
      April 24, 2010 at 4:35 pm

      Didn’t sleep good last night,
      It has rained here all day, and I been catching up on my rest and sleep. body is sore and achy here and there..

    • Anonymous
      April 25, 2010 at 6:40 pm

      I am having a hard time during the morning into the evening.. Fatigue.
      Looks like I will have to cut back on the exercise a bit..
      Not going to be easy, dropping the prednisone.
      My body loves it..lol
      have a good week

    • Anonymous
      April 26, 2010 at 10:19 pm

      Felt better this morning, took a nap in the pm
      Haven’t done much exercise the past 2 days
      played guitar some and did hand exercises..

    • Anonymous
      April 27, 2010 at 11:47 pm

      slept late,
      light exercise,
      quit going so hard..

    • Anonymous
      April 28, 2010 at 12:32 am

      Great thread. Enjoyed reading it.
      Good sense of humor always a big plus.
      Glad ya doing so much better.

      I too have hit every door way and then wondered later why I had enormous bruises on my arms and legs and sides…..

    • Anonymous
      April 28, 2010 at 11:21 pm

      Ty for the support my friend.
      hope all is well with you, be blessed..

      Slept late again,
      had a good friend come over in the afternoon, played guitar,
      lots of BS. Grilled hamburgers, had a large time.
      Stood up alot, no exercise, tired tonight, had one glass of red wine.
      good enough excuse, good company..
      Neck and shoulders , well legs too, pretty tired.. I lifted arm weights a bit yesterday. I can tell I don’t have as much energy, strength, since I came down on the prednisone.. blah…
      I’m just trying to go with the flow, and do how I feel if ya know what I mean…
      neck is a bit stiff actually.. the wife says that is from getting lost and looking for the turn to our house… ha..

    • Anonymous
      May 1, 2010 at 1:51 pm

      Still feeling the effects of coming of the prednisone. Don’t feel as strong.
      Tired. Grumpy… ROAR!

    • Anonymous
      May 3, 2010 at 9:20 pm

      Feel about the same, some swelling in my legs and feet..
      lots of stress.
      Leak in the roof somewhere..
      large window is leaking also…
      at least the rain has stopped…

    • Anonymous
      May 4, 2010 at 9:48 pm

      swelling is some better,
      long day, tired,
      roof repair tomorrow, leaking around a vent.
      window peeps didn’t show..

    • Anonymous
      May 5, 2010 at 10:03 pm

      swelling is about the same.
      felt rough all day, stomach is blah
      roof man didn’t show.
      probably all connected to stress.

    • Anonymous
      May 6, 2010 at 10:58 pm

      Leg Swelling has continued to go down.. ankles still a bit swollen.
      got my roof taken care of. got the window caulked..
      getting warm during the day 87 today,, i think I am able to handle heat
      a little better this year.
      no pedal today, 2-3 days trouble sleeping, along with getting up early, I am beat… got a guitar to fool with tomorrow, traded for help with a new garbage disposal install
      Nashville is drying out.. so is my wall.. ๐Ÿ˜‰

      we got off lucky…

    • Anonymous
      May 7, 2010 at 10:18 pm

      Dropped the prednisone another 5 mg today, down to 10 daily for the next 2 weeks..
      Today was ok, will probably be able to tell it tomorrow.
      Been going long days, getting up early. Not sleeping good tho.

    • Anonymous
      May 8, 2010 at 9:17 pm

      didn’t sleep good last night,
      stomach is upset this afternoon.
      Pedaled some, tired from lack of sleep.
      Strength is holding.

    • Anonymous
      May 9, 2010 at 4:02 pm

      [QUOTE=soapy]Anyone have any tips on what to expect from the pred withdrawel? or something? anything hehe..[/QUOTE]

      I never had any issues with withdrawal. As long as it is tapered appropriately it should go fine.
      Good luck!

    • Anonymous
      May 9, 2010 at 4:38 pm

      Yeah! thats always good news…
      My stomach is still blah,
      but my legs felt good this morning.
      Arms are a bit tired from exercise.

    • Anonymous
      May 11, 2010 at 11:43 pm

      today was good, worked out some
      watched a bit of tv in the pm
      still moonfaced.. lol

    • Anonymous
      May 13, 2010 at 10:37 pm

      had my 5th Rituxan infusion today. 2 months since the last.
      managed to stay awake all day in spite of the bennie drill.
      super tired, hope I can sleep good tonight..
      wake up tomorrow a new man.. yeah…

    • Anonymous
      May 14, 2010 at 1:18 pm

      Hello Friend,
      I don’t pop in too often, but I’ve been following. I wish I remembered what I felt when I was withdrawing from prednisone, but my mind has put up a block, it just doesn’t want to allow me to remember. I do have a written record of the way I was withdrawn though and I do know it took almost a year to get me off. I had terrible stomach problems when on prednisone, heartburn, gerd, developed bleeding ulcers. But once the pred. stopped the stomach problems ended and the ulcers are easy to control.

    • Anonymous
      May 14, 2010 at 9:19 pm

      ty Liz,
      I hope all is well with you.
      maybe its best you don’t remember.. ๐Ÿ˜‰
      peace and strength to you.

    • Anonymous
      May 14, 2010 at 9:21 pm

      Dear Diary,
      Slept pretty good, got up, took meds and went back to sleep
      got up around noon..
      I feel weak and tired, like I could use more sleep.
      My feet are numb and tingley.
      Played the guitar a bit,
      pedaled about 20 min,
      going to bed early.
      don’t know what happened to the new man..

    • Anonymous
      May 16, 2010 at 10:38 pm

      Well I survived another round.
      I was tired yesterday, didn’t do much, played my guitar and pedaled just a bit. Today was much better, strength was better, felt pretty good.
      went to a friends house and had dinner, and played some guitar..
      Have a good week.

    • Anonymous
      May 17, 2010 at 9:50 pm

      Lazy day, didn’t do much,
      some swelling in the legs and feet..
      I been doing lots of fluids 2.. ;(

    • Anonymous
      May 19, 2010 at 8:00 am

      had inlaws for company overnight monday. I talked so much my throat is sore. lower back hurt last night from doing so much the past 2 days. Swelling in the legs and feet is better this morning.. slept like a log.
      my back still feels tired. Throat is some better..
      the case worker from the insurance co. called.. the rituxan is approved thru jan. no longer will be hearing from her, was told to call in jan, and make sure any request for an extension goes thru her.. she said normally they work 30-60 days on a case, and she had been talking to me for 6 months, so it was time to cut me loose. She was a big help, going to miss her calls. she was super nice..

    • Anonymous
      May 20, 2010 at 2:12 pm

      Throat and back is better.
      Still tired alot, been gettin up early,
      but have to take a break during the day.
      Energy level has been low, prednisone withdrawel?

    • Anonymous
      May 21, 2010 at 11:27 pm

      Dropped to 5 mg prednisone today.. busy day tired in the pm.
      have a good weekend

    • Anonymous
      May 22, 2010 at 11:50 pm

      lots of sore muscles from too much exercise on the upper body.
      tired early in the day.

    • Anonymous
      May 24, 2010 at 7:42 pm

      Have flu like symptoms today. temp is 99. was chilled last night and today with the room temp at 77 F. going to try and ride it out a bit before going to the doc. I’m hoping its the prednisone withdrawal

    • Anonymous
      May 25, 2010 at 8:03 pm

      woke up in the middle of the night, with severe lower back pain.
      took some over the counter pain stuff, put a heating pad on it.
      its better today, chills are gone, in bed most of the day, Finally beat myself to get up. Slight headache.
      did a few chores. Feel like death standing on the corner eatin life savers.

    • Anonymous
      May 26, 2010 at 10:18 pm

      feel rough still, got out a bit this afternoon.
      lack of food and the heat, was almost sick
      by the time I got home.
      whole body aches.
      come on adrenal glands…!!!

    • Anonymous
      May 27, 2010 at 10:52 pm

      laid low today, more of the same..
      legs hurt, took a long afternoon nap
      havent’ exercised much the past week.

    • Anonymous
      May 28, 2010 at 5:26 pm

      Just when you think its all over, something good happens.
      Today was one of the best days of my life. I was hit with
      blessings left and right..
      Be safe this weekend.
      peace and strength to ya.


    • Anonymous
      May 30, 2010 at 7:17 pm

      The rituxan can do a real number on you? But it is finite treatment. Do keep in mind that it will END!
      I truly appreciate your honest and candid reports. I may find myself having to decide what to ‘do’ next or still soon. More testing on the horizon [for CIDP status] next month, and likely the month after [you know how long tests take to get and then get results]. Often resulting in ‘muzzy’ answers or info on what to DO next. I hate muzzy!
      I can honestly say, I don’t now know which is the worse tests to await results for? Cancer or CIDP! I’m not an eager or happy camper about it? But, I know it’s got to be done….to justify where I am in CIDP progression [or not], whether treatments have worked [or not] and what to do next [again????].
      You are one of my secret Heroes! So keep up the good front? But if it gets bad? Know there are others here who care.

    • Anonymous
      June 2, 2010 at 7:49 pm

      homeagain, you are in my prayers, thanks for your support

      been a few days, still feeling bla..
      I looked at a guitar out of the flood in nashville. I must have rubbed my eye afterward without washing my hands, as I have an eye infection. So hot here, going out in the heat today
      made me weak and about sick.. slept all afternoon, but was up early trying to beat the heat..

    • Anonymous
      June 3, 2010 at 9:55 am


      I just wanted to say that I enjoy your posts. You write like a poet and tell it like it is. Thanks for your candor and good attitude!

    • Anonymous
      June 5, 2010 at 5:04 pm

      Thanks again for all the support! ๐Ÿ˜‰
      Yesterday was the first day without Predinsone.
      Early part of the day was ok, but was feeling sick
      around 3 pm.. Got worse as the day went.
      I finally went to sleep aroud 5 or so and slept the rest
      of the night. My whole body ached this morning, and I
      itch all over..I took 5mg of pred,, (every other day now)
      Feel better this afternoon. Been inside all day, it got hot
      early in music city.. which reminds me.
      I was down at the splash pad park wed, and a comment
      one of the employes made gave me a good hook for a song
      It was one of those heaven sent ones, I got it done in a couple
      of hours that afternoon. When I get to feeling better, I’ll try to
      record it and put it on you tube.. its a nice happy song,
      my best to date, according to those I played it 2.
      try and stay cool..

    • Anonymous
      June 6, 2010 at 7:04 pm

      whew! No pred today
      come on adrenal glands..
      Was sick at my stomach after I went to bed last night,
      I feel a bit better this afternoon, but am still very tired
      Have lost some ground on strength since I started
      tapering the pred. Hopefully it is just because of that
      and the fact I have been feeling so bad..
      I have noticed it takes about 4 days after each drop
      to start feeling I was going to make it.
      aches are not so bad today.
      movin on..

    • Anonymous
      June 8, 2010 at 10:34 pm

      Hanging in there.
      Eye is still bothering me.
      Almost out of antibiotics for it.
      Still sleeping more than usual
      haven’t exercised in a while. no extra energy

    • Anonymous
      June 12, 2010 at 6:48 pm

      Well my eye is better. thats the good news
      The bad news.
      Still suffering from fatigue, sleeping alot.
      No energy at all.
      I have gotten weaker, probably from so much time in bed
      another week of 5 mg pred every other day till I stop.
      come on adrenal glands..

    • Anonymous
      June 14, 2010 at 7:19 pm

      No prednisone today, so far I have managed to stay awake all day.
      Did a little work on an old guitar yesterday, but had a little bit of the p.
      Studio Dust is just that dusty..
      got to clean up tomorrow..
      2 more doses of prednisone, then we will see if I live. ๐Ÿ˜‰

    • Anonymous
      June 15, 2010 at 8:38 pm

      Pred day, it was a slow morning, up at 6, back to sleep from 10 till one.
      Stomach has been upset every time I eat today.. feel better tonight.
      Thur is the last dose. Been thinking about calling the GP and having bloodwork done fri to see whats up…
      See whats working and whats not…

    • Anonymous
      June 16, 2010 at 9:51 pm

      today was a good day. got out a bit early, managed to stay up all day,
      and all with no prednisone..
      tired tonight

    • Anonymous
      June 17, 2010 at 4:10 pm

      Wow! Sure has been a while since I have checked in here. I heard from Jackie about your progress, and she was gushing talking about you!

      I was in the chemo suite with Eric for his first treatment of Rituxan. He was in a chair, and I saw him last winter some time and he was walking fine ๐Ÿ™‚ no chair.

      I hope to meet up with you soon Soapy. If not there, then anywhere. I am not too far from you.

      Im stlll keeping on. Had tendon transfer surgery to help my left hand. Now after 13 long long years of not being able to play my guitar I was able to make a C chord again, and began playing. Hard to do any chording with 2 fingers, but I can play the solo to Hotel California with 2 fingers, but its nice to use the ring finger on occasion ๐Ÿ™‚
      I actually celebrated by buying a new custom Carvin CT6, and got into building some effects pedals for hobby with my kid.

      Anyhow, good luck bro and keep on doing what youre doing. Things move slow in our world, but when the sun shines its really bright and beautiful.

      Peace to you and yours. Oh and I want to also say thank god for Dr.Uskavitch, Jackie, Becca, and Dr. Cooper. You got lucky when you found them my friend.

    • Anonymous
      June 18, 2010 at 6:15 pm

      Had a good day yesterday, the last day of pred. Today has been rough,
      prolly overdid it..

    • Anonymous
      June 22, 2010 at 10:04 am

      I continue to feel a little better each day, having to stay inside because of the heat. I will be taking a break from posting for a few.. I’ve run out of things to say… I’ll be back next month after my next R infusion.

    • Anonymous
      June 22, 2010 at 10:08 am

      so I leave with this reminder..

      Life’s tough……it’s even tougher if you’re stupid.” — John Wayne

    • Anonymous
      June 22, 2010 at 7:57 pm

      Another great John Wayne quote:

      Reporter: Mr. Wayne is that real hair?

      JW: It sure is! Its not mine, but its real!

    • Anonymous
      June 23, 2010 at 11:23 pm

      It’s been a few days since the last dose of prednisone.. Saturday
      I’ve been itching like a crack addict the last 2 days..
      no energy.. weaker than I’ve been in awhile..


    • Anonymous
      July 6, 2010 at 8:45 pm

      Dear Diary,
      Been awhile, been a sick puppy. After stopping the prednisone,
      I have a rash on my arms, legs and splotches on my chest and back.
      I also had trouble taking a pee, so I suspected a UTI.
      I finally got in to see my GP on July 2nd. It had been 12 days with no Prednisone. He wanted to put me back on it, and taper off more slowly.
      I said I had sufffered this far and didn’t want to. By now the itching was unbearable and I was suffering from lack of rest and my mental attitude was pretty low. Confirmed the UTI. Got antibiotics for that. He gave me some antihistamines to combat the itching and rash. Since that the itching has improved some, with the help of aloe vera from walmart and the drugs.
      But, Sleeping 12 -16 hours a day. to date the rash has not improved, maybe some worse. Chills and fever in the pm almost every day. He said this could be the adrenal glands, and I could suffer from this for up to 8 weeks or so until they are working properly .
      Supposed the have another Rituxan infusion this week.
      If things don’t improve soon, I think I would rather do the Pred. to some extent. Strength is dropping fast, prolly due to so much time in bed.
      On the bright side the UTI is better.. so it seems.. zzzzzzzzz

    • Anonymous
      July 6, 2010 at 8:58 pm

      just to help me…
      Jun 19 last day of pred.
      diary noted itching on the 23 but had been ongoing…for a week or so

      the itching started intense at the end of the 5mg every other day.
      within a week after no pred the rash started.. it was almost 2 weeks before I got the the doc with it.. dam vacations.. lol
      note to self;
      intense itching will put you in the asylum very quick..

    • Anonymous
      July 10, 2010 at 10:13 pm

      had another infusion yesterday,
      weak, itching and depressed.
      hard to get up from a chair.
      can’t walk very far.

    • Anonymous
      July 13, 2010 at 12:58 pm

      Starting to get some strength back. Took alot of heat from the docs for letting the UTI go for too long. Go to a walk in clinic at the first sign of any infection. In one week I went from walking into the GP’s office, to not being able to push myself to a standing position. Early lab results show borderline symptoms of RA. That explains my stiff fingers I thought was from playing guitar. My left knees has also been bothering me a bit..
      Rash is still over the upper part of my body and the itiching is driving me crazy.. Everything it on hold for more lab work from friday, and then will be given a plan or and who else I may need to be seen by. From gp I heard maybe a rhuemotoligist sp? and a Dermatologist from the oncologist lab results are being faxed to and fro.. hopefully i can get some relief from this itching before I go nuts.
      over 3 weeks now with no prednisone.

      after 23 days without the pred, the neuro’s nurse called this afternoon and instructed me to start 10mg pred daily..

    • Anonymous
      July 16, 2010 at 6:13 pm

      A bit stronger on the pred. gettin up is still hard as heck.. double ck a the GP office today to make sure the UTI is completely gone. He told me the anti-biotics for that are known for making you weak.. i’ve lost alot of ground, but been there before.
      workin back will give me something to write about. ๐Ÿ˜‰
      2 docs agree i was taken off the prednisone too fast.
      still have a rash on my stomach and chest, itching.. yikes..

    • Anonymous
      July 16, 2010 at 11:09 pm

      Didn’t I tell you that you have to come off prednisone very slowly!!! My doctor did it so slow that it took a year with good results. The first attempt was being done too fast and doctor kept me on pred. until I could be withdrawn again. The first thing I noticed by looking at pictures of me was my moon face was gone.

    • Anonymous
      July 17, 2010 at 6:03 pm

      *sigh* my moon face was much gone.

    • Anonymous
      July 23, 2010 at 6:27 pm

      Got back to exercising the past few days. Overdid it of course and today is crash day. A bit stronger but not much. Still have a rash and itching.
      Haven’t been out in days because of the heat. holding steady, but not much improvement in strength. Doesn’t seem that the last R infusion did much, as far as improvement, but stronger than I was the past week.
      have a good weekend.

    • Anonymous
      July 25, 2010 at 6:35 pm

      feeling better , strength has improved since I took a break from exercising.

    • Anonymous
      July 28, 2010 at 4:01 pm

      Still have the 7 year itch, but the rash is a bit better.
      having a hard time sleeping. Strength is improving a bit.
      taking it easy on the exercise..

    • Anonymous
      August 3, 2010 at 9:05 pm

      My rash has gone, still suffering a bit from the itching, hope it goes away soon. Strength is no where close to what I was before I got sick after coming off the pred. I feel stronger some days , then weak the next. sigh
      holding on to what I have I think. ๐Ÿ˜‰
      exercising a bit, easy does it.

    • Anonymous
      August 7, 2010 at 2:33 pm

      been 4 weeks since last infusion, still on 10mg pred a day.
      strength is improving, been exercising on my bike 30 min a day.
      weight was pushing 190 a couple of months ago. I been eating
      low carb foods, and have gotten the weight down to 170.
      its all gut..;)
      1’m 6′ 4 so , skinny. well
      i think I’ll shoot for 160, maybe be a bit easier to move…
      feels like I’m starving, most of the time.
      itching is a bit better. not as grumpy as I have been

    • Anonymous
      August 14, 2010 at 7:57 pm

      Itching has finally gotten to where is not so bad, the last couple of days
      have been pretty itch free.
      Strength is a bit better, getting plenty of rest, and continue to pedal my floor bike pedals.
      Weight loss has just stopped.. Lost 15 lbs the last couple of months
      I am going to try some protein powder shakes starting today.
      started doing back exercises the past few days, tryin to help my lower back.
      need to start workin on my arms, they are weak.

    • Anonymous
      August 16, 2010 at 9:32 pm

      I have been able to pick up my exercise routine a bit.
      Itching is over, rash is gone. thank you Lord.
      Still on the low carb diet, and doing the extra protein.
      Strength is improving.

    • Anonymous
      August 23, 2010 at 7:53 pm

      Recovering from an eye infection and thrush.
      Got a B-12 shot while at the gp, gave me
      a good energy boost for a couple of days,
      and I burn’t it up on exercise.
      Strength is holding.
      Tired from 2 days of hard work.

    • Anonymous
      August 24, 2010 at 12:43 pm


      I am in a severe spiral with this disease. I am lucky in that I was in great shape with a lot of muscle throughout my body from competing in Power Lifting Competitions throughout my life, and playing football.
      I am in severe pain, and my balance is very bad. I have discovered a product called “Core Shorts” and it does help me with balance, and walking to some degree.
      I start Rituxan mid-September and am on PE to keep me going until then.
      Thanks for your story, it has given me some hope, but more so insight of what is to come.
      Thanks again

    • Anonymous
      September 6, 2010 at 9:32 pm

      I hope things go well for you.

      I have managed to stay pretty steady the past couple of weeks. Haven’t gained alot, but I have been exercising and getting out more, now that we have a break in temp. My current routine is get up early, get out and about the world outside until noon or so.. then food and an afternoon nap.
      Up and going until bed between 10 and midnight or so. Almost time for another infusion, looking forward to it, hopefully get a strength boost this time, since I seem to be feeling well and over everything..

    • Anonymous
      September 6, 2010 at 10:12 pm

      I hope things go well for you.

      I have managed to stay pretty steady the past couple of weeks. Haven’t gained alot, but I have been exercising and getting out more, now that we have a break in temp. My current routine is get up early, get out and about the world outside until noon or so.. then food and an afternoon nap.
      Up and going until bed between 10 and midnight or so. Almost time for another infusion, looking forward to it, hopefully get a strength boost this time, since I seem to be feeling well and over everything..

    • Anonymous
      September 18, 2010 at 4:52 pm

      A week has passed since my R infusion. It has been a good week, improved strength. Still living 2 days in one..
      yesterday got my lights back running on the power chair.
      Went to see an 80’s band in the park. Lights looked good coming home.

    • Anonymous
      September 19, 2010 at 11:07 am

      Hi Soapy,
      I do follow your posts, more so now because a friend I knew in New York is supposed to be starting rituxan. Tony is not on the forum. I’ve tried to get him to join but I think he doesn’t because typing and writing are really hard for him. He needs friends.
      Tony is very severely damaged by CIDP and I’m wondering if it will help him at all.

    • Anonymous
      October 12, 2010 at 1:17 pm

      [QUOTE=codystanley]Hi Soapy,
      I do follow your posts, more so now because a friend I knew in New York is supposed to be starting rituxan. Tony is not on the forum. I’ve tried to get him to join but I think he doesn’t because typing and writing are really hard for him. He needs friends.
      Tony is very severely damaged by CIDP and I’m wondering if it will help him at all.[/QUOTE]

      I’m damaged goods too.. ๐Ÿ˜‰ I’m getting stronger on it again, after a midsummer crash due to an illness.

      I been making the most of the recent weather, getting out in the morning and the evening. Got some cool lights for my hat, and I like to go to Walmart and dazzle the folks…
      It’s been a month since my last R infusion. I been gaining a bit of strength back I had lost.. ๐Ÿ˜‰
      Have a good day..

    • Anonymous
      November 11, 2010 at 9:43 am

      Had a Rituxan infusion last friday. I’m still improving, been walking more.
      Feel good all things considered.. Really picked up the exercise routine.

    • Anonymous
      November 11, 2010 at 1:28 pm

      [QUOTE=codystanley]Hi Soapy,
      I do follow your posts, more so now because a friend I knew in New York is supposed to be starting rituxan. Tony is not on the forum. I’ve tried to get him to join but I think he doesn’t because typing and writing are really hard for him. He needs friends.
      Tony is very severely damaged by CIDP and I’m wondering if it will help him at all.[/QUOTE]

      We all need friends! Especially here. Even if he doesn’t register & post, I hope he at least lurks. Do you know if he reads the forum?

    • Anonymous
      November 14, 2010 at 9:11 am

      Oh, Soapy, old friend! I’m so happy for your success so far with Rituxan, and so sad that I have missed out on your story through the summer! I seem to remember that you tried to contact me at some point, but it drowned in all the goings on of the summer. I haven’t been in here on the Forum for quite a long time, because I felt that I didn’t have much news to contribute, except for an occasional picture of my grandkids and a posting on one of the games now and then.

      Well, then – you never know do you? Now I went in to change my e-mail address and I stumbled upon your thread here. It’s been a long and hard and winding road for you (as for most of us), but you seem to be joining the lucky (unfortunately) few of us who have been saved by Rituxan. Welcome on board, pal. I have been in remission for five years by now, and nothing points in the wrong direction. Of course I’m “damaged goods” too, but on the average I have a “normal” life (whatever that is?). Sometimes, like yesterday (my birthday, btw) I overdid it, with 6 adults and two kids here for dinner and coffee, so to-day my body says “Please if you won’t stay IN bed, then lay at least ON the bed!”, but my mind is not willing to just lay there, so here I am by my computer spending energy I really don’t have, but enjoying what I’m doing immensely!

      To quote the (soon-to-be) ex-governator: “I’ll be back” and check in on you thread, Soapy!

      All the best from Norway and

    • Anonymous
      November 17, 2010 at 10:33 am

      Oh, Soapy, old friend!

      and I thought you had joined the rest of my ex’s.. ๐Ÿ˜‰

      1. Started taking B-12 shots. Looks like weekly for about 8 weeks, then monthly. John C told me he took one a month and it seemed to help..
      I swear by them. I can really tell I have mo go after one..

      2. Strength continues to improve.. I have started to work out on the health rider, and focused on being sore all over every day or so , trying to build muscle.. Still doing a protein shake daily. Weight is holding, been trying to get a little back, but so far not much luck.. Hopefully I will get it back in muscle.. *Flexes*

      Peace and strength to those not doing so well.


    • Anonymous
      November 17, 2010 at 6:13 pm

      In America, the poor, and low income people are covered by [B]Medicaid[/B]. This covers all expenses including medication. The wealthy people can afford to pay high insurance premiums and don’t have to worry about anything, and the elderly and those who are disabled have [B]Medicare[/B] which covers most or all medical costs but not all medications. It is the middle class citizens who suffer the most. They have their insurance provided by their employers- most of the time or they can purchase it on their own. There are hundreds of policies to choose from. And they can be very expensive. I am all for National Coverage- but not all Americans agree with that. In fact, the Republican Party is desparately fighting this. There’s both pro’s and con’s on both sides of a National Health Care Plan. What’s the answer? I don’t know. What I do know is that I am currently paying $1,200.00 per month for my medication for my CIDP.

    • Anonymous
      March 4, 2011 at 6:49 pm

      been on the Juice for a year now. I have had ups and downs. For the most part I am improved. I am recovering from a fall just before thanksgiving that left me bedridden for the most part of 2 months. So, I lost all I had gained and then some. I am slowly working hard to regain what I have lost.

      It looks like medicare has started paying for the infusion, but I have received letters saying approved, the next letter , denied.
      My secondary insurance approved it for me thru the end of this year,

      how time flies…


    • Anonymous
      March 24, 2011 at 5:05 pm

      Two weeks after the last infusion.. doing well. I was able to set some records and do some things I used to b unable to do.. Strength is doing better, and my back is improving.
      I am saddened to hear about the passing of Eric. He was on the drug Rituxian. John C could think of a couple more that he knew that passed that had taken Rituxian, but they were a bit older than early 50’s.

      If I die, make a note that Rituxian may be killing us…
      just sayin

    • Anonymous
      June 30, 2011 at 8:55 pm

      other than a couple of falls, a couple of sinus infections, I am maintaining ok on the R. I have been on it for over a year now. If not for the setbacks listed above I might be stronger

      I still use a walker, sometime a cane, but thats tricky.
      I think my stamina is better, I feel like I walk a bit more.
      I use a wheelchair for long distances.
      I don’t get out as much as I used to in my wheelchair.
      I became extremely paraniod the past few months,
      and was put on generic prozac, which has helped.
      I am still cautiously nervous. *looks over his shoulder* ๐Ÿ˜‰

    • Anonymous
      July 30, 2011 at 2:03 pm

      The R works for me. Better than IVIG, Plasma, immuran. Still on a small amount of Prednisone.. Been working hard, and walked half a mile yesterday with the walker on wheels. A new record! But it is not a cure I think, so I am looking into the SCT as my next step. peace.

    • Anonymous
      August 22, 2011 at 4:34 pm

      +1 for Rituxain. I saw the SCT Dream Team last week. The neruo said I didn’t need a SCT, because I was in Remission…
      about time , 12 years of h*ll .. I walked a mile this morning , just to celebrate..
      Keep the faith.

    • Anonymous
      August 22, 2011 at 4:40 pm

      [QUOTE=soapy]+1 for Rituxain. I saw the SCT Dream Team last week. The neruo said I didn’t need a SCT, because I was in Remission…
      about time , 12 years of h*ll .. I walked a mile this morning , just to celebrate..
      Keep the faith.

      Your rape whistle scared em off!!! Congrats on remission my friend! May it last forever ๐Ÿ™‚

    • Anonymous
      October 6, 2011 at 12:11 pm


      Still Improving 6 weeks after due date for last infusion. Had alot of numbness and tingling in my feet, but it is beginning to subside. Have been able to increase walking distance. Still on a walker, but have made it 1/2 mile with a cane on one occasion… still have the gait.
      peace and strength to ya.


    • Anonymous
      October 26, 2011 at 9:27 pm

      I think is was sharon who one day said to me. O!!! your the one with the Rituxan saga on the forum… I pray it has given hope and comfort to some of the many readers.. I guess it has to end somewhere. It appears, and I believe that it has put my CIDP in remission. NWU doctors agree. Me, I have to pinch myself to make sure it is not a dream… I feel pretty good, continue to improve with no Rutuxan in 4 months. That means I have missed 2 that I would have had at every other month.
      It has been a long time since 1998, and a rough road. Looking forward to the future.
      Please Keep the Faith, perhaps your remission is just around the corner, by whatever method God chooses.. God Bless

      THE END.

      Active CIDP, Jan 1998 until Summer 2011

    • Anonymous
      October 26, 2011 at 10:43 pm

      That is great news Soapy. God Bless you too.

    • Anonymous
      October 27, 2011 at 12:41 am

      Soapy- are you still out there? Just wondering how the Rituxan has helped you?

    • October 27, 2011 at 7:43 pm

      thanks for posting—I am sure if i start on rituxin i will read through your jourmal again during the process….great info. congratulations on your cidp remission. hope you continue to improve ๐Ÿ™‚ Lori