I got some Rituxan and…..

Would like to sleep, but can’t, took a pill. 😉

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..

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.

Peace.

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.
ROAR!!!
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..
peace

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

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.

peace
peace

Ken,
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..

Bless
Soapy

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,

Snowblind!

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

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

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.

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.

peace

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..

another day, no change, that I notice.

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. 😉

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. 😉
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…..

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

Hope it melted the snow where ur at..

peace

All is well today, holding my own.

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

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

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

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.

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
interval.
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.

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.

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.

Peace

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

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..

laters

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.

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

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.
yes!
From what I can find out, R is going to cost about half of
what IVIG was yearly.

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.

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. 😉

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.

thanks for the support. 😉
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.

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. 😉

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.

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.

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…

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.
Yes!

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.

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 🙂

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.

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..

Hi Shelly,
Hope all is well, welcome !
thanks for the birthday wishes. 😉
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!

peace

my face is so sunburned tonight, I can’t eventype, 😉
nuff said.

thanks for all the support…!

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. 😉

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……
😉 😉 😉

TY Liz !!

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

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.

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.

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..

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

Today is my 8th week without IVIG.

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

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

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

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.. 😉 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.

[url]http://www.youtube.com/watch?v=9jVKp9YrRYg[/url]

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.
Enjoy

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.

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

[url]http://www.youtube.com/watch?v=8apz_fEHNnE[/url]

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

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.
peace.

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.

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.
Peace

Ps.
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
*yawn*
…..
peace

TY Dawn, and life goes on.. (coulda been a poet 😉

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…..

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

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

peace

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!
peace

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.. 😉

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

wowosy
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..
kickass!
Happy Easter

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

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

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.

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.

peace

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..

peace

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

ditto,
its been nice out, gettin some of it..
Peace

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..

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

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

Falling behind again. 😉
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.

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. 😉
thats always good.
peace and strength to all…

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.
Peace

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….
peace
ps currently been on 20mg daily prednisone since early 2000.

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

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.

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..

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
peace
have a good week

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..

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

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..
peace

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

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…

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

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

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.. 😉

we got off lucky…
peace

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.

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

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

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

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…

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

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..
😉

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.
peace

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

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..

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?

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

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

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

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.

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…!!!

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

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.

soapy

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..

Thanks again for all the support! 😉
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..
peace

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..
peace

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

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..

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. 😉

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…
peace

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

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

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.
peace.
soapy

so I leave with this reminder..

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

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..

blah…

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

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..

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

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..

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. 😉
2 docs agree i was taken off the prednisone too fast.
still have a rash on my stomach and chest, itching.. yikes..
peace

*sigh* my moon face was much gone.

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.
peace

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

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..

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. 😉
exercising a bit, easy does it.
peace

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

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.
peace.

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.
peace

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.
peace

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..
peace

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..
peace

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.
yeah..

[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.. 😉 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.. 😉
Have a good day..
peace

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

Oh, Soapy, old friend!

and I thought you had joined the rest of my ex’s.. 😉

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.

S

Well,
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,
regardless.

how time flies…

peace

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
soapy

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* 😉

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.

+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.
soapy

hehe,

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.

soapy

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