ivig and prednisone combination

    • August 11, 2010 at 8:15 pm

      have been having ivig for 1 year to treat cidp which is from vgkc antibodies–recently began a trial of prednisone with the ivig—looking for others experience with prednisone–am only 6 days into it but i swear i feel weaker not stronger as the plan–today???? does it start off that way–i know its so hard to tell because we have good and bad days. Told myself i would give it a month to determine if it is going to work–i just hope it doesnt make things worse. appreciate any feedback or personal experiences youve had with it. Lori

    • Anonymous
      August 12, 2010 at 1:15 pm

      My daughter was put on steroids & IVIG 4 years ago. She was on them for 2 months. She too got worse. She went from relapsing every 12 days to every 9 days & that’s when I started to wean her off of the ‘roids. I’m not a fan of steroids but I do realize they help some people & they do have their place in treating CIDP.

      Why did the dr decide to add steroids?

      I did some researching…were you diagnosed with Morvan’s disease?

      Kelly

    • August 12, 2010 at 10:17 pm

      no i was diagnosed with voltage gated potassium antibodies–(auto-immune)i had been doing just the ivig for 1 year 2 gm per lb–(loading dose) every 3 months. the cidp did not worsen but has not significantly improved at all, the antibody % went from 14% to 17% after a year of ivig–thats not really a big difference so basically stayed the same. it was at my suggestion that she began the steroids–i thought they might speed the healing process. the ivig alone seems to be taking forever!!! i feel like im missing out on my life, really want to be able to run again, to ski, to travel and be able to comfortably walk and hike places while traveling. with the steroids we are also stepping up the ivig to every 10 weeks for the rest of this year. its hard with a full time job and 3 kids but i really am hoping to beat this thing and get back on with life!! i read so many inspiring stories on here–they’re great–love hearing what has worked and hasn’t worked for others–its one way we can help each other. when doctors hear that it has worked for others with similar symptoms i think they are more apt to try things. i read from a few different people that the pred/ivig waw successful together.

    • Anonymous
      August 12, 2010 at 11:03 pm

      I’m not really familiar with what you were diagnosed with but IVIG only lasts for about 42 days in your system. Maybe you need treatments which are MUCH closer together?

      Some people get IVIG weekly, bi-weekly or monthly. My daughter started out getting it 2-3 times per week & is now getting it every 4 weeks. It’s taken 4 1/2 years to get to this point but it’s a slow process.

      Kelly

    • Anonymous
      August 13, 2010 at 5:50 pm

      i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. i didnt make it to the 16th on monday the 9th i went back to my favorite er to see the oncall neuro and got readmitted to the hospital. got 3 60g doses of ivig. its now friday the 13th im back home and will be starting my 2 week maintenance schedule if ivig starting this coming monday. and i too am on 50mg daily of prendezone. im hoping this works. this up and down is very frustrating. any info on ivig and steriods together would be great.

      Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
      take care all for now

      roland

    • Anonymous
      August 13, 2010 at 10:23 pm

      Hang in there. We sufferers with CIDP are each of us unique in the symptoms we have and in the reaction of our bodies to different treatment regimens. No two people are identical in that respect. In fact, as time goes by our own bodies themselves often manifest different symptoms and reactions to treatment. What hurts or goes numb one day will not necessarily be what hurts or goes numb the next. What helps one day may not the next. On the other hand, the suffering of one day may disappear the next. What treatment didn’t work yesterday may ease us today. It’s really all a mystery. The doctors and scientists don’t necessarily have any answers — most of the time they’re just guessing. Pay attention to what helps. Listen to your body. Educate yourself. Share your good and bad news with all of us. Accept what is. Help me and others when we need it. Lord knows this disease is not easy, but we’re all in this together.

    • August 14, 2010 at 2:28 pm

      Lori,

      Here is the best explanation of prednisone that I have seen. There is a good section on the possible side effects and how to avoid them.
      [url]http://www.gihealth.com/html/education/drugs/prednisone.html[/url]

      I have been taking various amounts of prednisone for ten years and have had 2 IVIG courses in the last 2 years. (I have another IVIG arranged for next week.) After much trial and error my neurologist and I found the the low dose (15mg) every other day prednisone keeps my CIDP symptoms “reasonably” in check – the IVIG is a boost for when the tremors or numbness start creeping up my limbs.

      Unfortunately it takes time (and good communication with your neurologist) to experiment with the various treatment options you will need to deal with your CIDP. But remember that your life continues even while you are “sick” – save your energy for the fun stuff.

      Flossie

    • August 15, 2010 at 9:26 pm

      loved all the inspirational helpful replies—thank you!!! yes, i have read that low dose or even “pulse” steroids are good options if they work for you. I just need to stick with this high dose for 3 months to see if they’re going to work and hopefully regain strength in my feet, ankles and calves. If successful then I can work on a maintanenece regimen.
      Loved the post of what works one day–may not the next, one time may not the next etc… How true that is–even day to day i question myself on the prednisone–is it working or not–my biggest fear is i dont want to make things worse by taking it–then again i dont want to stop too early and never know if it would have helped. CIDP is a strange disease, when nerves degenerate they tingle and buzz and when they REgenerate they tingle and buzz–so how is one to know when the tingling is good or not good???

    • Anonymous
      August 16, 2010 at 9:16 am

      hi lori,
      i was diagnosed on april 12th and immediately received 5 days of ivig and put on 60mg of prednisone.
      before leaving the hospital after a 2 1/2 month stay, i received another ivig booster.
      i currently am decreasing my ‘roids to 40 and my dr said i will most likely stay at 20 for awhile. i also get ivig treatments once a month.
      i have been successful with this regime. i am out of wheelchair and have a walker.

      anywho, prednisone is a necessary evil for me.it has made me gain weight, grow hair like a man and sweat as if i ran a marathon. my moods have been bad at times as well. with all that said, it’s such a miracle drug for me.

      good luck to you. many blessings.
      michelle

    • August 17, 2010 at 9:43 pm

      thanks michelle–glad to hear the prednisone worked for you–i was hoping for some success stories:) the main side effect i’m feeling is the aggression–notice it while driving, working etc..–feel like i’ve drank about 30 cups of caffeine!–and im only on day 12 of the prednisone. If it works then the outcome will be worth it—I so want to get the strength back in my feet, ankles and calves—but if it doesnt work-what a lot to go through for nothing. how come you had to stay in the hospital while they were treating you? what were some of the symptoms you were feeling that made you know things were getting better with the prednisone and ivig?

    • August 17, 2010 at 9:57 pm

      [QUOTE=reed350]i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. i didnt make it to the 16th on monday the 9th i went back to my favorite er to see the oncall neuro and got readmitted to the hospital. got 3 60g doses of ivig. its now friday the 13th im back home and will be starting my 2 week maintenance schedule if ivig starting this coming monday. and i too am on 50mg daily of prendezone. im hoping this works. this up and down is very frustrating. any info on ivig and steriods together would be great.

      Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
      take care all for now

      roland[/QUOTE]
      sounds like you are on the same exact treatmant plan that i am right now–i am doing a 5 day ivig (just doing it in 2 days cuz of work and travel to get it) along with the 50 mg of prednisone. my cidp damage is in my feet, ankles and partial calves. i have both sensory issues and muscle weakness. my cidp is from a paraneoplastic disorder (potassium antibodies) am upping ivig to every 10 weeks. keep me posted on how its working for you– i have read many good articles on the prednisone increasing strength–so am hopeful, havent read about it doing a lot for sensory stuff. Lori

    • Anonymous
      August 18, 2010 at 12:12 pm

      i was considered a severe case and high risk. i was 30weeks pregnant when i was diagnosed.

      i feel a lot of strength on pred. more energy, but yes, aggressive and lack of patience.

    • Anonymous
      August 19, 2010 at 8:54 pm

      Lori222

      well got my 1st 60g ivig treatment on monday ( the start of my 2 week regime ) im still having sensory issues in my feet ( always feels like im standing on lumps or bumps ) i hope this goes away in time. im tired of checking to see if theres something in my shoes or socks…. as for the steriods im not sure if there helping or not. fatigue is a big problem and weakness in my legs and ankles.i also use to sleep like a rock but not anymore. my neuro tells me to give the steriods at least 2 months to see if they help. the first few days i took them i thought i felt weaker.

      Let us know how the treatments are working for you too.
      Keep fighting

      Roland

    • August 22, 2010 at 6:37 pm

      hi roland–i started the prednisone on august 6th–so its been a little over 2 weeks for me. I too have questioned that i feel weaker ??? then i did read someplace that it can feel like that in the beginning–it didnt say how long for though. Then i “ll have a day where i feel like im feeling stronger?? I keep trying the tippy toe test—currently cant not raise up on my toes or heels due to neuropathy and weakness so i try it every day–so far still cannot–BUT i think i feel stronger in the rest of my body which i didnt think was affected. definitely less fatigue overall. My dr also said to give it time–she said 3 months–i read the average result time was 1.9 months– i google a lot LOL–so not sure what site–reputable ones–that arent trying to sell stuff. Have you noticed a lot more tingling sensations since starting on the steroids? what parts of yous body is affected by the cidp? i also read that the feet are often the last to heal–makes sense since theyre the extremity furthest from our vital organs–so maybe the prednisone strenghthens other places before reaching there–maybe they were places that werent bad enough so we didnt notice strength loss?? I am by no means a Dr.–just speculating–trying to make sense of this disease in layman terms. Nice to have someone else going through the same thing–so i know im not the only one with the same ?s.. wasnt glad to hear of your weakness feeling but maybe since were both feeling it –its normal on the start of prednisone?? I’m pretty sure right now that i want to give the prednisone the full 3 months just so i can be sure it is or isnt going to work—peace of mind–if i stop too soon i’ll always wonder if i could have regained strength with it if i waited it out—patience:) 🙂 nice to hear from you–keep me posted. Lori

    • Anonymous
      August 23, 2010 at 1:23 pm

      Keep us posted on how you are doing. My neuro refuses to let me have steroids. God Bless.

    • Anonymous
      August 23, 2010 at 9:39 pm

      Lori222
      seems iv been affected equally in all 4 limbs when ive had my relapses. i loose my ankles first then is moves into my legs hands and arms. to the point that i cant lift my arms to wash my hair in the shower and i can do the tippytoe or raise onto my heels either. ivig so far has worked great for me. giving me back alot of my strength quickly. its 1 week today since my 1st top up ( as the outpatient nurse puts it ) and im feeling ok other that the sensory issues in my feet. i feel less of the tingleing lately, tho im not sure if its the steriods or the ivig thats helping with that. i feel the same way as you too and im giong to give the steriods a few months to see how they work.
      keep in touch too. and sorry that youve got this cidp too , its not the way i like to meet or make friends either. but it is nice to know im not alone either with all my questions.
      Keep Fighting
      Roland

    • Anonymous
      August 25, 2010 at 1:10 am

      Hi ~

      Have been reading this forum for some time now, but first time posting. I’ve been DX’d with sensory cidp. Over a six month period of time, I slid from being an active participant in my life, to a person who could barely make it from bedroom to bathroom even using a walker.

      During that time saw two GP’s, four neurologists — and it wasn’t until neurologist number four who actually [U]listened[/U] to me, and after running all the tests (MRI’s, Blood, Spinal Tap) again, discussed with me and my husband our various options and what he would recommend we start with and why.

      I began with IVIG only, then IVIG and methyl prednisone, a round of only prednisone to see if it alone was what caused improvement or if we needed to keep the IVIG as part of the treatment. Somewhere over the course of what we’ve done over the past two months, I am now able to walk again (button buttons, tie a shoe, hold a bar of soap, comb my hair, not have to use two hands to bring a cup of coffee or a soda up to my mouth, etc., etc. … you all know what I’m talking about).

      A guy named Jeremy wrote in a week or so ago — title was something like CIDP Hell — and he mentioned holding a glass and it just fell out of his hand. He didn’t like “drop” it — it just fell. I could totally relate.

      Anyway, it seems that the route that you and your doctor are taking is the right one — just gotta’ figure out the right combination. The doctor that “finally” helped me practices at Mayo Clinic in Scottsdale. After all those I saw prior to him (what a bunch of hacks .. sorry but true), he is a total blessing!

      Now that I’ve broken the ice, I hope to become a more active participant here. Without knowing it, you have all helped me so much. Thank you. There were times when I very seriously just felt like giving up.

      Best regards to all — Nancy

    • August 25, 2010 at 10:58 pm

      glad you “broke the Ice” nice to hear from you : ) my diagnosis also came from the mayo clinic–even though my neuro is in Mass and that is where i go for my ivig. It wasn’t until my current Dr. decided to send my bloodwork out to mayo that they were able to get a diagnosis as to what was causing the cidp. glad to hear the steroids worked for you, How did you feel while taking them?? I ? every day whether or not they’re working..and if they’re suppose to improve strength–then why do i feel weaker while taking them?? Lori

    • Anonymous
      August 26, 2010 at 8:09 pm

      Hi again Lori —

      We’re still on an evaluation basis on whether we should go with the IVIG “and” methyl prednesone, or the IVIG only along with the oral Cellcept. The doc would prefer not using the prednesone as the mainstay treatment long-term due to the side-effects. So we’ll see how it goes.

      I just completed a round of prednesone only and I seemed to stay pretty much even on it. I’ll be going in again next week for another round of IVIG. Then in a month we’ll start another three months with a monthly combination IVIG and prednesone. I think the hope is that we’ll be able to back off to just the IVIG and Cellcept to see if that alone will be enough to kick me into remission.

      As to how the prednisone makes me feel. Well, first time through energy really kicked up with only a little sleeplessness. This last time though, the night after my first IV, I couldn’t sleep a wink. After that, experienced some kind of internal nervous tension. Like I was kind of wired, if you know what I mean. As far as energy goes, just kind of status-quo.

      I can’t recall how long you said you’ve been receiving treatment???? What I do know is that when the folks on this forum say that it takes a lot of time and “patience” to get on the other side of this darn thing, they’re totally tellin’ it like it is.

      What I’ve tried to do (sometimes with more success, sometimes with less), is to really take it a day at a time. When I’m upset or discouraged with where I am today, I only have to think back to how far I’ve come from where I was.

      Today my hands feel strange and swollen. Before I couldn’t hold anything from a cup of coffee, to a toothbrush, to a bar of soap — and felt lucky if I could make it to my mouth with a spoon of food.

      Today my feet still feel strange and numbish and uncomfortable. Before I literally could not walk.

      One thing I took it upon myself to do is try and regain some strength and coordination through exercising with free weights. Got some 5-lb ankle weights, lay on bed, raise leg bent at knee, straighten leg out toward the ceiling, go back to bent knee and lower leg back down flat. I’d do three sets of eight each leg.

      Then I’d lay on my stomach and just do like a leg curl — just raise lower leg up at knee. Then holding an eight pound with both hands, I’d lay on my back and raise it back and forth from above my head to pelvis and back above my head again. Then sitting the edge of bed and steadying myself with the walker, I’d just raise up from sitting position and then back down. I also did a good stretch of hip and calf of leg. Being immobile for so long my body just kind of went to hell in a handbasket and I realized I slowly needed to regain strength and muscle tone — particularly in right leg.

      Well have to get on with fixing some dinner (a chore I used to sometimes crab about which I now totally appreciate being able to do).

      Take good care, keep the faith, and stay in touch. Nancy

    • August 29, 2010 at 7:54 pm

      yes i too exercise with free weights–i like it because it is a very measurable way to tell if im losing strength or not.
      My hands or arms have not been affected by the cidp just my legs—feet and calves. my quadriceps did not feel weak until the start of the prednisone–which i guess can be a side effect of that and goes away after its stopped??? like you i did feel very “wired” on the first few weeks of starting the pred. I started it on aug 6th so i’ll be coming on my one month mark soon!! its a strange feeling to be internally feeling wired and energetic but to physically feel weaker. My goal is to just get through 2 or 3 months with it so I can make a justifiable decision with my dr as to whether or not it worked–im keeping a journal with very measurable stuff–like still cant stand on tippy toes or heels etc.. things that mainly deal with strength changes since that was the reason for trying it. Havent heard much about the cellcept you mentioned–is that another type of steroid? do you have any idea what your cidp is being caused by? I do have that info which i guess is good because its another way for them to be able to tell if something is working–if the % of antibodies is increasing or decreasing.

    • August 29, 2010 at 10:48 pm

      I was diagnosed by Dr. Oh in Birmingham last November and he prescribed a 5 day round of IVIG for the first month and then 2 days each month afterward. He also prescribed 60 mg prednisone daily. For a few months I did good if I slept over 3 or 4 hours per night. Now, I can sleep all night and sometimes take a nap in the daytime!

      Before I started this I could walk without a cane but not very well. People were constantly asking me what was wrong with me. I could not stand on my tiptoes or heels. After I started the IVIG and prednisone I had to start using a cane. I can walk fairly well now without a cane, I cannot stand still without holding onto something and I still cannot stand on my tiptoes or heels unless I am in the water. I go to water arobics and I feel this has helped.

      In March my prednisone was reduced to 60 mg every other day and in July it was reduced to 40 mg every other day. Hopfully it will be reduced more when I go back in November. I am not being bothered by the side effects as much now.

      I am better now than I was when I first went to Dr. Oh, but not as much as I had hoped for but at least I have not gotten worse. He tells me that it is a slow process for the nerves to rejuvenate and that I need to have patience.

    • August 30, 2010 at 9:42 pm

      yes i too have been told that it takes a long time for the nerves to regenerate–especially the ones in the feet. I just find it difficult to determine when they’re tingling etc after a treatment if they’re regenerating or degenerating–I think the reversal process can be like the damaging process??? Lori

    • Anonymous
      September 3, 2010 at 8:46 pm

      Lori222

      hello again Roland here. hope your doing well. as i had wrote here before my docs started me on a 2 week regime of ivig at 60g. that didnt seem to be keeping up with my weekness and numbness. i call my neuro and they have now upped it to 100g every two weeks givin over two days. that started tihs week. and im still feeling numbness and tingling and weekness in my calves and ankles. im hoping its just the nerves slowly regenerating. and im still not sure or if theres even any help coming from the steroids. been on them one month now.

      How are you doing with your treetments ? you think the steroids are helping you ?

      Roland

    • September 5, 2010 at 1:23 pm

      im coming up on the 1 month–monday for the steroids. Actually ,walking has been harder since on them, more weakness and more numbness?? I havent called dr and have been sticking with them because she DID tell me it would take a few months to determine if they’re going to work. I had already been doing the ivig every 12 weeks for the past year. no worsening and very slight improvement–steroids added to see if they would give the ivig a boost? Dont mind dealing with this increase in weakness if i knew it was just the prednisone doing its thing and once i get off it i’ll be stronger or better–but no way of knowing i guess until i let it run its coarse…..whatever dont kill us will make us stronger–so they say–BUT lol ,thats what i’m afreaid of. nice to hear from you—your’e doing 3 months on the steroids too–right? I’ve read through a lot of archive posts and weakness from prednisone did seem to happen often—-i just could never seem to find posts that talked about what happened after the trial–did the strength improve to where it was prior –better–or worse case scenerio–stay weak like while taking the prednisone. If i find any more info on this i’ll keep you posted..hang in there : ) Lori

    • Anonymous
      September 5, 2010 at 7:04 pm

      Why? Because something ‘should’ be improving with this ‘combo’ and it’s not. Do keep detailed day by day records of good bad and deteriorating issues in terms of simple life things going on! That way you can say to the doc: Eating is hard, because holding spoons or forks are a challenge; or just getting up and to the bathroom in time etc is an ‘adventure’ [insert details here] and showering…. requires a 30 minute nap before I can get dressed.
      Sooo, say after treatments? Showers only need a 20 minute nap? that’s good… get my drift? Docs NEED some facts of LIFE to go on and by.
      Each doc has different training and background about HOW much of WHAT to give and when… Give the doc your cause/effect facts to help him help you!
      Good hope and heart from one who’s been there!

    • Anonymous
      September 5, 2010 at 11:16 pm

      homeagain
      i agree with keeping notes on how we are feeling. i find myself constently testing my strenght in my feet and ankles. if i can still stand on my toes or heels. im keeping my neuro as informed as i can. im still very new to all this as i was dx may of this year. and its got me scared to death of what may or may not be comming.

      Lori222
      yes my neuro has me on steriods for 3 months for now.

      Roland

    • September 6, 2010 at 10:18 pm

      thank you for the info–yes i do keep notes of strenghth and fatigue—definitely helps. At this time the cidp has only affected my calves and ankles so i base it on walking difficulty and exercise tolerance mostly.—–im jealous Roland –you can stand on your toes and heels–lol thats what my neuro told me to try each day to test for strenght returning while on the pred—but she said to give it 2-3 months..so im holding out hope… Did a little research on the pred, i think my weakness may have been metabolic—upped my potassium intake and feel a lot better. makes sense cuz even though i was feeling weak–i hadn’t lost any measurable strength???? thanks to all–i appreciate the imput–especially senior menbers who have been at this for a while–i appreciate all you have to offer from your own experiences : ) Lori

    • Anonymous
      October 10, 2010 at 9:23 pm

      Lori 222
      i havnt posted in a while. my neuro has takin me the prednisone , as it wasnt working for me. i have now started chemotherapy. had my 1st round on oct 3. im not feeling any better yet. im still getting 100g IVIG every two weeks.

      Roland

    • Anonymous
      October 10, 2010 at 9:25 pm

      off the prednisone i ment to say

      Roland

    • October 10, 2010 at 10:00 pm

      guess that makes two x’s for the prednisone–im coming off it too–down from 50 to 20 right now. made me lose wt., irritible, weakness. Are you going to continue with the ivig and the cancer drugs at the same time? Have you already tried PE ? my neuro said pe would be the nextstep after ivig. I previously had only been getting ivig every 12 weeks we are increasing it to every 6 weeks starting this coming week—i hope that does the trick–I am so ready to get my life back!!! Keep me posted on the new medication-after 6 sessions of ivig every 6 weeks i may be right there with you–i have told my dr to PLEASE step up the treatment—get aggressive do whatever it takes to make this go away—waiting and wondering for these things to work is the worst! Best of luck with your new treatment plan i hope it works—every success story here is hope for all 🙂

    • Anonymous
      October 10, 2010 at 10:29 pm

      Lori 222

      Yes the IVIG is being continued at 100g every two weeks and chemo every 28days. My neuro didnt think that PE was worth trying and decided to go right to the chemo. i agree with him and told him that i want the more aggressive treatments. I want my health back. tho the 1st round of chemo wasnt any fun. ( lots of Nausea )

      Whats your next step now that coming off the Perdnisone?

      Roland

    • October 11, 2010 at 9:31 am

      Increasing IVIG to every 6 weeks for 6 sessions–loading dose 2gm per lb. then pe if this doesnt work. dr hasnt mentioned any other medications yet for once im off prednisone. Im seeing her this week Thurs–when i go to MA to get my ivig, so i’ll know more then. I get the 5 day dose in two days–miss less work this way. The chemo doesn’t sound fun at all but it is aggressive–hopefully it will work. Are there a lot of side effects and risks with it? I’ve read a lot about the medications out there that sort of work like the chemo–i figured the dr would be talking of them soon since the prednisone didint help. Have you tried any of them ? Chemo must be about as aggressive of treatments there is available for this other than stem cell??? good luck –:)

    • Anonymous
      October 11, 2010 at 8:18 pm

      Lori 222

      my doc hasn’t suggested anything else. just the chemo. as for side effects , there is a posability of blatter damage so im to drink several glasses of water the day before and a couple days after the chemo treatments. there is also a rare posability that it can cause lukemia ( not sure if i spelt that right ) and posable hair loss. i hope the risks are worth it. reading posts on here the chemo does seem to be a good option.

      i hope your doing well

      Roland

    • October 15, 2010 at 3:11 pm

      wow Roland that is a lot of risks!!! I hope it works for you : )
      how quickly did you come off your prednisone? im thinking of cutting 5 mg every 3 days–so far havent really felt anything coming off it–if anything–better. my dr was pretty vague just said go slowly, call her etc etc… So how much nausea with the chemo–that would be the worst for me—besides the hair loss– being a guy, that part probably isnt too bad for you. Been reading a lot on the new drug–fampridine/ampyra –thinking about trying it if my dr agrees along with the 6 week ivig schedule.–i think the ivig every 6 weeks will make a big difference–this is a 5 day regimen(done in 2 days) keeping my fingers crossed—would cross my toes too–but i can’t— lol. Hang in there–if the chemo works then it will have been worth it all. Do you know what is causing your cidp–like what types of antibodies you have, or what triggered it?
      Lori

    • Anonymous
      October 17, 2010 at 8:35 am

      Lori222

      my doc gave me these instructions to come off the prendnisone. i was on 50mg daily. 30mg 4days , 25mg 4days , 20mg 4days , 15mg 4days , 10mg 4days , 5mg 7days , 2.5mg 7days. then stop. felt like it took for ever.

      the nausia from the chemo hit me the day after the treatment about 4 in the morning , and i was over a bucket fairly steady till about 8 that night till it subsided. my hemotologist had me taking stematol every 4 hours and gravol every 2 hours inbetween the stematol . nothing seemed to help.

      im hoping i can get something better before my next does of chemo on the 30th of this month .

      I dont know what started my CIDP. the only thing i can thing of is that last winter i was on antibiotics twice for what my GP thought was strepthroat , but the throat swabs came back negative both times.(maybe that virus triggered it) my neuro has no clue what started my CIDP either.

      ill read up on fampridine/ampyra hadnt heard of it

      Keep Fighting ,,,,, I AM

      Roland

    • Anonymous
      October 17, 2010 at 3:47 pm

      [QUOTE=reed350]Lori222

      my doc gave me these instructions to come off the prendnisone. i was on 50mg daily. 30mg 4days , 25mg 4days , 20mg 4days , 15mg 4days , 10mg 4days , 5mg 7days , 2.5mg 7days. then stop. felt like it took for ever.

      the nausia from the chemo hit me the day after the treatment about 4 in the morning , and i was over a bucket fairly steady till about 8 that night till it subsided. my hemotologist had me taking stematol every 4 hours and gravol every 2 hours inbetween the stematol . nothing seemed to help.

      im hoping i can get something better before my next does of chemo on the 30th of this month .

      I dont know what started my CIDP. the only thing i can thing of is that last winter i was on antibiotics twice for what my GP thought was strepthroat , but the throat swabs came back negative both times.(maybe that virus triggered it) my neuro has no clue what started my CIDP either.

      ill read up on fampridine/ampyra hadnt heard of it

      Keep Fighting ,,,,, I AM

      Roland[/QUOTE]

      Hi Roland,

      As you know, it is pretty rare to “know” exactly what caused CIDP. Most people don’t truly know as there are so many theories and possibilities.
      That said, which chemo are you on? Is it cytoxan?

      Have they tried Zofran or Anzemet for the nausea? You should be getting something for the nausea IV with or just prior to your chemo. Prevention is 100 times better than treatment for the chemo induced nausea.

      I would suggest that if they aren’t (but I am pretty sure they are giving you something IV with the chemo), and then ask for something stronger than what you have been given for the after effects. Zofran comes in a tablet that dissolves under the tongue and is also available in a generic (although i don’t seem to see as good results with it as the brand name).

      Good luck, keep up posted!

    • Anonymous
      October 18, 2010 at 9:47 pm

      Jdunk

      yes it is Cytoxan that there giving me.

      i did get Zofran before the chemo and felt good the day of the treatment it was the next day i was ill. i’m going to ask for more zofran to take after the chemo for my next treatment.

      Roland

    • Anonymous
      October 18, 2010 at 10:56 pm

      [QUOTE=reed350]Jdunk

      yes it is Cytoxan that there giving me.

      i did get Zofran before the chemo and felt good the day of the treatment it was the next day i was ill. i’m going to ask for more zofran to take after the chemo for my next treatment.

      Roland[/QUOTE]

      Yes, definitely!! you should have the oral tablets at home to take…before needed!