prednisone hell!. Looking for other CIDP to share my pain.

    • Anonymous
      March 13, 2011 at 1:16 pm

      I am currently on 60mg/day prednisone and am the poster child for the classic side effects. Mostly the insomnia, phycosis, mood swings, sweating/cold, shakes,weight gain, moon face, blah, blah. it is just devastating. Sometimes I I said it’s really a deal with the devil to trade paralysis for prednisone. Plus all the rx prescribed to counter the ‘side effects’, then more rx the counter the counter effects! Man I hate prednisone! Anyone else out there going through ‘roid madness?

      This is my third relapse which started in about sept 2010. My first attack was in 1989 (22 years I’ve been battling this). i had slow numbness and weakness to my hands then feet. within a couple months I was in a wheelchair.

      My next major relapse was in 2001-2005. Even more devastating. Total,paralysis, vision loss, bells palsy, pain, pain, pain!

      I thought I was through, but no here I go again! I have been involved with the GBS/CIDP international from the beginning, but I am just now dedicating myself to sharing on this forum. I hope you all welcome me. I have a wealth of knowledge on this and I would be grateful to hear from all of you about your experiences and I hope to give some inspiration to those that might be new to this rare and frightening affliction. This is the best forum for learning mpatient advocacy. period.

      May God bless all of you and may you all have faith to keep up your determination to turn your lives with CIDP into a positive so we all can count our blessings and help others who might be in even worse shape.

      Thank you, Mongo

    • Anonymous
      March 13, 2011 at 3:23 pm

      Hi Mongo. Nice to meet you. Has your doctor considered pulse steroids? From what I read there are much less in the way of side effects on pulse steroids.

    • Anonymous
      March 13, 2011 at 6:46 pm

      By all means, Mongo, I’ll share your pain. Although I’m not on steroids I’ll still share your pain if you share some of your stories.

      My short experience with treatment is that the doctor(s) treating me prefer IVIG as the first choice of treatment. They (the doctors) also acknowledge other doctors have their own method.

      Of course, you gotta go with what works for you.

    • March 13, 2011 at 10:42 pm

      sorry to hear of your prednisone experience. I was put on 50 mg Which i was later told may have been too much : ( Anyway, went through a lot of what your talking about—hated it!!!.On my 4th dose i got extreme muscle weakness, continued at the high dose for 2 months–until at which point a family emergency happened and i literally thought i was going to die from the prednisone. called dr and started weaning off then. unfortunately it did not help me—fortunately i’ll have no reason to go on it again since it didnt work.
      would love for you to share your cidp experiences–that’s how we learn….and thanks to the prednisone–just think you will be up all night looking for something to do!!!! Lori

    • Anonymous
      March 14, 2011 at 2:28 pm

      My doc put me on 10 mg a day for 10 days. Should I be worried? It seems like it is a pretty low dose.

    • Anonymous
      March 15, 2011 at 5:51 am

      Jessica; Yes 10mg/day is a very low dose. Are you having other treatments at the same time?

      laurel: Yes, during my last relapse (2001-2005) When I was being tapered down we did pulse. It does help provide some relieve from the prednisone side effects.

      At my initial attack of CIDP (1989) It took a long time just to diagnose me. During those months I deteriorated significantly. I began with IVIG treatment but it wasn’t working. Then I was put on 100mg prednisone/day. Wow! High dose! I discovefred all the major side effect horrors at that time. But I almost immediatly started responding. I was totally paralysed at that time. I could kind of move my arms around and had a device for putting a spoon or toothbrush on my hand.

      Eventually I got better over a period of about a year. My residual permanent damage was some finger contraction and foot drop to my left foot. Plus about 35 pounds of weight and the “moon face”

      When I got hit again was in 2001. My CIDP is a slow attack. I first start getting weak in my legs and then the numbness and pain starts in with the hands and feet. By early 2002 there was no doubt I was in a major relapse. I was again treated initially with IVIG. 3x per week for 6 months. I had a permenent pic line right from neck to my heart because my veins were collapsing.

      Again i only got worse. Totally paralysed legs and 80% paralysed in arms, plus major vision problems and bells palsy. Plus the pain of a thousand hot needles 24/7 in my hands and feet. Because the prednisone worked the first time I had to start in again at that time. I started with 80mg/ day. I also started doing plasma exchange. I initially wasn’t getting better. I switched my Doctors and my entire medical team and began going to Seattle (2 hour drive) and things started turning around. I was admitted for 2 weeks and recieved top notch care. Luckily I was in very good shape financially because most of all this I was paying out of pocket. (whew! I mean serious money left my hands)

      Once I was released I eventually got better but it took almost 2 years to hit my maximum recovery plateau. But I tell you that predinose was just terribly destructive. I was just in a psychotic state. Could not sleep, etc. My Wife and kids were impacted dramatically because of my state of mind.

      Once I tapered down to about to a 20/mg – 10mg alternate days it was somewhat managable. I was left with a permanent left foot drop and more finger contraction. But I feel blessed that I recovered to that point. Sure beats the being paralysed or….dying.

      Now I am on my third relapse. Started having numbness to hands and feet in Sept (2010). By dec. I couldn’t walk without a walker. Knowing what I respond to I got going on prednisone right away. 60,mg/day. Within 10-14 days I started turning around. Right now I have regained about 90% of my strength in my legs and hands and almost all the pain has receded. Wow, really pretty quick response!

      But I have a new Nuero who is really good! And I have a friend named Jesus. I believe that this time out the power of prayer and faith is the significant difference. But Oh do I want to get the predinose tapering down soon! Due to discuss that March 24th.

      Thanks to all of you for your thoughts and caring and reading my story. We all share a very unique challenge with this GBS/cIDP and only if you live it can you understand.

      God Bless

    • Anonymous
      March 15, 2011 at 5:48 pm

      Hi Mongo,

      Like you, my problems started many years ago, but these symtoms were so mild (unlike you) that the signs and symptoms did not directly point to CIDP until the last few years when the symptoms were more pronounced. My current neuro does not like to put his patients on prednisone, but prefers IVIG as the preferred treatment. I like that approach due to a personal tradegy. My father had an autoimmune disorder (Rheumatoid Arthritis). It was very agressive causing a lot of deformities. Anyway, he was put on large doses of cortisone and developed all of the side effects that you mentioned. One particular side effect actually caused his premature death. As I am sure you know, bleeding under the skin (bruising) is seen in many who are on steroids. Well his vessels became so fragile that he bled to death because his arteries actually ruptured in the abdominal area. With this family history related to cortisone, you can see why I am reluctant to take high doses of the stuff. Many do not see that extreme symptom, but it was a wake-up call for me.

    • March 15, 2011 at 7:56 pm

      Hi Mongo,

      I’m a long term user of prednisone and know the symptoms well. Pulse doses have greatly reduced the side effects for me. No weight gain, very seldom get the shakes, etc., but do have sleep difficulties which have been solved for me with a little blue pill, Halcion .025 mg. Old school drug which few doctors prescribe, but it is cheap and effective for me. Prednison and PE have been my life line since ’96, so I can’t be critical of the drug. Before the pulse doses, I was on 60 mg a day for about a year and a half and the side effects were pretty bad.
      For 2 years, every three weeks, I got a 3 liter PE followed by 500 mg solumedrol, then 100 grams of gamunex the day after PE which stablized things. Since December, I only get 500 mg solumedrol three days in a row every three weeks and my symptoms remain stablized.
      But, as you have read in the forum posts, we all respond differently to the various treatments. Keep after it.

    • Anonymous
      March 15, 2011 at 9:23 pm

      Mongo ,

      Why is your doctor keeping you on the medication if you are experiencing psychosis ?? That seems very irresponsible . Perhaps you need a new doctor to put you on something that is actually working for your body not hindering it .
      Best wishes

    • Anonymous
      March 16, 2011 at 2:50 am


      This time out I am happy to say that I am not experiencing the physcosis the way i did in “89 and ’01-04.I think part of the difference is the dosage (100mg vs 60mg) and my Docs had me on a dozen other meds that I think just made it worse. The other thing is back then I was under a lot of stress. I was running a multi-million dollar enterprise and raising kids. I am semi-retired now and the kids are in college so life is less hectic. I do believe stress is a factor.

      In the 22 years I have been dealing with this i have seen many Nueros. Some really dedicated and effective, some really bad. The Nuero I have now is among the better. When I began relapsing last Sept. I started seeing her. She took my chart (thicker then a phone book) and read the whole thing. The next time i saw her I’m telling you, she had the whole darn thing memorized! So before I began prednisone we discussed my scenario together in depth and she took all the time we needed. I have tried IVIG massively in the past and i just don’t respond., I have had the imniosuppresants. No luck. I have done plasma exchange and that has helped, but the only thing so far that I respond to is the prednisone.

      it should be the last resort, given the side effects and the ravaging it does on one’s body (and mind). But this time out I had to make a decision and that was to go right to prednisone right away. Now, only within 2 months I am very much better and can’t wait to start tapering. My main problem now is the insomnia, the ‘shakes and the weight gain/moon face.

      I do have 3ml lunesta for sleep, but it just doesn’t help that much
      I have ‘primidone’ for the shakes, helps a little.
      take nuerotin for pain, definetly helps

      Hey, thanks for your input and

      God bless You!

    • Anonymous
      March 16, 2011 at 2:58 am

      thanks for the input

    • Anonymous
      March 16, 2011 at 8:05 pm

      Mongo ,

      It’s good to hear you are having better days and are getting a good regiment for your body . As few people have mentioned that everyone is different and so are our treatments .
      Funny you mentioned your chart being a the size of a phone book … Mine is at least two ( no kidding !). I also have CIDP but since being diagnosed I have also been diagnosed with Transverse Mylitis and Hymolitic Anemia . So when I relapse I first have to be tested for the Transverse Mylitis then if that is negative then I am treated for CIDP . I also have to get blood transfusions . It’s all still crazy for me because I also ran a huge company with lots of stress . Your right about stress being a HUGE factor in your health and well being . I now am fortunate to work for a large medical practice and get knowledge and help whenever I need it 🙂
      I deal with insomnia as well …. I take Ambein for it . Sleep is something I know I need so I don’t feel bad for taking it .
      Find what works for you ….and it may change from time to time … but hopefully it will get better for you ! I really think one of the key things is finding a doctor who feel absolutely comfortable with and who is willing to find out what works for you and gets you to a place you can function 🙂

    • Anonymous
      March 16, 2011 at 10:55 pm

      I have always said that we know our bodies best, and it is our call on treatment. Conventional wisdom doesn’t necessarily apply; despite what some physicians would have us believe, one size doesn’t fit all. You have been through this long enough (and tough enough) to know what works for your condition. Keep it up. I don’t think CIDP stands a chance against you. I must chime in with my strong agreement on the stress issue, as it no doubt played a major role in triggering my CIDP.

    • Anonymous
      March 17, 2011 at 1:03 am


      Well I guess I was being shy about my chart. I literally have medical records on my CIDP that go back 22 years in a 40 quart cooler! my current chart is condensed to back to my last relapse so it’s only 6 inches thick.

      yes I also tried ambien. It gives me a bit of a “hangover”. When a switched to lunesta I preferred it.

      right now I am fairly content with both my PCP and my nuero. Both very patient (pun?) sincere, focused and most of all they realize that me, the patient, after 22 years of dealing with this, have a unique perspective on my own condition and listen and respect my input. Believe me, I dump doctors ASAP the second I believe they are not engaged and giving 100%.

      We are our own best advocates. We need to be tenacious and dedicated to our own treatment and recovery.


    • Anonymous
      March 17, 2011 at 1:06 am


      Yep, stress is a major factor. Add to that the fear and loss of independance and I believe we just add to the problem.

    • Anonymous
      March 17, 2011 at 8:50 am

      You know it. CIDP ain’t for sissies, that’s for sure. I’ve often thought that I’ve never needed to be stronger, and I’ve never felt weaker.

    • March 17, 2011 at 9:10 am

      I just started prednisolone 40 mg a day today for 14 days. Then I see my neuro and talk about continuing or what. Should I be worried that I will get side effects at 40 mg per day? Maybe I should cut the does in half and see if 20 mg per day works instead of doing the 40 mg per day she recommends. We have not yet discussed infusion treatment yet. I really want to go that route instead of cortisones. But I am leaving tomorrow morning for a week in Florida and wanted to be on something while I was gone. I was worried to leave this monster inside of me untreated for another 10 days and let it progress to being worse and do more damage to my nerves. I was hoping the pred would at least slow things and keep it in check until I get a chance to talk to my neuro and discuss further treatment. Does pred help stop the progression or just help you feel better. I have very mild symptoms. Just some mild numbness in right foot, feeling kind of shakey and unsure on my feet but not stumbling, sore knees too (new in just the past day for the sore knees), also some brain fog – i have been forgetting things lately. But maybe anxiety is also playing a role in my new symptoms. I just don’t know. But now I am worried about the prednisolone.

    • Anonymous
      March 17, 2011 at 10:22 am

      Ok, so I started with 5 mg Prednisone last Saturday and I was dizzy and lost my appetite. I felt really bad on Sunday so I didn’t take it. Started up again Monday, one dose in the a.m. and one dose in the p.m. 10 mg a day. Did ok. Took 2 doses on Tuesday, OK. One dose Wednesday. Called the nurse and told her that it didn’t seem to helping a lot with the pain, and told her about nausea, dry mouth, lack of urination. She said to just stop it then. Said that if it works, then it would work immediately. Now this a.m. I am feeling the pain worse, so I think it must’ve tampered down the pain, but not completely. I am going to take a dose this a.m. because I do not want to completely stop it.

      My question is: does it work immediately in 24-48 hours and does it just help a little bit with pain, but not completely? I have gotten the impression from the nurse that it should help immediately and be a noticeable improvement. I am confused because I did feel more energy and less pain, but not great. Any advice? Should I stick with it for a while longer?

    • March 17, 2011 at 10:27 am

      Good luck to you. I just started today too and so far only feeling jittery but I think that is anxiety and not the pred. But if i start to feel horrible as the days progress I think I will decrease my dose from 40 mg to 20 mg per day. But I did notice that the pain in my right calve is feeling better. When I woke up this morning i felt like i had a horrible charlie horse in my right calve. I had it for most of the day yesterday too (it went away at night when i layed down to sleep). Anyway, about an hour after I took my first dose of pred the charlie horse has almost completely gone away so I think the pred must have helped the pain in the muscle. But still worried about side effects starting up after a few days on pred. I was told it can take up to 2 weeks to see if your body is responding to corisiones. But I am not sure either.

    • Anonymous
      March 17, 2011 at 10:28 am

      First of all I would NOT make a decision on your own about cutting your dose in half to 20mg without telling your Doc. If you have CIDP in which your sympt5oms are fairly mild then time is of the essence to start right away with the dose your Doc telling you to get going on treatment to try and capture it early. I would be less worried about the side effects of prednisone (or any other treatment) and more concerned about getting a grip on the CIDP progression. It sounds like you are really looking forward to this Florida trip, but I would not let any other trips or activity influence your new number one job….fighting off CIDP.

      At my first attack a lot of time was wasted with all the testing and diagnoses and I went from symptoms like yours to full blown paralysis in a matter of 4-6 weeks while the Docs fiddled around. When I finally got going on Pred it took higher doses 100mg and much longer time to reverse. And even then I was left with permanent foot drop.

      In hindsight, and in subsequent attacks, I do not mess around or let incompetent Docs delay anything. I put everything in my life on hold and make fighting the CIDP as the highest priority.

      No, I would not view prednisone as some kind of process to keep you “in check” until you do something else. Everyone responds differently to various treatments. Frankly I am a little surprised your Doc put you on a 14 day “trial”. If prednisone is going to work I have found it takes at least 4-8 weeks to determine if it is getting your CIDP into remission. If it is they usually then want to see at least another 4 weeks of maximum plateau before tapering down, which takes many months.

      If you don’t respond to pred then you should consider the other alternatives. Most CIDP patients usually start with IVIG and/or plasma exchange before putting patients on steroids, because it’s so nasty. But what I’m hearing now is a lot of insurance companies are making IVIG difficult to get approved now because its so expensive. Compared to pred, which is pretty inexpensive. So maybe some of what Docs decision is based on your insurance. have you discussed the treatment options and weather or not you can get IVIG? Or plasma exchange?

      There other thing I have found very common is Docs don’t like to cross treatment simultaneously. They want to be able to identify individual responses isolated.

      I had the lumbar , It went smooth. No headache, no real problems.

    • Anonymous
      March 19, 2011 at 2:27 am


      I did some pulsed steroid treatment for a while, while waiting for azathioprine to kick in. We were simulating Dr. Parry’s IV pulse steroids using oral prednisone, so I was taking a 650 mg (yep, not a typo) dose one day a week. I did that for a month, then tapered by 100 mg a month until I was down to 250 mg (I think), then slowly to zero over the next several months.

      The first day I did this schedule, I thought I was handling it okay. Nope, not at all. I was working with a good friend, who said something slightly sarcastic about something I had just done. It was really quite funny and I more than deserved it. But that was only in retrospect. At the time, I threatened to punch his lights out; which, even as I was saying it, I knew was wrong and stupid—he did not deserve it and I knew I was incapable of carrying out the threat. After that, I took my large dose and isolated myself as much as possible for the rest of the day. By the next day, I was OK to be with other people.

      I, by the mercy of God, did not suffer from moon face or weight gain, to the point where my neurologist would kiddingly ask me if I was actually taking my prednisone. I had bone density to spare and took Fosamax and calcium with vitamin D to help reduce osteoporosis. I took Pepcid to avoid the common stomach upset. I monitored my blood sugar; I did not become diabetic, but my waking glucose numbers did creep upward, and really have not come down. I developed cataracts, which I have since had removed.

      However, the prednisone definitely helped me, and did so quickly. If it were not for the cataracts, I would have no regrets about using it. Even with the cataracts, I would still use prednisone, although I might try smaller doses for less time.


    • Anonymous
      March 19, 2011 at 5:54 am


      So your in La Mirada? I grew up in Buena Park and worked in a warehouse in High School in La Mirada.Small world.

      WOW! 650mg at one dose! I couldn’t do that. What was your total time on prednisone, start to finish, in terms of months (or years).?

      When I was on 100mg/day I also had various bouts of aggressiveness and just really bad thoughts against my perceived enemies and unfairly against my own family. Luckily I never acted out on anything.

      Fortunately I never had to take anything for the stomach, like Pepcid, but I did take the calcium and Vit D supplements and had the bone density scans. Again, by the grace of God I maintained my bone and joint structure. But before the CIDP hit me I was an athlete to start with. I was (am) a martial artists, I work construction, I raced motorcycles, I was a gym rat, surfed, blah, blah. My Nuero’s agreed that being in that kind of shape to start with really helped me contain the damage from both the CIDP and the prednisone and other meds.

      Before I started this third relapse and began back on prednisone (Jan 11th) we did a full blood panel for just about every thing you could test for. I was within all normal ranges for everything! Miraculous! Had another blood draw last week. Going to my Nuero next Thursday. We’ll see whats what.

      Prednisone always quickly starts turning mr around, but I just hate the stuff. It’s been over 2 months now and i am really much better. Can’t wait to start tapering down.

      This is my third relapse and third round of predinisone. This is the most rapidly i have responded. My last go around I was, from start to finish. on the pred for about two years but I was WAY worse condition before i started. This time I jumped in early and that made a big difference.

      I would like to hear from others about how long/short their taper time was? And yes, I am very familiar with the dangers of a too rapid taper, so I don’t want to mess with those problems.

      Thanks everyone, this is a great forum. Should be required reading for every Nuero treating GBS/CIDP

    • Anonymous
      March 19, 2011 at 9:56 pm

      Just wondering with the pulse steroids is there any difference in getting them IV versus oral? I know it would be cheaper to take them orally as one would avoid the nursing administration costs. Would they be harder on the system orally? Just thinking of the impact on the stomach. Thanks.

    • Anonymous
      March 20, 2011 at 9:05 pm


      Prednisone is converted by the liver to prednisolone, which is what I think they administer by IV. It is therefore likely harder on the liver than IV administration. Because prednisone can cause stomach upset directly, oral prednisone is likely harder on it than IV administration. However, if you check liver function frequently and control stomach upset (prednisone with food), it seems to be a good option. Work closely, though, with your neurologist, because each of us differs in our response.


    • Anonymous
      March 20, 2011 at 9:18 pm


      Shortly after diagnosis, I was started on prednisone and used it for 9 months. I took a break for about 6 months while we tried CellCept, then went back to it for 6 months while waiting for azathioprine to kick in, then switched to the pulse protocol. The pulse protocol with the taper included took about 14 months. So, overall, almost 2.5 years, at an average dose of about 50 mg/day.

      Regarding the psychosis and dose, I think you might find that a large dose once a week actually makes the mean, evil thoughts more manageable, rather than less. What it did to me was make me truly a horrible person one day a week and more or less bearable (my normal state) the rest of the week. When I took alternating day doses, I was not truly horrible any time, but I wasn’t even remotely nice either.

      Yep, it can be a small world; thank God, not like the Disney ride, though.

    • Anonymous
      March 20, 2011 at 10:16 pm

      In my first 3-4 years after diagnosis I took a variety doses of prednisone with every imaginable side effect. I recently had a colonoscopy and they noted that I had small sores in my colon from those pills because they do not fully apsorb in the stomach. Even at my worst down turns now I refuse to go back. Luckily my nuero and Mayo agree!

    • Anonymous
      March 20, 2011 at 10:19 pm


      Prednisone is converted by the liver to prednisolone, which is what I think they administer by IV. It is therefore likely harder on the liver than IV administration. Because prednisone can cause stomach upset directly, oral prednisone is likely harder on it than IV administration. However, if you check liver function frequently and control stomach upset (prednisone with food), it seems to be a good option. Work closely, though, with your neurologist, because each of us differs in our response.

      Thanks for the follow up information Mark. I am saving your comments.

    • Anonymous
      March 25, 2011 at 4:00 pm

      Unfortunately I was kind of a test baby way back when in 1987 when I was first diagnosed with CIDP. At the time I was put on 200 mg of Prednisone on a daily basis. Yes, that is 200 mg. 24 years later I can only wonder how much of the residuals was caused by the disease and how much was caused by Prednisone. I swore I would never take Prednisone again in my life when I went off in 1995, and I swear the same today. I will never touch Prednisone for any reason on earth. I’ll suffer a lot before that will ever get close to my lips again.

    • Anonymous
      March 27, 2011 at 10:55 pm

      I just started on IV prednisone about 4 weeks ago. I was doing ok for about 2 weeks and then the 3rd week – I started to relapse. Couldn’t walk up/down stairs, unstable, arms were so weak I would have to prop them up,etc. Landed in the ER where they gave me IVIG. Long story short – I stayed 4 days in the hospital and got prednisone 250mg every 6 hours and IVIG once a day. I hate the steroids! My chest feels heavy, itching all over, pounding heart. My moods are swinging so fast I’m getting whiplash. I’ve been reading all the comments about dosage. I feel like I’m on an extremely high dosage. My strength is a little better, but not as good as I used to get with IVIG. And today, I’m walking stiff legged and slowly. I honestly don’t know which is worse – the weakness or the effect of the steroids. I’m glad I’ve found this site. I’ve felt so alone. It’s been an awful week. I was diagnosed in Aug. 2010 and have been pretty hopeful and positive, but this week it’s just been so hard. I feel like I’ll never be healthy again.

    • Anonymous
      June 25, 2011 at 11:16 pm

      Mongo! I’m Mungo!

      I’ve been on pred since the mid 90s, on varying doses. I HATE it, but I just keep reminding myself that I’d rather be chubby than in a wheel chair. Also, all the up and down doses has caused my face and body to lose some elasticity. So sad. I definitely feel ya.


    • Anonymous
      July 14, 2011 at 5:30 pm

      I emapathize and I am so glad I could “just say no ” to pred.
      I was on it a few years back for other reasons and my wife and I agree it will only be used as a last resort!!
      I was diagnosed w/ CIDP in late Feb 2011. Began IVIG treatment in March . Recently my Dr. had me go 6 weeks between treatments to see if my body ‘rebooted’… no such luck.
      I went way backward and only now, one week from my next IVIG, do I feel close to where I was when I began backsliding. My wife is wonderful, but wants me to rest way more than I want. When I over-do she tells me I should have stopped sooner. I tell her I am working on the calibration for that ‘meter’, the one that tells me when to stop. 🙂
      Any way sorry I digressed. (my buddy and I say, “oops! a bird flew by and I got distracted”).
      I’ll be praying for your improvement. Know there are lots of us who ‘to some degree’ share your pain. We’re all rooting for you and your recovery. Best of Luck!!

      Mike G.

    • Anonymous
      July 15, 2011 at 10:39 pm

      My 9 year old newly diagnosed CIDP son got chemical meningitis from IVIG, so he is now on prednisone. He hasn’t been on it a week yet, but I totally agree on the meds to treat the side effects. He is on 40 mg/day for 2 weeks, then 40mg every other day for 6 months…YAY!! Unless the increased intercranial pressure comes back, then we go back to square 1 on that issue but he could go back to IVIG. The thing that really sucks is we were already seeing improvements in his CIDP symptoms after 2 IVIG rounds.

    • Anonymous
      July 18, 2011 at 8:53 pm

      Right now I have regained about 90% of my strength in my legs and hands and almost all the pain has receded. Wow, really pretty quick response!
      Thanks for sharing your experiences. I’m in awe of the suffering that so many on this forum experience. If you don’t mind my asking, what is 90% in your case? Are you able to function without a cane or walker? I’m curious because my doc is considering prednisone for me since I haven’t responded to IVIG. But my symptoms are far less severe than yours and I am VERY reluctant to go that route.

    • Anonymous
      December 5, 2011 at 5:28 am

      I’ve been in a third relapse over the last two years. I think the aggressive prednisone treatment actually made me worse. 50 days of ivig over the last 18 months, but that is over thank God. I am finally weaned off the steroids and putting together the timing of when each treatment occurred I’m beginning to think the steroids actually exacerbated my symptoms. Anyone else have this experience???

      Thanks. This forum helps me a lot.

      – Rosemary

    • December 5, 2011 at 10:13 pm

      YESSSS!! prednisone made me worse too—-started on my 4th day/dose, could feel my legs turn to jello. I did finish out my 2 month trial of 60 mg then tapered off–just to assure myself that it was a failed treatment and wouldnt work.
      Never plan to try it again. Instead of getting stronger–i got weaker. instead of gaining weight as many do on pred–I lost weight???

    • December 6, 2011 at 8:47 am

      I also tried pred as my first treatment when I was first diagnosed. I hated it!!! I was so fidgety and grumpy, I could not sleep at all at night. I felt more shaky and dropped things more then before I started the pred. So I also went off and started the IVIG. Now I have had about 12 rounds of IVIG every 21 days and am doing really good. It took a while for my symptoms to stabilize and if i try to push my IVIG out to 4 weeks instead of 3 I start to regress and have symptoms again. So as long as I get my IVIG by 21 days my life has been pretty normal except for minor, annoying symptoms like creepy feeling in legs at night and hands falling asleep sometimes at night too.