• March 18, 2011 at 4:30 pm

      The best inspiration I received on this forum was a post by Lilly on our Success Forums call Bye Bye CIDP
      Lilly was treated with Prednisone at age 25 for 3 and one half years much the same way as I was. After 8 years she is still 100%.
      I was given a much smaller dose to start because I had little or no body fat and am of average height.
      I have been exercising from the beginning and each time the Prednisone was reduced I kept on getting stronger. After 3 mos. on Prednisone all the pain went away!
      Now I practice Chi Kung and my balance is great.
      For 3 months now I haven’t needed any Prednisone. Some nerves in my feet are still healing and according to my Neuro (THE BEST) I am close to 100% and he doesn’t expect me to backslide.

    • Anonymous
      March 19, 2011 at 7:39 am

      [FONT=”Microsoft Sans Serif”]i spoke with her too, way at the beginning– she’s awesome!

      i am so glad that both you and her are continuing to have success with prednisone! i wasn’t so lucky– but hey, take success where you can find it right?

      stay well,

    • Anonymous
      March 19, 2011 at 3:36 pm

      That is great Katy! Nice to hear success stories. Hubby is too old for stem cell treatment, IVIG is expensive, so knowing that prednisone works is encouraging.

    • Anonymous
      March 25, 2011 at 2:41 pm

      How drastic were the changes to getting better with prednisone. I’ve been on 80mg for 14 days and now down to 60mg for the rest of the bottle. I am on Day 15 and I am feeling quite a bit better in strength and balance, but I’m just wondering, does the sensory improvement come later? Are the beginning results drastic and then it takes a while for the rest of the symptoms to respond? My feet still are fuzzy / tingling like they’ve always been and I can’t run, but I can do a little jog now if I absolutely had to move somewhat quickly. Should I expect (because I’ve already seen some improvement) more improvement from here on out?

      Thanks in advance!


    • March 26, 2011 at 8:48 pm

      We are all unique individuals and no two of us are alike. Even CIDP has variants and certain subtypes aren’t even defined. Individual responses to therapies are variable and cannot be clearly predicted. Failure to respond to one treatment doesn’t preclude benefits from other options such as immunosupressants, drug combinations or Stem Cell Therapy. Treatment plans must be individualized for each patient. Medical circumstances and cost may influence choice of treatments.
      It seems, Cory, that you are proactive in your healing and continully searching which is a good, positive sign. The right Doctor who can precisely administer the correct therapy and proper treatment is a Godsend.
      I will keep faith that you will experience a Full Recovery!


    • Anonymous
      September 6, 2009 at 10:08 pm

      Hi everyone, Only my second post so can anyone help? I went back to my neurologist last week after 4 months of decline. He has now put me on 100mg of prednisone once a day for a month to see if that helps (as well as continuing monthly IVIG). I cant believe the difference in me this week. I am walking longer distance without any kind of gait. It doesnt last, as I still get pretty tired but its a great start. I have noticed a few negative posts regarding this drug and was wandering about that.

    • Anonymous
      September 7, 2009 at 9:40 am


      i have been on pred for a year in varying doses. i started high, 60mg daily and am now down to 5mg.

      ivig did jack for me and when i was near paralysis, my neuro told me it was time to do pred and i agreed. prednisone is not good for long term use for all the reasons you’ve read about. on the one hand, it will pick you up from the dead, and on the other hand, it will damage your body in more ways than i care to list.

      the thing is, if you are so down, so sick– it can be a great intervention to give you back some strength and reduce pain, etc. but generally, it is not recommended for lifetime use. 100mg sounds high… but then, maybe you’re a big guy and perhaps it makes sense for your weight.

      my best healing took place after my jerk-off insurer told me i could no longer see my neuro and i began treating myself. i had the prednisone on hand and when i began to relapse again, i put myself on first 20mg, then 15, then 10 and finally 5mg… it made me wonder if a lower dose was more efficacious as i did so much better, in every way, on the lower doses. who the heck knows. but when i was on 60mg, i was climbing the walls. i’m still jittery from the effects of the pred, but its tolerable.

      also, know this– at first it makes you feel so much better, as you described. and that’s great. but beware, that initial elation will give way to the effects of steroids on your body. obviously i’m no doctor– but my own experience tells me i never needed such high doses. the docs seem to think you need these high doses for efficacy; they also say that the effects will take a few months. now we both know that is untrue as you are already feeling much better. the same thing happened with me. when i took my very 1st dose of prednisone, i felt improvement within hours! i was unable at that point to simply get up from the couch– i was in agonizing pain, couldn’t walk and was so numb… by the next morning, i could get up from the couch and, while holding walls, could make it to the bathroom. it’s kind of a miracle drug, but its a deal with the devil at the same time.

      be careful. and be your own advocate– collaborate with your neuro, express your concerns, etc. you can read about what pred does to your body, its adverse effects, etc. so i won’t list them here. i’ll add this though– the effects of prednisone are cumulative– meaning, what you feel now may not hold steady and you may develop other side effects as time passes.

      i don’t know if any of this helps but if you ever want to talk or write privately, i’d be happy to communicate with you. just let me know. my website, with my contact information is: [url][/url]

      best of luck brother.

    • Anonymous
      September 7, 2009 at 12:08 pm

      [SIZE=”4″]Prednisone is the only thing that has worked for me so far. I’ve been on it for over 5 years. Various doses. My high was 80 mgs. I got every side effect going. Dropped to 60 & lost them all. I was on 15 for a long timme. Tryed to do 10, but couldn’t. Now I’m in a flair up, so I’m higher again.
      As for damage, I’m sset for a new hip in Dec. Yes its a side effect..[/SIZE]

    • September 7, 2009 at 2:26 pm

      Hi Jet:
      Oct. 2008 I was diagnosed with CIDP and started on 20mg of prednisone. I improved within a month and the next month the pain went away. The dosage depends in part on the size of the person. I’m a small lady.
      In the past 10 monthes my neuro has reduced the pred 5 times and I now take 10 mg every other day.
      He is hoping to take me off the prednisone completely and has notified the physician in Salt Lake City who provided a second opinion on my nerve and muscle biopsy that my improvement has been dramatic.
      I walk around fine in the house and on any even surface, however when I go outside I always use my walker. My feet and shins have a lot of numbness and I am very careful when I walk. I fell 5 times before the diagnosis.
      I hope I can get off the prednisone completely and the neuro says to be patient, because he says the nerves in the feet and toes are the last to come back.
      I am left uncertain about my recovery, because if I have a relapse then I will need to resume the prednisone again according to my neuro.
      I know that prednisone is a nasty drug with nasty side effects and the longer it is consumed the more harm can be done.
      I seems that CIPD has an individual profile for each of us and we all suffer in different ways. It’s probably the same with the prednisone and how it affects each individual.
      I was never offered IVIG or plasmaphersis, and I haven’t needed anything for pain since last December. The fatigue and weakness are gone and I can walk with my walker for 3 hours at a time without resting. I also use the exercise bike and treadmill in our clubhouse.
      Getting used to an uncertain future ie. whether I will walk normally again and whether I will face a mild or severe relapse or recover completely has made me think in more creative ways about facing whatever happens.
      I was also diagnosed with diabetes a few months prior to the CIDP diagnosis.
      My sugar control has been very good even though the prednisone can elevate sugar levels and even cause diabetes!
      I am 7l, just retired because of the CIDP and I don’t even know if my Medicare will cover IVIG, although I wrote to my Congressman about the bill in congress for IVIG to be included in Medicare coverage. I am not sure, but if my doctor mandated IVIG then I could probably get it.
      I wish you well, Jet, and the more information we have about this inscrutable disease maybe the better we can deal with it!

    • Anonymous
      September 7, 2009 at 10:30 pm

      I’ve been on methylprednisilone for almost 2 years now and it has been wonderful in helping control this beast….am currently down to just over 250mg twice a week along with cyclosporine twice a day and the side effects are starting to build up a little…I go see a new neuro in a few days and it will be interesting to see what his philosophy is.

    • Anonymous
      September 7, 2009 at 10:35 pm

      I am on Prednisone also. One Dr I see told me that with Prednisone it mask any infection you might have in your body. Like if your sick you go see the DR but on Prednisone you don’t realize your sick till the infection as really gotten bad then it is harder to treat you.

      I am now on 30 mg


    • Anonymous
      September 8, 2009 at 12:00 am

      Hi Alice and everyone,

      I really need some advice. I was diagnosed with CIDP several years ago.
      I tried IVIG for well over a year and it did nothing! No luck at all with it.
      I have tried Embrel, Orencia and a host of other pills without much

      Then I too was put on the miracle drug Prednisone. It’s the first thing
      that made any difference! But, my doctor won’t use it long term. He
      won’t budge on that. So, we cut down my dosage to where I am on
      5 mg/day and miserable. I probably would be even worse without the
      5 mg!

      About 4 months ago, I started getting a Solumedrol IV drip every other
      week. It has helped with the pain. My inflammation factors (Sed rate,
      CRP, etc. have all gone down). The problem is the side effects. I am
      going out of my mind! The insomnia is terrible and I am a bundle of
      nerves! My panic disorder is out of control! I am dying of the heat all
      the time. My face is flushed. I have a metallic taste in my mouth and
      sometimes I am so itchy that I can’t stand it. Last Thursday we cut
      the dosage to see if it would make a difference. It hasn’t. I came home
      Thursday and have not gone out since.

      Have any of you had any experience with Solumedrol? If I need to
      stop it, do you have any thoughts on what I could try next? I really
      don’t know what to do. I feel so stuck. Any advice would be greatly

      Thanks in advance.

    • Anonymous
      September 8, 2009 at 1:18 am

      When I get Solumedrol I get pretty wired and have thrown Tupperware at the cat. I start crying and sleep is hard enough without adding this stuff.
      I rarely get it but recently the IVIG had been causing some bad reactions.This last week I asked for it in my IV. Slept like a rock for 14 hours but the next 2 days lookout.
      I had the same problem with one of the IV nauseous meds-I went up one wall and down another.

    • Anonymous
      September 9, 2009 at 1:23 am

      Hi everyone and thx for your replies. I made a mistake…I am on 25mg per day not 100mg…oh and Alice ,I am female and 60k… sorry the high doseage would have misled you. I like the honest replies that are posted…Doctors tend to down play side effects questions.

    • Anonymous
      September 9, 2009 at 9:34 am

      Hi Jet, I was diagnosed in December of 2007 at first it was gbs but then cidp was in the hospital from October 29 2007 to January 14 2008 I had my first ivig when I first was in hospital but went for a spiral when I had it then was on very high doses of predisone and ivig I never stopped taking the steriod till the end of September 2008 and was weened off slowly but yes there are side affects the round face really bad acne weight gain but as to the side effects I well take them again, because I went from being treached and unable to move for 3 months to now walking and have some of my normal life back….so keep on smiling but you will get there Brenda

    • September 11, 2009 at 2:55 pm

      Hi Jet,
      I have been on and off prednisone for the past 13 years with good and not so good results. Oral prednisone tends to cause significant weight gains and if taken daily over extended periods of time can cause kidney damage. I was on 60 mg a day for over a year at one time. Pulse doses (every other day) tend to lower the risks of the drug. I also tried the chemos, IVIG, imunosupressants, IV Solumedrol pulse doses and PE over the years. PE with a 500mg IV of solumedrol varying from weekly to monthly slowed the progression somewhat, but never really stopped it.
      In December of 08, I was ready to start using a wheel chair, could hardly stand because of weakness and my balance was so bad I used a scooter when I went out, which was seldom.

      When the foundation sent out the notice that Gamunex had been approved for CIDP, I talked my neuro into letting me try it even though prior IVIG teatments were ineffective. He agreed to a rather aggressive new treatment plan which calls for PE every three weeks, followed by the 500mg IV of solumedrol, then the following day, I get 200mg of Gamunex (brand specific). Gamunex is processed using glucene, an amino acid, where as all of the other IVIG products a processed using gulcose. I get pretty hiper for about two days after the solumedrol, but after that I get back to normal, whatever that means. It took three months to get my insurance company to approve the new treatment protocal and I started my first Gamunex on Christmas eve and finished at 3:00 A.M. Christmas morning.

      Now, just eight months later my doctors says the progression of my CIDP has stopped for the first time since diagnosed (1996) and , thought he cannot explain why after all of this time, there is some nerve regeneration and I can do physical activities that I have not been able to do in years, I seldom use my scooter when I go out, walk almost normally again and can drive for extended periods of time. I still take my cane with me as my balance is not back a 100% yet, but I’m getting close. Any sleep difficulties from the steriods is controlled with a small dose (.025mg) of Halcion, an older generation drug. I also keep some Xanax on hand in case of a panic or anxioty attack.
      Sorry to ramble, but my point is that there is hope and sometimes it may take more than one treatment to put the disease in check. We all respond differently to the various medications, but the key to beating this thing is being aggressive with treatments until you find the one, or combination that works for you.
      I don’t post often, but read the posts often. I notice that most CIDP’ers are being treated with one protocal at a time, which works for some and not for others. For me that never worked, but this new three pronged approach has been the “silver bullet” I have been searching for since ’96 and has been a real game changer for us. My wife and I just got back from a 2600 mile road trip through the upper midwest, then two weeks later went to the coast for the weekend and next week are headed to the northeast to visit family and friends. All things I could not do just a few months ago.
      Christmas Miracles do happen! Just something for consideration. Best to all, and never,ever give up.

    • Anonymous
      October 1, 2009 at 10:32 pm

      Hi everyone and thanks for your shared experiences with prednisone, I have been on it for 5 weeks now and the pain in my arms has completely gone…legs are still dead!!! Ive noticed my stomach is getting very bloated…look like Im 6 months pregnant by the end of the day and my ankles are getting very swollen. I also have had a sore throat for the last 2 weeks but no cold or flu symptoms…could these 3 new problems be the prednisone????

    • Anonymous
      October 2, 2009 at 6:49 pm

      Many times prednisone has stomach issues. Did the Dr. perscribe anything for upset stomach or gas?

    • Anonymous
      October 3, 2009 at 5:11 am

      No he hasnt prescribed anything else, but I see him afgain this week so will drill him..ks

    • Anonymous
      October 3, 2009 at 1:28 pm

      Others could undoubtedly speak to this in more detail, but my wife and I have been told that prednisone can exacerbate viral infections…almosts acts like a catalyst. I’d make sure I mentioned to my doctor about the sore throat. My wife has an eye condition that has a sort of Catch-22 to it; steroids would be the best treatment, but can’t be given under certain conditions.
      Just a thought…

    • Anonymous
      October 4, 2009 at 1:22 am

      I never took oral prednisone, but was on weeklysolumedrol infusions for 21 months, which served only to keep me out of the nursing home. Solumedrol is a form of steroids, it knocks down inflammation, allowing nerves to work better. It also increases strength by doing this, & does mask pain significantly. But both prednisone & solumedrol come with significant risks.

      In addition to the obvious, the weight gain (I gained 80# in 21 months), irritability, sleeplessness the day of & then being dog tired the day after that, I also developed cataracts in both eyes, skin ulcerations all over my body, especially in my lower legs, etc. I could add so much more, but had my last infusion in Feb of 2004 & one tends to forget. How I wish I never would have needed to take them; I wish I could have had cytoxan infusions instead. But it was only a few months into my illness & no doctor would have prescribed that back then. Just be real careful with the higher dose steroids.

    • Anonymous
      October 4, 2009 at 11:58 pm

      Hi! I’ve been on pred for almost 15 years now, varying dosages. My maintenance dose is 5mg/day. At this dose, I have an extra 20 lbs. My bone density is not what it should be for a 45 yr old. I had jaw necrosis (a side effect from fosamax, which I was on to combat the bone loss), but that was caught very early and resolved with some oral surgery. I’m pretty vigilant about keeping healthy, so I rarely get sick, but when I get a wound it takes a very very long time to heal. When I do get sick, I get better in about the same amount of time as everyone else.

      But the good thing is I can walk. And go to the gym, and work a full-time job. I could not do these things without the pred.

      Right now, I’m not on any other medication for the CIDP. I hate pred, and I love pred.

      About the stomach upset and bloating–my doctor recommended I take zantac. I don’t, but I haven’t had the stomach problems.



    • Anonymous
      September 11, 2008 at 4:09 pm

      My doc advised me that on my next IVIg round (5 days), he’s going to have me premedicate with 20mg of Prednisone before coming in. At that dose will I have the steroid side effects that everyone describes? Hopefully the prednisone helps with the migraines/vomiting and weird side effects (like eczema) I get from IVIg.

    • Anonymous
      September 11, 2008 at 4:27 pm

      call me to discuss–

      p.s. i am sending you my phone # privately–

    • Anonymous
      September 11, 2008 at 4:58 pm

      20 mg’s of Prednisone just to pre-medicate with should not really cause you any side effects.

      Hope that helps,


    • Anonymous
      December 7, 2007 at 4:54 pm

      Hi all, Rheumy thinks the prednisone is causing some of the weakness. she is going to contact neuro and see if they can start cutting my 80 mg dose. the md’s cannot talk until tues. so guess we will see then.
      But, on Tues the neuro almost increased the prednisone to 100 mg pr day.
      my quads do not want to hold me up. walker helps.
      anyone else have weakness from prednisone?

    • December 7, 2007 at 10:03 pm

      It is funny you should mention that! I was researching cell cept and all the reasons for Kevin NOT to take it and it said that it causes weakness. Prednisone as well. In addition, I came across a study that showed 2 groups, one on prednisone and one on ivig. The ivig group faired better, with no side affect.

      How are we suppose to figure out if the weakness is cidp related or prednisone related? It just seems so counterproductive.

    • Anonymous
      December 8, 2007 at 5:32 am

      Weakness is the main reason I can’t take prednisone. My legs shake all the time, I have no strength, no muscle control and yet I’m so wired up I can’t sleep. I don’t recall that side effect when I was on Cellcept but I was only on it for 6 weeks, then they took me off because of the fever. Aside from my skin looking like a road map and my kidneys aching I dont’ have side effects from IVIg so I’m sticking with that.

    • Anonymous
      December 8, 2007 at 8:39 am

      Some people with CIDP, especially children, cannot take Prednisone as it makes them weaker. We went through this with Emily when a neuro put her on it. She went from her eye relapsing every 12 days to every 9 when she was on the highest dose.

      I say that you should start to taper down with the help of your dr. You cannot just stop taking it unfortunetly. Prednisone is one of those weird drugs that significantly helps some people & makes others much worse. If your neuro is really pushing for steroids you could attempt to take Solumedrol later on. It’s an infused steroid and doesn’t cause as many side effects. It MIGHT work better for you.

      I hope you feel better soon.

    • Anonymous
      December 8, 2007 at 8:46 am

      My neuro. has me on 900 mg methylprednisolone divided over 2 doses a week and just switched me over to pill form from iv form… will be interesting to see how the side effects change….so far on the IV i just had sleeplessness and extremely heavy sweating…..even more interesting was the pharmacy yesterday that filled the thing with 8mg tablets cuz no-one in St. Louis stocked any larger pills…and of course it was med day and didn’t wanna take a chance on waiting till monday when they could get some larger dose pills in…was real fun chocking down 54 little pills all in one evening….lol

    • Anonymous
      December 8, 2007 at 12:30 pm

      Thanks to all for the info on Prednisone. I’ll have to look up methyl-prednisone to see what the difference is. But, 54 little pills, no thanks.
      I have also dubbed myself the Michlen Tire Lady. I have now blown up like one large balloon, esp.face. That, also, is from the steriod.
      Each minute of the day is different in what i feel and what i can do.
      I;’m not sure if the electric zaps or the dead feet and hands are worse.
      However, this cannot, and will not touch my spirit or faith.
      I’m more than CIDP.

    • Anonymous
      December 9, 2007 at 9:54 am

      I got weakness when I tried to taper my prednisone. I was on 60mg a day and everytime it was decreased even 10 mg every other day, I relasped. It wasn’t till it was replaced by methotrexate and IVIG that I was able to taper the prednisone and even then it has taken a year and I am still on 25mg every other day. The side effects of the prednisone are so nasty….michilan man weight gain, cateracts, britttle bones, sleepliness to name a few. I’m not sure what you are seeing the rheumy for but methotrexate is given to rheumatoid arthritis patients and that also works to suppress the immune system for CIDP. You might be able to get a two for one. Just a thought…..good luck. I know the weakness is a scary thing.

    • Anonymous
      December 9, 2007 at 11:51 am

      Thanks. I see a Rheumy as I was dx’d with Sjogren’s Syndrome, Fibro, and MGUS with an IgM spike, in 2002. These made me disabled. i was in a stable condition until after my total knee replacement in july 2007 and started have the neurological symptoms in Sept.
      It is unbelieable the muscle tone I’ve lost and the strenght. I was doing weights, walking, bike, etc after knee replacement and now am on a walker and some days have trouble moving with it.

    • Anonymous
      December 9, 2007 at 11:53 pm

      I know I have posted about this before, but I believe that I am one of the few on this forum to have had 21 months of weekly & twice weekly solumedrol infusions. I needed them at the time, it was either the steroids, or a nursing home. Yes, I was that bad, without them I had almost no use of my hands, could not transfer in & out of a wheelchair, actually could not even sit up in one, nor in a bed. So, at that time I know I needed them.

      Having said that, I have been off of them since Feb of 2004 (my CIDP was arrested by chemo in 2003.) I am still dealing with the after affects of steroids. I had cataract surgery in both eyes in the fall of 2004, I gained 80# in those 21 months, my bones are terrible (no one told me to take an extra calcium), I still have scarring all over from a rash they caused, etc… I wish everyone could do well on IVIG & try to avoid any long term steroid use.


    • Anonymous
      October 16, 2006 at 12:50 pm

      I am curious. As I read the many postings of people enjoying the affects of this condition, I notice that the most common treatment appears to be IVIG. yet many do not indicate good results, and some indicate ongoing pain.

      My Dr did not offer IVIG but immediatly put me on Prednisone. While in the Hospital they gave me high doses and when I was released I was on 80 mg per day. The intense pain subsided over a period of two weeks and I have been getting some better since. I am now (5 months later) down to 5 mg per day). Am I the exception? Does prednisone work for anyone else? Should I consider IVIG?

      Sounds to me like this condition is often very different for different people and there are few constants, other than being a royal pain in the @#&%. However it could be worse. I would not wish CIDP or GBS on anyone but at the same time there are a LOT of people in this world that I would not want to trade places with!!!!!!! I wish you all a good day!

    • Anonymous
      October 16, 2006 at 11:38 pm

      My initial treatment was Prednisone given by IV. I used that treatment for 3 years and then the treatment stopped working for some reason. I was then started on IVIG. I have had 4 treatments in the past year and I have had only 1 relapse. Before I started the IVIG I was using a forearm crutch or walker. Now I can walk unassisted. I highly recommend IVIG. It changed my life.

    • October 17, 2006 at 1:19 am

      I have taken varying amounts of prednisone for 6 years. It’s cheap and easy – even though it tastes disgusting.

      I saw immediate and wondrous improvements after my first couple of weeks on high doses although I have reached a plateau at 15 mg every other day. Further attempts to reduce my dosage cause an increase in symptoms.

      I will continue to take prednisone until I have serious side effects. Then I can explore the other options.

      I consider myself very lucky to be able to tolerate the prednisone long term. Especially since it costs me less than $5 a month after insurance and there are no needles involved.


    • October 17, 2006 at 9:07 am

      The IVIg stopped working for me so am going in every 6 weeks for 1000 mgs of Solu-Medrol IV treatments. Was going in every 4 but my bone density wasn’t the greatest so we’re going for 6. I also do 1000 mg of Cellcept every day. I still rely on pain meds and haven’t lost the drop foot completely but it seems to be keeping it down to a dull roar. I don’t like how cranky I feel and I seem more flustered with the disease itself but you do what you gotta do. As was said it’s alot cheaper than other treatments, with being on medicare cheap works.

    • Anonymous
      October 17, 2006 at 11:59 am

      Glad to know I’m not the only one who can’t stand the taste! Why can’t they make it coated? Since my official dx 31 days ago I have been on 80mg and have had 7 IVIG – I was making some great progress on the combination but now am battling a cold and am really stressed by extrenal issues so have taken a step back. The dr. says that it will be trial and error on med combinations to see what helps me recover and keep from relapsing again.

      As for side effects-I’m taking 20mg of prilosec 2x a day to keep from getting nausea and prozac to keep away the depression. I still find it really difficult to sleep at night and have even stopped napping during the day but need to take 3 Tylenol PM in order get some rest – any suggestions?

    • Anonymous
      October 17, 2006 at 12:51 pm

      If you check out the side effects of prednisone, you will find among them, depression, depresses the immune system and keeps one “wired” so that sleep can become nearly impossible! And what little sleep you get is not restorative. Steroids can be a temporary life saver but . . . Once you take 3 or more medications, then you can get a long list of interactions/side effects. Good luck.

    • October 17, 2006 at 2:52 pm

      Wow. Beginning high dose prednisone and a cold. You are really feeling miserable. At your stage of illness I was so volatile that I sent my son to Germany and started seeing a mental health helper to protect my life and my marriage.

      The good news is that the virus will pass and the prednisone might be your magic bullet to combat the CIDP destruction of your myelin. Keep a symptom diary so you can be impressed by your progress. The side effects of prednisone diminish significantly as the dosage is reduced. Hang in there. Your doctor is correct that each patient needs a different combination of treatments and only experimentation will get you there.

      Please consider adding more pills to your day. Between the CIDP and the prednisone you need additional nutritional intake: multi vitamin, calcium, antioxidants, etc. Wash them down with a glass of cranberry juice every day to combat the prednisone’s inclination to give you urinary tract problems.

      Above all, try to stay away from crowds where you might pick up another virus. Every time I get a cold I lose a years worth of progress. Argh.

      I have been diagnosed with CIDP since 2000. I have only been treated with prednisone (and neurontin for pain). When you are first diagnosed one is naturally and correctly disturbed by the possible side effects of long term steroid treatment. Try to remember that not every one will get every side effect. Prednisone is cheap and works for many CIDP patients.

      Here are some reference pages to help you weigh the pros and cons with your neurologist.

      My favorite page of prednisone information

      A very good explanation of side effects

      How doctors decide if prednisone is safe

      A technical page from NZ

      An excellent discussion of immunosuppressants in general

      More on immunosuppressants in general

      A nice resource for drugs and interactions

      I hope this helped,

    • Anonymous
      October 17, 2006 at 6:30 pm

      I was started on 100mg of Prenisone and then tapered down to 10mg and then stopped. At 20mg I started on IVIG every 4 weeks. I was off the Prednisone for two months and started to get worse and the pain came back in spades. ANyway my neuro, put me back on 10mg per day and I have been on that along with IVIGevery four weeks for two months. It is not getting worse as quickly but it is still progressing.

      hope this info helps

    • October 18, 2006 at 7:48 am

      I’m with Flossie on the vitamins and also drink lots and lots of water to keep everything flushed. My doctor suggested which vitamins to take and the amount of colds I got went down to a few a year. You need to remember to avoid sick people. It’s put a damper on your social life but that’s a small price to pay. Hope you feel better!

    • October 18, 2006 at 2:23 pm


      Something that might help your tummy is to remember to always take the prednisone pills with plenty of liquid and something fatty that will coat your stomach. I ate peanut butter sandwiches for breakfast until I was below 30 mg. every other day.

      Of course, peanut butter for breakfast did not help with the weight problem. I think a lot of CIDP victims were once type A scrawny active folks. The forced immobility and medications make weight gain another nasty symptom. So, even though you deserve the comfort of good food, try to avoid the whites – sugar, salt, fat and flour. Eat as much fresh fruit and vegetables as you can. Broccoli and bananas are your new favorite foods.

      This might be too late to help you, but perhaps another newbie will find this thread and realize that prednisone side effects can be mitigated.

      Flossie the Fluffy

    • Anonymous
      October 18, 2006 at 7:39 pm

      My thanks to all for the insite and sugestions. The most noticible side effect I have experienced for the prednisone thus far has been a bloated stomach and a moon face. There has been some depression but thankfully it has been mild.

    • Anonymous
      October 18, 2006 at 11:34 pm

      I was on 1,000 mg of steroids infused once a week for 21 months. The main side effect was weight gain (80#), but I also ended up needing cataract surgery on both eyes, & have much thinner bones. But this was a very high dosage, & without it, I would have needed to be in a nursing home. The steroids gave me just enough during this time to dress myself, feed myself, take my meds, & transfer from my power chair to the commode, to the bed, etc. My neuro told me that steroids are now the first course of treatment that he uses for CIDP.

    • Anonymous
      October 22, 2006 at 12:13 am

      I was originally put through ivig from 2001 until 2005 when I started having severe reactions – I was then moved to steriods – high doses and then lower (under 30mg per day). After a year I saw all the typical side effects – depression, lack of sleep, weight gain, mood swings, fatty build ups every where.

      I was diagnosed with a fatty mass in my chest this summer which they believe is linked to the prednisone intake and I have been gradual weened from the steriods. At loss as to the next treatment – since paresis is also a challenge for my system and the ivig causes reactions.

      I started relapsing a couple of weeks ago and they just started me on Gamunex ivig which does not have the additives that most of the ivig solutions have. I am crossing my fingers on this one!

    • Anonymous
      October 22, 2006 at 3:58 pm

      Hello from the GBS side of the fence. I have been following Flossie’s advice since I joined the forums several years ago as I take prednisone for major lung problems. She is correct, especially in regard to flushing your system.

      Am now down to 15mg/day (from 150mg several weeks ago).

      I also go to a psychotherapist who is an asthmatic and occasionally takes prednisone. There have been several times when we have both been on pred at the same time…not a pretty sight.


    • Anonymous
      October 26, 2006 at 1:34 pm

      I gained 40 pounds in two months on Predisone. On top of that it did not make me stronger. I’ve had CIDP for five years now. The only thing that has helped me is Cellcept (auto immune suppresant), Plasma Pheresis (106 treatments thus far) and lots of pain medication. I also exercise everyday. Exercise has helped my weight issue, weakness, fatigue, and even helps with depression (heaven knows this disease can be depressing).

      Keep taking care of yourself.

    • Anonymous
      October 29, 2006 at 6:47 pm

      New York Magazine just ran an article about a guy who stole $80 million from a hedge fund he ran. He was found guilty and sentenced to a term in probation, to stay close to home, wearing an anklet similar to the one Martha Stewart wore during her time for a white-collar crime. He borrowed his dad’s car, used a hacksaw to get off the anklet and flew to Greece on a forged passport. The cops were trying to find him in Greece, using his med prescriptions as a lead. [FONT=”Arial Black”]Believe it or not, the fugitive has CIDP and takes massive amounts of prednisone.[/FONT] Do you think he could use the prednisone defence in the second trial: “The meds made me crazy, your honor.”


    • October 30, 2006 at 9:19 am

      I use that excuse whenever I can, lol. Haven’t there been other cases where the defense blamed it on the steriods?

    • Anonymous
      October 30, 2006 at 3:59 pm

      May have been. They sure affect our moods.


    • Anonymous
      October 31, 2006 at 6:23 am


      Steriods are wonderful and really helped me with my breathing problems in the 1991 ff BUT

      After (1994 and 1996)four years of low dosage it had destroyed my eye sight and it required surgery to get my vision back. I complained of chest pains and my allergy doctor (wonderful doctor) knew something was not right (had not been diagnosed with CIDP YET) but no one would listen to her. By 1999 and unknown osteoporosis had destroyed my spine and required surgery to fix it.

      After thirty one years of symptoms of CIDP, was finally diagnosed with a peripheral neuropathy in 2000 and with CIDP in April 2004 when IVIg was started to which I responded in positive ways.

      Bottom line. If you have CIDP I would not stay on steriods for the long term. I would absolutely consider IVIg treatments and I would absolutely speak to the doctor in this regard. I am not a doctor and all I have is my experience and heaven knows we are all different but…steriods are wonderful and helpful…in the short term as all the medical literature on the subject states very clearly.


    • Anonymous
      November 3, 2006 at 10:03 pm

      I’ve now gone from 150mg/day to 5mg/day of prednisone and mood swings are still horrific. My psychotherapist, on 30mg/day because of asthma, reminds me that pred has a long shelf life…it lingers in the body after we stop ingesting it.


      Regards to all,

    • Anonymous
      November 4, 2006 at 6:47 pm

      Prednisone is a wonder drug. I take it for my asthma and mostly for my spinal stenosis. But the side effects are horrendous. Long term usage can mean your bones get weak and brittle, which could lead to hip replacements which scares the crap out of me. So againist Drs wishes I only take it when severely needed.

      When Marge and I are on Pred at the same time, you should hear our conversations, we talk as fast as a jet plane and tend to want to clean everything we see.

      It really is a great drug for so many different ailments, but it is also dangerous