The doctors don’t know, it’s a total crapshoot. My doctor asked when diagnosed if I wanted Prednisone, IVIG, or Plasma. I choose Prednisone along with Cellcept and am doing excellent thankfully. Doctors DO NOT know what will work better for you, it’s all a guess. I have yet to hear of someone having their CIDP go into remission on IVIG alone. If there are people out there, I’m happy for them and would like to hear about their experiences in detail.

Yes, there will probably be some side effects from the Prednisone but those can be overcome once you get off of them. I’m taking Cellcept twice a day am happy this is my route versus getting hooked up every month. My guess at some point in 2020 I’ll lower my daily dosage of Cellcept and see how it goes. I’m hopeful it will go well. Maybe doing IVIG and Prednisone at the same time makes the Prednisone experience worse. If that’s a possibility, I’d start the Prednisone at the end of an IVIG cycle.

Rob,

My symptoms were similar to yours when I was diagnosed in March/April. I did not do IVIG, instead high dose prednisone for about 10 weeks and then started tapering to zero by mid-October. I also took and currently take an immunosuppressant drug. I’ve been off of the prednisone for 2 months and I can say I feel like I am basically back to my old self except for the fact I’m a bit out of shape but that will correct itself as I start to workout again now. Your nerves will need all of 6 months to heal before you feel perfect again so keep that in mind also. I have yet to really hear about anyone going into remission by only doing IVIG. Prednisone is a huge help even though there are side effects, you have to go into the treatment plan knowing you are going to get off of it and replace it with an immunosuppressant drug. I am a 50-year-old male and was just under 200 lbs before treatment. Now I am 216 pounds but working my way back to under 200. I think I will get there in a few months.

I haven’t had any major side effects from the Cellcept. In theory, it lessens your immune system so healing from a bump or bruise or cut takes a little longer, but I’ll deal with that. while I am about 3 weeks away from being prednisone free, I anticipate continuing the Cellcept for probably at least a year. My gut feeling is that when I eventually taper off of the Cellcept, my CIDP may also be in remission. I think this was a good formula and a good choice for me. I’ve had a bit of weight gain and bloating from the prednisone and some minor withdrawals generally every time I drop in dosage.

I started 80 mg in April, went to 70 then 60 and like you didn’t feel like I was at a high enough dosage to “kick it”. I went to 100 mg for the entire month of June and felt fantastic. Dexterity / Endurance is the hardest part to get back, will take a lot of time. Your nerves can heal if not fully damaged and takes a minimum of 3 to 6 months. Late May I started taking Cellcept to replace the Prednisone.

I started tapering July 1st from 100 mg and am now down to 15 mg and plan to be at zero soon. Every time I taper it seems like the first couple days is a transition as my body adjusts so I’m not 100% but still functioning well during those days. I’ve gained about 10-15 lbs, all in stomach and face. I feel really good but I realize it will take many months to work my endurance back. The side effects of prednisone obviously aren’t desired but for me, it was a necessary evil to get to point I am at now because before jumping on the Prednisone I was in a fast downward spiral and it wasn’t pretty. I’m fortunate that this seems to have worked for me up until this point. Everyone’s experience will be different, this was mine.

I chose Cellcept over Imuran because my personal research seemed to reveal fewer side effects.

Chirpy, looks like you are right on top of things which is great!

Broudie, I haven’t had any side effects with the Cellcept. The Prednisone has my face and stomach bloated for the time being and as much as I don’t like that, I’ll deal with it. I drop to 80 mg next week and will continue to taper until October or so. So in the weeks ahead, I’ll soon know if the Cellcept does what it should. I am optimistic it will and will keep everyone updated. I’ve seen formulas online for initial prednisone dosages based on weight. 60 mg initial seems a bit light. My max dose could have even gone to 140. My highest was only 100. So long as you taper properly, I personally think it’s the way to go even with some side effects. It beats having you nerves eaten away at any more than they have at this point. If you are still at 40 and feel it isn’t enough, simply reach out to the doc and tell them you want a higher dose. If they don’t allow it then you need a new doc imo. As you said, you need to get over the hump and I know what you mean by that.

WOW! Your doc is under medicating you! How much do you weigh? I’m on the same timeline as you with the same symptoms this past winter. Started 80 mg in April and turned around quickly. After 4 weeks I was down to 60 mg and symptoms crept back and I told my doc I wanted to go back to 80 and he agreed. Started an immunosuppressant drug at that time also. After 2 more weeks at 80 mg, I suggested to got o 100 mg because I felt I needed a little more to overcome my immune system from acting myself while it takes 2-3 months for the immunosuppressant drug to kick in. 2000 mg of cellcept, btw. So I was on 100 mg prednisone the whole month of June and feeling near 100 percent. Now I will be tapering 10 mg every 2 weeks to get down to 20 mg sometime in October and hopefully, the immunosuppressant drug does what it should do. What city are you in? I’m in Chicago and there are some good docs here with experience with this disorder. You have to speak loud to your doc about what you want. They should respond, and if not you need to move on quickly. You can’t let your immune system to continue to eat away at your myelin. You need to put it in check and get the healing process started. The longer you wait, the more damage occurs and the harder the repair becomes.