Relapsed-any suggestions
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September 26, 2021 at 8:15 pm
After my second Moderna Covid shot in May, the very next day I started to get mild numbness in my hands.
Each month it has incrementally gotten worse until it snowballed over the last two weeks into a full blown relapse.
My hands are numb, my forearms ache, my calf muscles are weak, my toes are numb and I can barely move them and my ankles are stiff
I wobble when I walk and am using a cane when needed.
So I take IVIg every 3 weeks, 100mg, 200mg of Imuran daily, and my doctor put me on 40mg of prednisone a day last Friday.
I have lots of energy, but no physical improvement.
Any suggestions as to what else I can try?
I forgot how miserable this disease really is.
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September 26, 2021 at 9:39 pm
A rapid onset of CIDP symptoms and worsening conditions are best treated (in my opinion and based on my experiences with the disease) first with 3-4 days of Plasma Exchange, followed by 8-10 days of IVIg or SCIg. Sometimes an immunosuppressant drug may be needed to help the treatment to work.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So the order of treatments would be important for best results.
IVIg never worked for me. I kept getting worse while on it. Then I transferred to a center of excellence where the neurologists had extensive experience with GBS/CIDP. They put me on a combination of Plasma Exchange and Prednisone. Within 2 days I felt improvement.
Unfortunately, Prednisone can have many side effects and I seemed susceptible to most of its side effects. If I had to do this again I would get an alternative to Prednisone, I have since learned there are many.
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September 27, 2021 at 9:23 pm
What are the alternatives to prednisone. If my doctor ever responds to me, I’m going to ask about cellcept.
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September 27, 2021 at 4:51 am
I’m not sure if it relates to the Covid shot, but I did receive the Pfizer shots.
I originally suspected that my CIDP was caused by Lyme which I was treated for.
I didn’t see any progress with my CIDP until after I was treated for Lyme, which I found out that I had 3 different types of tick borne diseases. After a long battle with Lyme, then I seem to make progress with my CIDP. It may be a coincidence but, I’ve also had a CIDP relapse. So now I have 2 suspects.
I suppose I should start by seeing my Lyme doctor and get tested for more Lyme type infections. If my Lyme tests come back negative, then I’ll have to suspect the Covid shot.
Im beginning to think God hates me.😢 -
September 27, 2021 at 9:12 am
My CIDP was caused by the H1N1 flu vaccine so I was very hesitant to get the Covid vaccine for fear it would reactivate my CIDP. But I was more afraid of getting Covid and dying in the hospital so I went through with the vaccine. I guess I was lucky, I didn’t have any problem. I got the pfizer vaccine. My neurologist said that the way the H1N1 vaccine and Pfizer vaccine interact with your immune system was completely different so that he said I SHOULD be ok getting the Covid vaccine. But no guarantee that it won’t cause a problem. I still don’t know if I will get the 3rd booster if offered or not. Why play with fire. I was good for the first two but who knows if the 3rd one will be my downfall.
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September 27, 2021 at 9:35 pm
For some alternatives to Prednisone please read the following forum thread:
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September 30, 2021 at 7:19 pm
So ended up in the ER this morning. Could hardly walk. My friend had to basically walk me to the car, lifting my legs to get down some steps, into the car. Was in awful pain. They gave me some nifty pain killers, which actually help.
They then sent me to their infusion center to get my second dose of IVig. Without the excruciating pain, I could feel the IVig working. Enough so, I could make the two steps into the house, which I couldn’t do yesterday.
Even better, my doctor finally seems motivated, and we are ditching Imuran and replacing it with CellCept, which from what I’ve gathered from the forums seems to have helped a lot of people here. Additionally, IVig treatments are going back to every other week for 6 months.
I’m excited to try CellCept and hope it helps me as much it has helped others here.
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October 1, 2021 at 11:33 am
Bryan, I hope Cellcept works for you! It has been for me so far, and very well. It takes a few months for it to get going in your system, so be patient. I have no clue if IVIG contradicts Cellcept usage at all, ask your doctor. I used Prednisone for 6 months while the Cellcept settled in.
My Dosage was 1000 mg 2x a day. I did that for a year and a half and last month we dropped 1 pill. So now I am at 1000 mg in the morning and 500 mg at night. I’m 6’1″ and 200 lbs if that matters. 52 years old now.
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October 1, 2021 at 9:45 pm
Thanks for info on Cellcept. I’ll keep in mind the lag time.
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October 1, 2021 at 7:35 pm
Bryan, you might consider asking your doctor about getting IV Solumedrol prior to your IVIG infusion. I currently take 1500mg cellcept twice a day, IV solumedrol before my IVIG every 5 weeks. No side effects from the cellcept. The solumedrol keeps me awake for hours and hours (even with a sleep aid), but no other side effects like I had with the oral prednisone. Hoping to push the infusions to 6 weeks by the end of the year. Have to get labs every 3 months, mine come back with no problem areas. Also – I have chose not to get the COVID vaccine. I won’t get a flu or shingles vaccine either.
Best of luck
Kathy
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October 1, 2021 at 9:47 pm
Thanks for sharing on the cellcept and the solumedrol. I’ll ask him about it.
I knew I shouldn’t have gotten the shot in my heart but I let the hysteria carry me to my decision. One, at the moment, I deeply regret.
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