May 31, 2023 at 10:47 am
How are you doing now?May 30, 2023 at 11:08 pm
Welcome. Sorry, you are dealing with this. While I am not a doctor, I have CIDP and was pretty certain you needed an elevated protein in your spinal fluid to be considered CIDP. Not to say, that whatever you have stinks!
I’m hoping people will chime in here. This forum isn’t the most active but it is a lifeline for hope for people in the dark about what is happening to them. I would also say, that the intestine issue would seem to not be in conjunction with the neuropathy. The neuropathy was probably already happening for several months to get you to that point of weakness in November. Again, just an opinion.
What city are you in? Maybe someone can give you a good referral.
DaveFebruary 6, 2023 at 11:51 pm
Thanks for sharing. I hope this gets better for you. I wish this forum was more active. I check it almost every day. I have no experience with IVIG, been just using Cellcept.
I was doing great through last Summer when I dared to reduce my dosage. Doc and I agreed on reducing my daily 2000 mg to 1500. I went to 1000 on my own and about 3 months in I realized 1000 wasn’t enough. Back at 1500 now and doing better but considering going back to 2000 mg. I’ll be monitoring and seeing how it goes.
I was going to get the shingles shot also but when I found out it was a live vaccine, I didn’t get it. I do need a pneumonia shot and will consult my neurologist. For work, I was supposed to get a Yellow Fever shot last year, but luckily they accepted a waiver. That’s another live vaccine.
Feel free to post here, I’m always checking to share conversations, experiences, and knowledge.
DaveJuly 24, 2022 at 6:18 pm
That’s horrible. I will see my neurologist for my 6 month check-up in late august here in Chicago and will try to ask about others out of state and what they may be able to do.
I’m a big fan of taking medication to prevent your body from attacking itself vs IVIG essentially “cleaning” your blood and it only lasts until it gets “dirty” again. That’s just my simple way of looking at it and was my decision when I was given OPTIONS to treat my CIDP back in 2019.July 23, 2022 at 8:46 pm
I’ll also add, that I am a Cellcept taker and not IVIG. I am so grateful I chose Cellcept over IVIG and it worked. I’d like to taper off of it eventually but after being on it for over 3 years, it isn’t quite the time yet. I did get COVID 2 weeks ago and tested at home positive on a Sunday. I went to 3 different places before I was eventually able to get Plaxlovid later that night. Again, I was being my best advocate and wasn’t going to stop until I secured the antiviral drug.
I had body aches, chills, and more. Took the antiviral and the next morning all my symptoms were gone and tested COVID negative a few days later.
Stopped the Cellcept for 7 days while i had COVID. My legs are now a little buzzy but I expect them to improve. Prior to this episode of COVID, I was feeling pretty “normal” for a bit of time.July 23, 2022 at 8:38 pm
I agree, that the forum isn’t as active as it could be. We all have to be our own best advocates to fight this disease and conversation is key. I have this site opened in the first tab position on my browser and look at it every single day. I’ll try to reply if I feel I can share good information. It would be great to see hundreds of us talking here regularly.
The only person I see reply regularly here is Jim. It would be great to get stories from many here because everyone’s story is so different. It would help us all make informed decisions.May 2, 2022 at 3:02 pm
Interesting that you are saying this cause I was thinking something along similar lines. I take Cellcept for my CIDP which works pretty well. But when I get a little bug, it lingers for weeks. I’m actually going to see my GP tomorrow and am going to inquire about monoclonal antibody treatment. Something makes me think this could be a useful compliment. But yes, seems to make sense a loading dose every now and again could seem beneficial.November 26, 2021 at 3:15 pm
Read my story before getting IVIG. I never liked the idea of getting hooked up to a pump every month forever. Plus, IMO, it isn’t as effective. Others will argue every case is different and it probably is.
Sorry, you got this ridiculous disease but sounds like you caught it early as I did.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.September 14, 2021 at 1:54 pm
I started Cellcept a little over 2 years ago and have been fortunate to be doing really well on it. I was taking 1000 mg 2x a day and last month we now dropped 1 500 mg pill a day. I’m hopeful that in 6 months I’ll still be in good shape and perhaps reduce further.
I mention this because I think you should research cellcept before going to imuran. My research shows imuran has way more side effects. I’ve had none on cellcept.
Also, cellcept vs IVIG. My belief is cellcept will, over time, help retrain your immune system from attacking your nervous system. The way IVIG is implemented, it doesn’t act the same way and I can’t see how you can get to a state of remission.
I also communicated well with my doctor on dosages, as we increased or decreased appropriately based on my feedback and my own suggestions. Be vocal as to what you want based on how you feel.March 9, 2021 at 12:30 pm
Thanks for the reply Mike!January 8, 2021 at 11:23 pm
When your immune system is now fighting an infection or a virus, it changes your normal status cause your body now needs to fight the virus, and your antibodies target it. In the interim antigens that affect our condition don’t get knocked down to the level, we are used to when our body is in a healthier state therefore we start to feel symptoms of CIDP again. Hopefully, that makes sense and hopefully, I said it correctly.January 8, 2021 at 5:57 pm
I at one point used to get tightness in my forearms. So I would say that’s the same as calves since it’s the extremities. I’ve used prednisone and have had good success. Been on Cellcept since May 2019. I noticed I get the tightness if I started getting sick with anything else, like a cold or something which makes sense.September 22, 2020 at 7:55 pm
Why aren’t more people here using Cellcept as a solution? I take 1000 mg 2x a day. The drug works on your system daily vs IVIG which from my point of view isn’t going to be as strong on day 30 as it was day 1. I haven’t heard recovery stories of people on IVIG but I have with Cellcept. I read what happened to you Sandra and it is upsetting and I can only imagine what you’ve been through. I was lucky similar to JD to get on it early. With your surgery and expectations, I can imagine it would be very difficult to guess you had an autoimmune disease, as did I which was caused by shoulder surgery.August 25, 2020 at 5:01 pm
OK the post above is not from me. Strange.