Newbie here: CIDP and Covid-19 question
May 13, 2022 at 11:55 am
Diagnosed with CIDP a couple of months ago and just completed my second infusion. I’ve had slowly increasing nephropathy for about four years. Last August, I contracted Covid. I had been doubly vaccinated, but was hit surprisingly hard and have had symptoms, especially “brain fog,” ever since. Then, in November, my nephropathy symptoms starting increasing at a much faster rate. Now I have hand tremors and have lost enough balance that is it quite noticeable. Anyway, my question concerns the how CIDP and Covid are known to interact. I wonder, for example, if my preexisting CIDP explains why I had such a strong case of Covid that in some key ways persists to this day, or whether Covid has made my CIDP worse. I would be grateful for any information/insight you might be able to share. Thanks!
May 14, 2022 at 7:47 am
I had similar symptoms years ago. I/It was much worse than it is now. Along with CIDP, I had and was battling with Lyme, I had 3 different types of tick born bacteria. Have you been tested for Lyme? Go to a Lyme specialist.
May 23, 2022 at 2:09 am
I was first diagnosed (via nerve biopsy) with CIDP about 30 years ago. When I contracted COVID in Dec of 2020, the only thing that happened (except for a positive pcr test, of course), was that I lost my sense of smell. Not even my sense of taste ever went away.
I would be surprised to find anything other than anecdotal correlation between the COVID-19 virus and autoimmune CIDP.
May 30, 2022 at 3:49 pm
Thanks so much for the replies. Greatly appreciated.
July 22, 2022 at 4:24 pm
Have Cidp. As manageable w ivig for 2 yrs, every 2weeks, then every 3 weeks.
April 202 got covid. Not a terrible case, before vaccines. CIDP has regressed
terribly since. I wrote here about it…nobody replied w similar experience.
Have tried different doses and intervals, nothing has turned it around. Docs
say no evidence covid exacerbates CIDP ! Of course there is no evidence, nobody has done a study on it. Depressed, debilitated and disgusted. See my prior posts if you
can find them, I don’t know how to work this sight well at all.
July 22, 2022 at 4:34 pm
Thank you for the reply, Pammy. I am sorry to hear about all the trouble you are having. All I can for certain is that it’s really lousy to have both progressive neuropathy and long COVID together.
July 22, 2022 at 5:27 pm
More likely, the Covid affected the Cidp than visa versa.
Covid elicits a never seen before inflammatory response, immune response,
which is the cause of resulting deadly symptom response, since CIDP is an
inflammatory disease to begin with, AUTOIMMUNE MEDIATED.
Just my opinion. I had very mild original covid while a CIDP pt. 4 yrs.
I have read several posts that the milder covid cases, have the worst long covid
results. WHO KNOWS ?
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.
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 24, 2022 at 11:41 am
I think the lack of consistent up to date discussion here, other than Jim, is due to several reasons. Many have variants of CIDP, and with dx being so difficult and disease processes presenting differently in almost every case, as well as treatments varying depending on where one lives and what doctors are informed of newest treatments or willing to try them. I think the people that get a great result, have no reason to return here. Those of us that are or have been in a revolving door of different opinions of doctors, late diagnosis, minimal monitoring, no interdisciplinary care coordination, leads to apathy, depression, along with physical disabilities, and loss of quality of daily life activities. I, as I have said, had late dx, was fortunate to finally get the Cidp confirmed after a year of hospitalizations, surgeries, rehab, before my first IVIG infusion being treated successfully at a COE in NYC. I went from a wheelchair to walking but it took 2 yrs. Then my doc left clinical practice the same yr covid hit. I have regressed since. No doc I have seen will attempt any newer tx, just vary the dose and frequency of ivig, which is not working anymore, as I wrote about here in March. No comments other than Jim and a person from overseas that suggested steroids, which my docs will not consider. I try to see new docs, usually have to wait 3 to 4 mos for appt., only to be told not to come after they review my record, stating they wont know or offer anything new. I tele med once with A doc at Cedars Sinai in LA. He suggested Ritux and to insist to my NYC doc they try it. REALLY ? So, ill sum up that I think there is lack of regular communication here as people become frustrated and overwhelmed with the entire situation they find themselves in, the health care industry, and the lack of research and new approved, treatments for this disease and its variants. Now, with covid thrown on top of it , I and many others, according to my ivig nurse, have exacerbated, yet I can not get docs to even acknowledge that as valid. I have had new electro studies post covid, showing exacerbation of disease and I am told, it might have worsened without covid and there is no data to support that. People in this chain have dismissed the possibility too. I DONT EVEN CARE the reason for the regression. I am just looking for help, but it reaches a point that one is so exhausted, Overwhelmed by entire situation, the phenomenon of learned helplessness kicks in, Google it. So thats my opinion why isn’t more exchanged here. People that have been great results have no reason to come back here and those less fortunate find people like themselves, lost in this rip tide of dx variants, treatments or lack of, and poor outcomes. My symptoms began three mos after I had ankle fracture surgery. Prior to that, ran my own business, played golf, tennis, rode bike swam, ate healthy, had 2 dogs, traveled, took care of elderly parents, no health issues at all. Now, I can hardly walk into the kitchen, cant write. It’s not just the physical limitations, the constant discomfort is debilitating. The drugs that helped greatly with that, no longer touch the unyielding pins needles, pain, numbness,spasms, since covid. Its 6 yrs since surgery and this nightmare began. Those close to me, friends for decades have slowly disappeared as they have seen me deteriorate. I too check for updates daily…..crickets. The new treatments link, Jim posted, god bless him, took me to 2 videos one can only view after a maze of sign ups for another platform. My hands cant even do that. Sorry for the venting, just my opinion, and yes I know there are people dying of cancer I am told that on a regular basis as healthy people tell me how much worse it could be. I have science post graduate degree…I know that…it doesn’t help.
July 24, 2022 at 4:41 pm
I’m sorry to hear IVIg has stopped working for you. It never worked for me. There are some alternatives to consider and many are suggested in the following thread:
July 24, 2022 at 5:22 pm
Thank you for the reply. I know of most all of those treatments. I appreciate your concern and taking the time to suggest these. You wrote me in the spring under topic ” Help IVIG not working post covid 19 ” in Main forum.
As I tried to express above in my reply to David, cant get a Doc here to consider anything but IvIg as main tx and rx drugs for symptoms like lyrica, gaba, cymbalta, effexor, nortryptaline, alpha lipoic acid, B vitamins, medical mmj, PT, ….THEY JUST WONT DO IT ! Maybe medical legal fears, Age, indifference, the beating the NYC hospitals took during covid. The CIDP MD heavy hitters, that were younger and more pt. focused, that were mine and wonderful, left practicing for biotech pharma in 2020.What has happened since is above in detail, summary, I cant get a new doc to take me after they get voluminous record. I am considering making an appt with new ref., not sending record, just electro reports, explain situation, and if IVIG is all they will consider, I wont even send record. They all know each other and dont want to agree or disagree with a colleague. SMH
Thank you again. You are a wonderful kind person. I wish I was in LA, I telemed w Richard Lewis Cedars Sinai. He had many Ideas. Knows my doc, said to demand he consider alternatives at next appt. Did not go well. Tried to get appt with different doc here Lewis suggested. He is not taking new pts. Refd me to another, did not want the case. Chasing my tail.
July 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 24, 2022 at 6:48 pm
Thank You. I understand your opinion, but IVIG does not clean the blood. I think you are maybe meaning plasmapheresis, that cleans blood. Ivig are antibodies that block the bad one on auto attacking the nerves. See link. Immuno suppressants like you and others are on, suppresses the entire immune system, making it more susceptible to infection. Its a trade off, Im willing to try. The IVIG did work for me.Stopped after I got covid.
You must be logged in to reply to this topic.