Cidp after Covid

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    • #117851
      pammy
      Participant

      Cidp, 5.yrs after metal implant ankle surgery, late diagnosis.

      Have been on Ivig over 4 yrs. got me out of wheelchair to walk with cane.
      Was on Effexor 150 per day. Covid last March from ivof nurse.
      Extreme exacerbation, ivig not working anymore, docs don’t know why.
      Effexor now makes tightness tingling worse, nothing working.
      Docs don’t want to try anything new, too much unknown…help, in agony ?
      Anyone else?

      Pammy

    • #117852
      Mike
      Participant

      Seems like you have multiple options to try if you already haven’t done so. If you already had covid, maybe ask for them to try ordering IGG antibodies to be sure. If you have immunity why wouldn’t they be confortable using an immunosuppressive such as prednisone, imuran, cellcept, cytoxin or rituxin if you are in agony? Although these drugs do suppress the immune system what would be their concern if you already had covid? What about plasmapheresis? Gabapentin or lyrica for the tingling?

    • #117854
      pammy
      Participant

      I had the antibody test, months ago.
      There concern for these other drugs is the myriad
      of side effects and risks for every other infection
      on earth, not just covid. Gabapentin, once i passed 200 mg, which is non therapeutic, I cant stay awake, lyrica has had no affect, is like a sugar pill for me.
      Plasmapheresis, is inpatient, pic line, during the highest number of covids on nyc since last year, and a new starin.

      I have manhattan docs, centers of excellence.
      They feel its covid antibody inflammation, which
      they don’t know enough about, that is the cause, and
      there is no data, studies, enough cases to even guess
      what to do responsibly. I am the only cidp,
      covid pt. my doc has. I have googled it…NOTHING
      I was thinking, regeneron,or remdesevere, as that is given to hinder the covid inflammatory response, specifically. Maybe that is still in me, as indicates in the antibody test.
      Docs, hate to have suggestions made to them about drugs, or anything…too much ego, and they hate that they dont know, and since covid in nyc, I can sense the change in their attitude in seeing pts in full ppe, at these major hospitals, they r uncomfortable, hot, typing their own notes during visit so not to have another person in room like prior to covid doing chart notes, making them impatient.
      The immune response is different now in me, or the ivig would still work..nothing else changed.

      I appreciate your input, if you hear of anyone with my situation please let me know. This is making my life
      no existent right now. Hands feet, pain unyielding.

      Pammy

    • #117856
      Walter K
      Participant

      Hi Pammy
      I agree with Mike to some extend.
      Prednisone is probably the esasiest accessible and should take the edge of it right away after 12 hours. Of course doctors always want to get you off it a.s.a.p. but it should get you through the worst over the next few months.
      If your current condition is covid related then you could expect it to last several months since I heard a lot about people having a long recovery time so it seems to hang around quite a bit.
      I found a dose around 50mg very effective. Lower than 40mg does not do as much.
      Other drugs like Cellcept can take a long time to work (months according to my immunologist) and may not do the same.
      I believe a general practitioner can prescribe Prednisone, at least that is the case here in Australia. Just shop around.
      Of course Plasma exchange would be great but I underdstand it must be very difficult to get these days.
      I just got off Prednisone this week after being on it for 5 months.
      My own experience is ( and this time my neurologist even agrees) that neuropathies can flare up quite a bit during or after infections, so no surprise to hear you are going through a rough patch.
      I hope you get better soon.
      It would be interesting to hear how people with CIDP react to the covid vaccine…

      • #117873
        pammy
        Participant

        Thanks Walter,

        Did you go into 50mg prednisone of titrate up in 10 mg doses ? I am 110 lbs. , i think weight matters ? Did you have side affects and in what way did it help ?

        Do you know about pulsing corticosteroids ?
        Ive seen that many places, not sure if its iv or what the pulsing means…take infusion then stop, then start ?

        Thanks

    • #117874
      Walter K
      Participant

      Hi Pammy
      I am 83 kg and started on 50mg. The most I took was 75mg for a few days and then reduced back.
      I never heard of pulsing corticosteroids.
      I did not have any noticable side effects from prednisone but had a great appetite and gained a few kg’s. Also with the last blood check the blood sugar levels were too high and it can cause you to become diabetic.
      I your other post here https://forum.gbs-cidp.org/forums/topic/lower-leg-and-feet-muscle-tightness/
      you described your symptoms more in detail and I did not find that prednisone helped me with these.

      Here is how prednisone helped me:
      – reduction or elimination of all inflammatory processes in my body (best at above 40mg at my weight of 83kg) I suffered inflammation in the back and one foot joint, all were gone for 5 months but now reappeared after coming off prednisone.

      – minor reduction of twitching in the legs

      – extreme increase in energy. I was completely exhausted with not much energy before prednisone. My neurologist always said that would not be normal for CIDP or neuropathy to be exhausted which I find hard to believe. It must have been the inflammation in my back which caused the exhaustion. My believe and that of a few other practitioners is that the inflammation also caused most of my symptoms if not even the neuroathy.

      – reduced or eliminated swelling in my legs which I had after receiving IVIG for a week

      It may not be for everyone or for every situation. For me it was worth a try and helped me learn more about my disease and my body and pointed me in other directions now to further decrease or eliminate inflammation in my body. The good thing is that it does show to be effective within hours and you can stop at any time if you find doesn’t help.

    • #117875
      pammy
      Participant

      Thank you.
      Don’t know who your neuro is,but fatigue is a hallmark
      of the disease process. (Back pain can be tiring of course.) Spine is CNS central nervous system, by definition this is peripheral nervous system, peripheral nerves. The prednisone helped fatigue and back pain , because steroids give one more energy, that’s why they are illegal in sports, and its a powerful anti inflammatory.
      Everyone seems to be affected differently, and not sure
      from what I read here, CIDP is the correct diagnosis, for many posts I have read. I am in the U.S.
      and diagnosis, treatments, symptoms defined for Cidp in
      Australia, for instance, seems to be completely different than here. I am more confused and bewildered
      since coming on this site and reading all the different cases, treatments, scenarios and outcomes, than before.

      Thank you for sharing.

    • #117876
      Walter K
      Participant

      I could not agree more!
      I am not even sure I have CIDP and would not be surprised if a high percentage of us here have been misdiagnosed.

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