Remission and IVIG

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    • #117347
      chirpybirdy
      Participant

      I am curious. I have had CIDP since 2010 and am doing great as long as I get my IVIG every 5 weeks. I currently tried to push out to 6 weeks between infusions and was successful. But I do know that I am not in remission because I did have mild symptoms at 5 1/2 weeks. Nothing horrible, just some heaviness feeling in legs and mild tingling. Went away after my 6 week infusion. I have never been on anything else but IVIG for 10 years. Well, I did try pred as my first treatment plan and had horrible side effects so stopped that. I was wondering if anyone has ever gone into remission with just IVIG or do I need to try another type of treatment like immunosupressants to achieve remission. My neurologist is a good doctor. I am at the U of M and he is a CIDP specialist. He is open to me trying other treatments but also said why change what isn’t broke. He thinks I can go into remission with IVIG. Since I get such good results with IVIG I am scared to mix things up and try something different for fear that it won’t work and I will start to get nerve damage. I was lucky to have a diagnosis of CIDP within months of onset of my symptoms – my CIDP was caused by the H1N1 Flu vaccine. So since I really don’t have any permanent damage that I know of I lead a normal life without any limitations except every 5 weeks having to have an infusion. I don’t get any bad side effects from the IVIG except a mild headache 2-3 days post infusion. I am at a crossroads and worried I will be on IVIG forever if I don’t try something else. I am 55 and looking at Medicare in 7 years and worried that Medicare doesn’t cover IVIG. Any suggestions would help me decide how to proceed with my treatment options or stay the course. Thanks.

    • #117350
      robm
      Participant

      Thank you for sharing. I am newly diagnosed so will defer the feedback on the use of IVIG to others more qualified. I find it very encouraging that you can live a normal life style albeit with infusion every 5-6 weeks. I was also diagnosed early and am curious how bad did your symptoms get and how long until you found relief with the IVIG and what is your dosage?

      I hear you on the cost piece as well. I am 55 years old as well as likely heading into the same situation you describe from a financial concern perspective.

    • #117351
      chirpybirdy
      Participant

      I started with tingling and numbness in my feet about 10 days after the H1N1 vaccine. It almost felt like my feet were falling asleep. Mostly at night at first when I tried to sleep. Then it started in my hands a little bit. I would drop stuff for no reason. I knew something was not right so I went to a neurologist right away. She did a whole bunch of testing and was able to diagnose me pretty quickly with CIDP. I never had severe pain or loss of the ability to walk or anything like that. Just numbness and tingling. I felt relief pretty quickly after starting IVIG. Forward 10 years now and I still don’t have much in symptoms as long as I get my infusions on a timely basis. We tried to push out to 6 weeks a year ago without success. This past month I pushed it to 6 weeks and did well so planning on staying at 6 weeks for a while. If symptoms return will go back to 5 weeks. I would really love to go into remission but wasn’t sure if that can happen with just IVIG. My neurologist said CIDP does sometimes burn itself out after years.

    • #117352
      robm
      Participant

      Thank you for sharing.It sounds like a very similar start to myself although the progression has not stopped on Day 5 post treatment. Fingers crossed… I see my Neurologist for a follow up in two weeks. This has also given me some additional questions for my Neurologist.

    • #117353
      Eviatar Kipnis
      Participant

      Hi Chirpybird

      I would recommend that you do what your Doctor says..
      I am 61, Cidp started 2 years ago (2.5 years after GBS) and was treated with IVIG evry 3 weeks.
      after 1 year tingling started again, and my Dr tried 60 ml prednizon daily. It whas a disaster. After 2 months in hospital I am on weekly plex and I can’t see the end.
      As long as it works (and it seems to work well for you)- you better stick to IVIG.

    • #117354
      David
      Participant

      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.

    • #117369
      Richard Burke
      Participant

      Hi,
      I was diagnosed with CIDP in 2008 and started IVIG treatment shortly afterwards. For the last couple of years I’ve been gettin 100g every 2 weeks and every other 2 weeks I get it twice. For most of this year I have seen very little difference after the infusion. Other individuals getting infusion at the same center have said the same.

      Recently I was seen by a noted neurologist and after an examination, etc., he asked me “How do you feel after an infusion?” I replied “ Better.” To which he then said, “No, what I mean, is what are you able to do afterwards that you could not do before?” My response was “I feel better.”

      That makes me wonder what other people are able to do after an infusion that they could not do before?

      After 10 years of infusions, I stopped having them. It’s been nearly 5 weeks since my last one – not very long and I’m still trying to determine if there is a difference.

    • #117473
      chirpybirdy
      Participant

      Hello Richard. I recently pushed my infusion out from 5 weeks to 6 weeks to see if symptoms came back at the further out date. Well, I did good and made it to 6 weeks without any problems so I was thinking this is great! Maybe I don’t need IVIG anymore. But within a few days after the 6 week infusion I started with a mild buzzing in feet and aching calve muscles. I thought maybe I just over-did it with exercise. But the symptoms did not go away even when I stopped taking my long walks so I now know it was my CIDP active again because I pushed my infusions to 6 weeks. So we started back up at 4 weeks again. I felt great this past Friday after the 4 week infusion so I thought I was back on track. But within 3 days of the infusion the buzzing and calve pain has returned and now I also have week knees when going down stairs. So somehow I messed up my system and now have active CIDP and am not responding to the IVIG anymore. It is a bummer as I have always had great response to IVIG. I don’t know what to do at this point. I am just pushing through the symptoms right now in hopes that my disease evens out and goes back to being symptom free. But it will be another 4 weeks until my next infusion. I am worried my nerves are not being attacked and might result in damage if I don’t do something. I don’t want to go high-dose IV Steroids (what my doctor suggested if things don’t settle down). Was thinking maybe PlasmaExchange??

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