chirpybirdy

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  • 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.

    September 1, 2021 at 9:03 am

    I have been on IVIG every 4-5 weeks since 2011 without any problems. I get 35 grams of Gammunex IV every 5 weeks and don’t need any steroids. So going on 10 years and I am still getting good response from the IVIG. But I cannot stop the infusions without consequences. I tried to push out to 6 weeks between infusions and had symptoms come flooding back. So I know my disease is still active after 10 years – I have not gone into remission. But as long as I am responding to the Gammunex I will stay on it. My functioning is pretty much normal as long as I get my infusions on time. Good luck to you!

    March 22, 2021 at 4:18 pm

    I was diagnosed with CIDP back in 2011 and it was caused by the H1N1 Flu vaccine. I currently still receiving IVIG monthly or I relapse. I just got my 1st dose of the Pfizer vaccine today, March 22 and only have a slight sore arm. I am scheduled for the 2nd dose on April 12. I am hoping still no problems especially causing any problems with my CIDP. I was very reluctant and almost didn’t go through with the vaccine. But weighing the risks of having Covid-19 and possibly having a severe reaction I decided to take the smaller risk. I will post on April 12 to see if I have any problems with the 2nd dose.

    January 28, 2021 at 9:05 am

    I would be interested to find this out too. I have had CIDP for 10 years and over the last 6 years or so my liver function tests always run slightly high. They stay about the same over the past 6 years only raising a few numbers but are on the rise. My neurologist said that is could be autoimmune hepatitis and that for now all we can do is watch it. There is no test for autoimmune hepatitis. He said that because I have one autoimmune disease my chances of having another are high. So for now I just have my liver function tests every year and watch and wait.

    September 14, 2020 at 9:16 am

    I was symptom free for years! I was on a maintenance dose of IVIG every 5 weeks of 35 grams. My neurologist thought maybe I was in remission so we decided to try and push the infusions out to 6 weeks and see what happened. I knew before I made the 6 weeks that I was not in remission! My symptoms of CIDP came flying back. I was miserable and very scared too. We had to drop me back down to every 2 week infusions. I stayed at the 35 grams but had to stay at 2 weeks for a few months.. then went to every 3 weeks… and then every 4 weeks. I had to stay at every 4 weeks for a long time. On my next infusion I am going to try and push back out to every 5 weeks. With any luck I will get there and be able to stay there symptom free. I don’t think i had any new nerve damage caused by the return of symptoms because we jumped right on increasing the infusions. But I now know that I probably will not go into remission with IVIG treatment because I have been on IVIG for 11 years now. So if i want to try and knock this into remission i have to try a different treatment route such as high-dose steroid infusion push or one of the immune suppression drugs. At this point, since I get good results with IVIG i don’t want to switch. Why fix something if it isn’t broke! Good luck to you.

    March 24, 2020 at 4:14 pm

    Yes, that is true. I just slipped under the limit when I filed.

    March 10, 2020 at 3:48 pm

    My CIDP was definitely triggered by the H1N1 Flu vaccine I received in 2010. I was perfectly healthy, young, no other infections or on any medications. I got the vaccine and my symptoms started within days of the vaccine. I had a very classic case of CIDP and was able to pretty much conclude the vaccine was my culprit. No other explanation. My first neurologist was the one who suggested that is what triggered my CIDP. I was also able to get compensated from the vaccine fund (not much but something to help off-set my monthly medical bills). So, I do believe that vaccines can trigger your immune system to go rogue and start to see your nerve coating as a foreign invader and attack. Sadly, I won’t ever let myself have another vaccine for fear it will make me worse. That is just my personal choice.

    March 10, 2020 at 3:41 pm

    Hello Jim – you said you had 80 PE treatments followed with Rituximab and it seemed to have cured or at least put you into remission. How long have you been symptom free and do you have to remain on the Rituximab indefinitely or was it just a short period? I asked my doctor about Rituximab on my last appointment and he didn’t say much about it. I have heard good things about this treatment and that others have been put into remission after being treated with it. But what are the risks and side effects long-term?

    March 5, 2020 at 4:17 pm

    I was able to successfully bring suit against the vaccine fund and did not have any legal fees. The lawyers did everything for me and no costs billed to me. It was done all over the phone and internet as my law firm was located in Boston. It took about 3 years to go through the process. I had to reject a few offers as I was low-balled two times. But we finally agreed upon an amount and I accepted. I could have rejected the last offer but then my case would have gone to a live trial in front of a judge and I would have had to travel to Boston. My lawyer said that if for any reason the judge ruled against me I would not receive a penny (and he has seen that happen many times). So i accepted the final offer (lower than what I though I should receive) but it was something to help offset the cost of IVIG infusions for life. I think there was a time limit you had to file suit after the initial diagnosis too.

    March 5, 2020 at 4:08 pm

    Is the effects of Plasma Exchange permanent or do you still have the bad antibodies attacking your nerves and require treatment to keep it at bay? I am on IVIG and starting to not respond to it the way I used to so seeking other treatment options. I don’t want to go the IV Steroid route as the side effects to me are just too much. I am afraid to go on the immune suppression drugs also. So i mentioned PE to my neurologist. He said he usually only does PE on worst case patients and wouldn’t recommend PE for me. I am confused. It seems like a good option to have the bad antibodies taken out and replaced with new plasma.

    March 5, 2020 at 3:46 pm

    Hello Ron, my CIDP was definitely caused by the H1N1 flu shot i received in 2010. It was within 10 days of the shot that all my symptoms started up. I had a very classic case of CIDP and was able to get diagnosed within 6 months and start IVIG so I didn’t have a lot of permanent damage to my nerves. It was hard to convince my neurologist that the flu shot caused my CIDP but it was the timing that really helped him believe it was the flu shot. Plus, I was perfectly healthy prior to the vaccine. That being said, I won’t ever get another flu shot again nor will my daughter just in case the reaction my body had is hereditary.

    February 20, 2020 at 8:34 am

    Hi Mark, thanks for your sharing your experience. I do have a good neurologist at the University of MN. He is a specialist in CIDP. He did suggest trying high-doses of IV steroids for a few months to try and put the immune system into remission. But I am very worried about being on steroids because of all the bad side-effects that linger way after you are done taking the steroids. I did do a brief trial of oral steroids back in 2011 when first diagnosed before trying IVIG. I was miserable with not sleeping, shaking or tremors, agitated and generally feeling icky. So I stopped taking them. I might have to give it another go if IVIG isn’t working on its own. I am going to call my neurologist today and try and get another dose of IVIG but start over with a loading dose and then every 2 or 3 weeks again for a while to see if it puts my immune system back in check. I was doing so well before this happened. The weird thing is most of my symptoms are at night when I try to sleep. During the day my legs feel much better but then at night the creepy-crawly sensation returns, the aching calve muscles and burning sensation keeps me awake not to mention the anxiety about the disease. Why only at night I wonder? Maybe because after being on my feet for the day the resting period allows everything to come to a head. Who knows. But it is now exactly 2 weeks from my last dose of IVIG and I am not evening out. So I think i need something.

    February 13, 2020 at 12:48 pm

    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??

    December 16, 2019 at 11:47 am

    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.

    December 12, 2019 at 5:12 pm

    The flu shot triggered my CIDP 10 years ago so I will not get the flu shot anymore. I also have been afraid to get any other immunizations for fear that they might trigger my CIDP to become worse. I guess I am just being cautious as I don’t know why my body reacted to the flu vaccine the way it did and will probably never know. But not willing to take a chance it will do the same with other vaccines.