New Development, Need Advice

    • Anonymous
      June 21, 2012 at 2:02 pm

      Hello All,

      I was diagnosed with CIDP a year and a half ago and have been getting IVIG every five weeks since then. Good news is that it helps me, however bad news is that I can go more than five weeks between treatments. When I talked to my doctor yesterday she indicated that because I have not been able to go longer, she wants to discuss with me other treatment options such as auto immune supressing drugs, she also mentioned steriods. I don’t want to do steriods and I think she agrees that there are to many long term side effects for someone my age (late 30’s). But I have three kids and work outside of the home so definetly worried about taking auto immune drugs. I think she is worried about me being on IVIG forever (said they don’t know what if any long term side effect there may be) and also worried that will insurance continue to pay for that indefinetly. Not sure what to do. Any advice. Have any of you had additional success with auto immune drugs? Do you continue to get IVIG in addition to that? Just worried as not sure what else there is to try. Any other drug options I should consider instead? I know stem cell is a big topic on here but that seems to be not an option for those who IVIG works for. Any thoughts or advice is much appreciated.

    • Anonymous
      June 21, 2012 at 5:54 pm

      Do you have one infusion every 5 weeks?? To me that is not bad at all. I was having 6 a month and recently have dropped to once a week. We are all the difference with how we do with IVIG and other CIDP treatments.

      It’s good your neuro is concerned about you and your current treatment of IVIG (after all you have in your 30’s). How many CIDP patients does your neurp treat? I would check your insurance max coverage and maybe have another neuro’s opinion about other options (couldn’t hurt). I could not take steroids and the Methotrexate pills didn’t work for me either. Steroids are not meant to be used long term either because of the problems they can cause.

      I think you should be congratulated with working full time and being a mom”’ Let us know what you decide to do.

    • Anonymous
      June 21, 2012 at 7:20 pm

      I received infusions every other week for two years before my neurologist stopped the infusions in January of this year to see how I would do. I know of people receiving infusions for years and years. If the IVIG works for you, then barring any other issues, I would continue with the infusions if it were me. I was also lucky in that IVIG worked so well for me. I certainly would avoid steroids, immunosuppressants, and any other drugs unless absolutely necessary — especially if the IVIG is effective.

    • Anonymous
      June 22, 2012 at 3:15 pm

      Thanks! I feel the same way, if this is working, why add more on top of it. Guess my Neuro was more hopeful that I would be able to go longer between treatments by now, and thinking maybe adding a new drug would accomplish that. My Neuro does not have any other CIDP patients but the practices she is a part of does. I may need to get a second opinion if she pushes the drugs to much. Just hate to be on a bunch of stuff that has crazy side effects. Really can’t afford a weak immune system with three kids in daycard/school bringing home so many germs:) Thanks for all the advice and help!

    • June 22, 2012 at 9:37 pm

      Hello there- I receive IVIG and have been for almost 4 years first every week, then every 10 days and now trying to go every 2 weeks ( with not very good results so far I am afraid)- I started on Imuran at a low dose of 50mg /day as an immune suppressant to try to decrease my IVIG need from weekly infusions. I am not sure why they are recommending you add another med if your CIDP is controlled at every 5 week infusion. This seems like a very reasonable treatment schedule provided you are doing well, and tolerating the treatments well. IVIG has the best safety profile of all the CIDP treatments. Trust me, if I did not need weekly infusions and could have gone even every 2-4 weeks , I would not be on the Imuran . I tolerate it well in general, but get sick more often and fear long term risks. I would seek a second opinion if I were you at a center where they see a lot of CIDP patients. What part of the country are you in if you don’t mind me asking? There are centers of excellence listed on the website to consider. It sounds like you are not in a relapse or crisis where you need to make a decision quickly so don’t rush in and do your research. I went to Mayo clinic to see Dr Dyck and had and excellent experience . Good luck and I am happy to answer any questions!

    • Anonymous
      June 23, 2012 at 1:02 am

      My husband gets IVIG every month and has done since 2007. But he had to fight for it. After less than six months on IVIG, the neuro. insisted that he go on Immuran. Within 3 weeks he was in hospital with life threatening sepsis. After that he was pushed to go on Cellcept. He refused due to his horrific scary episode on Immuran. In essence we had to make huge waves over him being allowed to stay on IVIG. We had a huge show down and I posed the question to the neurologist, “Are you telling me that you are insisting that my husband take another drug with potentially life threatening side effects because the he is not worth the cost of IVIG?” I made it clear that I would go to the media if that was the case. They backed right off.

    • Anonymous
      June 23, 2012 at 2:56 am

      Laurel, good for you.

    • June 25, 2012 at 3:50 am

      jgl there are options other than the ivig. My Dr, like yours also did not see the ivig as a lifelong thing for me. Its important to find a dr you can talk to and one who respects your decisions. Whats more important is what do you want?? are you happy with doing ivig forever, if thats what it takes and it is helping you?
      See what your dr suggests then research it before making a decision. As for the sct I believe you have to have failed a few different treatments before you get accepted.

    • GH
      June 27, 2012 at 4:45 pm

      Steroids are a standard treatment for CIDP, and are used in conjunction with other medication with the dosage tapering down, to avoid long-term side affects. I took prednisone for about a year, with the dosage tapering from the initial dose to zero over that time. At the same time I took mycophenolate mofetil (Cellcept), an immune system suppressant, and I remain on that today. I had no side effects from the prednisone that I was aware of.

    • Anonymous
      June 27, 2012 at 6:31 pm

      You need to take into consideration many things when treatment is selected. i.e. if you already have borderline high blood sugar or cataracts or osteoporosis then steroids will exacerbate those conditions and are unlikely a good choice. If you have underlying conditions like diverticululitis or IBS or frequent bouts of pneumonia then things like Immuran or Cellcept can trigger the underlying infection and cause life threatening illness. So you have to be very informed and ask lots of questions before consenting to a treatment. Don’t just nod your head and accept the treatment presented as the right one because a neurologist wants you to have it. They see tons of people with varying medical histories and often you have to refresh their memories of your medical history. Unfortunately finances can play a big role in treatment options.

    • June 27, 2012 at 8:06 pm

      My daughter Emily has had CIDP for 5 1/2 years now & she has received more IVIG than anyone I have ever heard of. It took us 5 years to get to IVIG every 5 weeks. She is now moving to every 6 weeks.

      Over the years I have learned that just because the Dr wants to try something new – it does NOT mean you have to agree to it. You have the RIGHT and obligation to say NO if you are unsure about a new treatment plan. And if the dr doesn’t like it – then find a new one! Hopefully one that will listen to what you have to say & take your feelings into considerant.

      By the way – going 5 weeks between treatments is AMAZING!