Trying to Cease IVIG

    • Anonymous
      February 11, 2008 at 5:29 pm

      Lourdes got me wondering in the thread entitled “Help.”

      My doctor started me on CellCept to slowly get me off of IVIG. I’ve been on IVIG for a couple years with decreasing times I get it. I started every two weeks for a two day period and over the years am down to every 8 weeks. I feel fortunate that it seems to be working since my current symptoms are now only numbness and extreme fatigue. Other than that, I BELIEVE the drugs are helping me- as I have no problems walking any more. (I feel for all of you who are radically effected more than me. My prayers are with you!)

      However, I have a couple questions:

      1. Any of you with CIDP totally off of IVIG that used to take it? Or have you tried to stop taking IVIG?

      2. What are your results- both positive and negative?

      3) Are there any longterm physical effects any of you have encountered with CellCept?

      I would really like to get off of IVIG, as it tends to make me sick even though I take the necessary pills. Plus, I truly HATE getting it. However, I don’t want to stop if I will revert back to not being able to walk well.

      Thanks for any input you have!
      Dennis

    • Dawn Kevies mom
      February 11, 2008 at 6:23 pm

      Hi Dennis,
      Try to pm Pam H, she has taken many drugs and is now off of everything. Regarding the cell cept, Our doc wanted Kevin to take cell cept, I googled it and took a pass. However, if ivig were to stop working, or we could not get it, I would have to reconsider. It is a personal choice based on neeed, limitations, and of course $. Good luck.

    • Anonymous
      February 12, 2008 at 11:14 am

      I just happened to see this post & yes, I have been off of IVIG since Dec of 2002. But that is because it was not working for me & I needed something stronger. I did 9 months of massive cytoxan infusions in 2003 & have not had any treatments since then. But I am left with residuals: I need to wear AFOs all of the time to walk & my balance is poor. I also suffer from the fatigue that so many of us deal with on a daily basis. I hope you can manage well without the IVIG, but I would rather be one who the IVIG actually worked for. Good luck…
      Pam

    • Anonymous
      February 12, 2008 at 8:38 pm

      Dennis,

      I’m in exactly the same situation as you, without the cellcept. I’ve been trying to wean off of IVIG and force a remission. Before I was disganosed and started taking IVIG, my CIDP would go into remission on its own after about 12 months. Now I’ve been on IVIG continuously for 4.5 years.

      I was doing one day every six weeks and have now moved it to once every 8weeks, successfully. I’m trying for 10 weeks right now but I have become so weak at week 8.5 that I think I’m going to have to do a dose at 9 weeks. My neuro wants me to push for 12 weeks, which may be possible if I give myself more rest and relax my schedule — right now I work full-time and travel internationally frequently and that does not seem to help at all.

      Can you tell me more about how Cellcept is helping reduce your IVIG frequency? I ruled out Cellcept a while ago because it seems quite dangerous to live in China with a severely compromised immune system :p I am very curious about how it’s working for you, though. Do you think it’s helping reduce IVIG needs?

      Thanks for posting!
      Kat

    • Anonymous
      February 13, 2008 at 4:37 pm

      First, thanks to those who responded. I always find it interesting the differences in all of us with symptoms and treatments.

      Kat,

      Honestly, I don’t see any side effects on CellCept. I check my blood frequently to be sure my counts are in the normal range, which typically they are at the lower range of normal.

      I did get sick for the first time in the two years I’ve been effected with CIDP. I got influenza badly. The only surprise to me is that I haven’t gotten sick more often since I teach elementary kids. I am now being more careful to wash hands like I did when I first got on CellCept. I got lax in sanitizing my hands. Lesson learned!

      CellCept was advised as my doctors did not want me to be on Prednisone for long periods of time. I know they have side effects as well, but is a good option for many here. Because I am not weak and my balance is pretty good now, I think the CellCept is working. I am just reluctant to get off my IVIG totally.

      I guess my question for you and others is, “How do you know you are in remission?” Is this known because of lack of progression?

      Dennis

    • Anonymous
      February 13, 2008 at 7:25 pm

      Dennis,

      When I used to go into spontaneous remission, I would have close to no symptoms at all. Weakness would fade away and disappear, no tingling, numbness, etc. In short, I would return to “normal” with maybe a little twitch here and there, and that was through no medical assistance. It was really like the disease would go away — part of what made it so difficult to get diagnosed. When I’d finally get to a new doctor, the symptoms would start to subside.

      I have not had any spontaneous remissions since I started IVIG. I’ve read some thing about IVIG-dependent CIDP, but have not found any good advice about how to break that dependancy.

      Also, about your flu, I just got my first cold in four years and it was AWFUL. Three weeks later I’m still struggling with it. I do worry about taking Cellcept while in China (a quarter of the population here are hepatitis carriers), but I may check into it.

      What is your plan with IVIG now? Are you trying to stretch it out further?

      kat

    • Anonymous
      February 14, 2008 at 6:59 am

      I am at every 8 weeks for two days in a row. The only symptom that gets a little worse by the end of the 8 weeks is more numbness in my face. My feet numbness seems to remain constant, which makes me wonder if that is just permanent nerve damage.

      I am considering after a few more times at 8 weeks in a row talking to the doctor about 10 weeks or stopping IVIG completely.

      Dennis

    • Anonymous
      February 17, 2008 at 10:22 am

      I am in the same place. I have no symptoms other than minor tingling in the feet. I am down to every 9 weeks having one day of IVIG. I want to stop and see what happens but when I tried to stop before I panicked because I thought I was having symptoms. In retrospect, I am not sure if I was or wasn’t. I’m just wodering what other people’s experiences are.