CIDP – Standard Treatments Not Working – Anyone else?

This topic contains 15 replies, has 14 voices, and was last updated by  Jim-LA 1 month, 1 week ago.

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  • #8063

    Anonymous

    I have had CIDP for three years and have been treated with IVIg, prednisone, plasma exchange, and CellCept without success. I have been taking Cytoxan for about two months and the verdict is still out. Anyone with a similar experience? If so, what worked for you, if anything?

    Redchipster

    #83834

    Anonymous

    Unfortunately, there are 5% of people with CIDP that the normal protocol of treatments do not work.
    I, too, fall in that 5%. I am also getting Cytoxan monthly at 2000mg.
    The Cytoxan slowed down the progression, as it did not stop it. In the summer of 2006, two of the doctors on my team of seven, said I had about two years left to live. That was the summer I started on Cytoxan. At that point, it had been rapidly progressing. A month or so ago, my Neuro. thinks the Cytoxan has added about two more years.
    I also went through 9 months to over a year of each of the normal protocol of treatments-high dose steroids, IVIG, plasmaphereses, immuno-suppresents.
    There is nothing left to try. The only thing that might hold out hope is the stem cell experiments, though, my Neuro is not pleased so far with the outcomes of experiments. He is head of Neurology at my local hospital, and told me he is watching the outcomes. He said if he was pleased with the outcome, he would entertain starting it at his hospital–but to date, he doesn’t see the benefit so far.
    The CIDP hit my autonomic system, knocking off the nerves that control the various organs and systems. Because it hit the phrenic nerve, which controls the diaphragm, I have very shallow breathing now and am on oxygen 24/7.
    The doctors have told me, that that is what will probably do me in–I will get a bad flu or pneumonia, and not be able to fight it off.
    I choke now on food–a feeding tube is not too far off in my future.
    I also know a trach and respirator is not too far off in my future as well.

    Get you affairs in order, as I was told by my doctors. Have your Advance Directive in place. A sister disease of CIDP is ALS, as well as MS.
    Go over to the ALS chat room–you can talk with one of the moderators over there, his name is Joel. He is living an okay life with a trach and respirator. Of course it is a much better life without one, but I am saying that you don’t have to give up–you can live an okay life for a while longer, with a trach/respirator and feeding tube. The people over at the ALS chat room can answer your questions for you. Since there are so few of us here that can tell you what to expect, you can talk to people over there, since advanced CIDP is similar to what they go through.

    Has it hit your autonomic system yet? You end up taking a handful of pills three times daily–as it hits each organ or system…
    Email me if you want any more info.
    KEDASO
    (Ken)

    #83846

    Anonymous

    Hi Redchipster and Ken! I was diagnosed with CIDP last year but have been dealing with nerve damage about 14 years now. Right now I am waiting to see a doctor today and hoping they start it right away. I wonder if Rituxan would be a possible idea.
    I could not handle that and refused the treatment with it but a few in here have has some good results.
    I know my CIDP is progressing. Something going on with me now and that is why I am seeing the doctor. My nerve damage stuff going on with me is painful! Terribly painful! Last night I had my feet propped up two feet in the air and was wearing my arm splints. It’s two in the morning now and look who’s up!
    I wish both of you my best and pray that something finally comes out to help you both. Hugs
    Linda H

    #83860

    GAVol
    Participant

    Hi Redchipster,
    I have been fighting cidp for nearly 14 years now with the past 2-3 showing a slow but steady decline across the board. I’ve been on imuran, cellcept, cyclorsporan retuxan, oral prednisone, PE, etc. The progression was slowed significantly with PE and IV solumedrol every 2-3 weeks for several years, but when my progression began to speed up, I tried pretty much everything else out there including four MS drugs, two of which are still in clinical studies. With no results from the MS drugs and PE and IV solumedrol no longer slowing things down, I asked my doctor if I could try Gamunex, brand specific IVIG, since it was approved by the FDA for CIDP in September 08. I know that for a drug to get FDA approval for a speciffic illness, there has to be something different from similar medications in order to obtain such approval.

    My doctor reminder me that we had already tried IVIG several times over the years with no success. He told me all IVIG products were the same, however when I researched Gamunex, I found that it is processed using amino acid rather than sucrose used with all of the other IVIG products. When I showed him the clinical results for Gamunex, and how they were better than “regular” IVIG, he agreed to put me on it for 6 months to see if it worked.

    And WOW, what a treasure find this has been for me. After just three months, my improvement has been so good that he plans to take me off PE and IV solumedrol and just use Gamunex if I am the same or better when I go back in August. I currently get PE and 500mg IV solumedrol one day, then 100 grams of Gamunex the following day, every three weeks. Neither the doctor nor I know why it is working, but it is, which is the only thing that matters. My walk gaint is nearly normal, I can again drive for hours at a time, can do yard work and hobbies, things that just 4 months ago were not possible. Sorry to ramble, but my message is to not give up and keep searching for different treatments or treatment combinations until you find the one that works for you. It took me nearly 14 years to hit on Gamunex, but I now see improvement every day vs the daily decline for so long. Good luck.
    Fred

    #83866

    Anonymous

    Ken,

    Thanks for your honest answer. I am sorry to hear that your CIDP has progressed that far. Mine has not progressed to that point yet but I think we are in the same boat. It has not hit my autonomic system yet. I am taking cytoxan in the pill form (200 mg per day) because my neurologist says that the pill form is more effective for CIDP. Is a bone marrow transplant an option for you? Good luck.

    Redchipster

    #83874

    Anonymous

    Redchipster,

    I am sorry to hear of your situation. I hope things turn better for you.

    If I remember the treatment options, most of the chemotherapies target the T cell side of the immune system.. Rituxan works the B cell side. Some people have had good success if one approach does not work.

    For me, many therapies did not work. My CIDP is not in the same place as Ken’s, but I deal with a lot of pain and dysfunction. IVIG was not particularly effective and other treatments did not alter the course of the disease. But I have not progressed to the point that more intensive treatments would be an option. The more severe the treatment, the greater the physical risk to the patient. You really need to be aware of the risk/reward.

    Don’t expect CIDP to affect your autonomic system. Generally it does not. It almost always stays in the peripheral nerves. That is not to say it cannot, Ken’s case is very real.

    As far as bone marrow transplant, the problem is the T cells, and B cells of the immune system. The stem cell treatment involves harvesting your own stem cells and growing them. Meanwhile you get your immune system chemo’d out of existence (no more bad guys), and then re-introduce the stem cells, which would remake the immune system. Generally that is how it works. It is really a dangerous treatment with potentially deadly obstacles. Hopefully they can find another treatment regimen that would have greater odds for a safer outcome.

    Take care
    Dick S

    #88690

    Anonymous

    I went through the same thing, I finally got some results from cyclosporine. My previous treatments were IvIg, prednisone, and plasmapheresis. I am not 100% but much better than I was

    #88731

    Anonymous

    Hi, Red.

    Finding a viable treatment can be a matter of trial and error. I’m currently on IVIg every four weeks and 125mg of azathioprine (Imuran) daily. It’s keeping me stable.

    The key is to keep experimenting until you find something that works. Regrettably, that may take some time, since some of the immunosuppressants take time to build up in the system before they show benefit. Makes you feel a bit of a lab rat. However, it’s the rare CIDPer for whom nothing is found to help.

    Running on my exercise wheel,

    Deb
    London

    #88734

    Anonymous

    Too often, neuros don’t prescribe enough IVIG to knock things back into shape! And I also agree that Gammunex has worked better for me than other brands, because of it’s soluables in it. Do keep in mind that this site elsewhere offers insights as to what each IG product contains and they are ‘different’ in secret proprietary ways. They are all similar, as they are ‘processed blood products’? But after that, how they are treated is often quite different.
    Solumedrol wasn’t an option for me due to other medical issues and getting the right dosage and frequency of IVIG and the right brand makes a BIG world of difference.
    That the company which makes Gammunex [Talecris] went out on a limb to MAKE IVIG a legitimate treatment for CIDP and GBS is an incredible feat. Prior to that, most clinical trials for IVIG had been for other medical problems such as MS or Parkinsons…with mixed results. Since the product had been used off label for well over 20 years and has been ‘accepted practice’ by most insurance companies, the costs and then cost containments have since become BIG issues! Making this legit was super for all of us! And Good work Redchipster in digging that up to present to your doc. Many docs in practice are behind the times as to what’s new in treatments. To keep up on things could keep them from ‘practicing’! You were one excellent self-advocate and likely in the long term will help others with that work!
    Next aspect you mite have to deal with is to KEEP A LOG! About how much better you feel…cite specifics: such as walking longer or standing more stable or even less pain! Why? Because the doc has to JUSTIFY that it’s a working therapy for you! I know I felt ALL three after my second start-up infusion! I got some of my life back!!!!
    Congratulations for being the best advocate that you needed to be!

    #93607

    Anonymous

    [QUOTE=jpslildove]I went through the same thing, I finally got some results from cyclosporine. My previous treatments were IvIg, prednisone, and plasmapheresis. I am not 100% but much better than I was[/QUOTE]

    I’m encouraged to hear you have some good results from cyclosporine as I have had all the treatments you have had plus cytoxin with no benefit.

    Please let me have some details on your treatment. Dosage, etc.

    Thanks in advance,

    Ubbietom

    #93609

    Anonymous

    Dear All:

    I am curious to know how many of you have the remitting/relapsing and how many the slow progressive variant of CIDP. It seems that the slow progressive form is much more difficult to treat. I know that some start out with remitting/relapsing and then move into the slow and steady decline phase. I myself never experienced a remission and none of the standard treatments have been successful in reversing symptoms….though I have not noticed any new symptoms in 8 months or so. The trade-off, though, is having to deal with the short and long term side effects of steroids and immunosuppressants.

    I am undergoing stem cell transplant next month at Northwestern Memorial. It is radical and potentially dangerous, but based on the experience of others on this forum, it is the best hope of eradicating the disease as opposed to simply treating it.

    Sharon

    #93679

    Anonymous

    My son tried everything to and it didn’t work. he then moved to cytoxan but in IV form. we were told that the pill wasn’t as effective as the IV version. The IV version of cytoxan worked for him.

    Ryan had a very aggressive form of CIDP. he got it and it was fast moving. within 4 months of being dx he was paralyzed and in a wheelchair. he was in the wheelchair for almost a year. he is out of it now and doing great.

    I am sure the pill form works well as we never tried it but if you don’t see any improvements I would at least ask to try the IV form of it before you rule it out completely.

    Good luck

    Rhonda (Ryan’s mom)

    #93881

    Anonymous

    Hi,
    I had all the standard treatments plus six months of cytoxin which we have decided did not help at all.

    I begin cyclosporine this week.

    Ubbietom

    #113653

    bcproblems
    Participant

    Hi people Happy Holidays! So I just came from my 5th nerve treatment..The ivig.. plasmaraphesis.. Its not working,Extremely frusturating.My doc tells me to double up on the nortripticline at night.That hasnt helped taking just one dose,just lets me sleep.I am going to one of the best hospitals in nyc.Hospital for spec surgery.This does not seem to be going away and I feel deep down hes steering me wrong.I walk with a cane and the treatment hasnt worked at all.He wants to do another session then will weigh options after that whatever that means..Frusturated in nyc..I feel like im going to have this cidp for a long time..

    #116146

    Kathleen Norton
    Participant

    This is quite a thread! I’ve had both CIDP & Vasculitis.

    Most of the drugs mentioned above have been used, including Rituximab.I now have a relapse of what appears to be severe, rapid onset of CIDP. I had my last Rituximab treatment in January – although I’ve been readvised that this is supposed to be repeated every 4 months. Last known CIDP was in 1998 treated with IVIG (although it could have easily been missed in a confusion of care received in both Los Angeles and Tennessee. Before Rituxan I was treated with Cytoxan, Cellcept, Prednisone, etc.

    Good luck to all of you dealing with this condition. It is highly variable and affects so many of us differently with varying confusing presentations.

    I would write much more but my hands aren’t working properly and typing is exceedingly difficult.

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