IVIG vs. Immuno Suppress Drugs

    • May 5, 2011 at 3:46 pm

      Hi, I am new to CIDP. I have had my loading dose of IVIG (Gammunex) exactly one month ago today. I had my follow up appointment today with my doctor’s assistant to discuss my post IVIG month. I think I got good results from the IVIG infusion. Initially I had the bad headache for about 36 hours but after that I just had some mild fatigue for about a week. But after the fatigue went away I felt good. Almost like I felt before I had CIDP. I joked with my RN saying I was starting to question if I really had CIDP because I felt so much like my old self. Well starting a few days ago I started to notice the tingling in my feet and the numbness on the right foot again. So we decided to schedule my second IVIG treatment next week. And probably go for an infusion every 4 weeks going forward for maintenance dose. My question is this. She mentioned that some patients with CIDP go on immunosupressent (cancer) drugs in very low doses to keep their CIDP in check. Then they do not need the IVIG. She said some of the newer drugs do not suppress the immune system so low that you are always getting sick. That this would be a possibility if I did not want to keep getting IVIG every four weeks. What is worse for you, the IVIG (with the possible side effect of kidney damage) or the immunosupressent drugs (not sure what side effects these can cause). Does anyone treat their CIDP with only immunosupressent drugs? Is it working so that youd don’t need IVIG? Are cancer drugs dangerous, like can they cause other problems down the way. All this is so new to me. I search and search on the internet for information regarding CIDP treatment but everything is so confusing at times. I have a very mild case right now and would like to keep it where it is and not progress with more damage.

    • Anonymous
      May 5, 2011 at 7:04 pm

      Results first? When did and for how long did you feel BETTER than average? Make notes…when [how many days after, for example] did you feel less effect? make notes. Key here is notes as to changes good and bad thruout.
      Headache? Ask the neuro about the rates given to you for your infusion.. I’ll bet if it took less than 4-5 hours? IVIG was given to you too fast for an ‘introduction’. Soo ASK the DOC about the rates? And should you maybe be pre-medicated [meaning at first and mostly for many w/Tylenol and Benedryl].
      I chose the IVIG for several reasons, steroids were out as I was borderline osteo; chemo meds were out after a year as I’d gotten Cancer. The IVIG was a simple [tho not really so simple?] more ‘organic’ way to get treated.
      Fewer side effects [if given properly] than steroids and other therapies. Luckily I have done well on it for the greater part. And having other new issues that required surgery? IF you time it right? You’re less likely to get an infection! Better yet? I’ve not had a bad cold or worse since I’ve been on it! And I used to get at least 3 bad colds a year!
      Of course, many docs in many plans will ‘go’ for the cheaper treatments if they can. IVIG can be verry expensive, unless you have good insurance. I hope and pray that you do! TRULY!

    • Anonymous
      May 5, 2011 at 11:56 pm

      My husband who had CIDP-MADSAM was started on Imuran about 3 months after he started IVIG. Within 3 weeks of starting Imuran, he developed sepsis and was hospitalized. He nearly died. No more immunosuppressants for him.

    • Anonymous
      May 6, 2011 at 3:23 am

      I started out with IVIG as my first treatment but after four months there was no improvement so I began corticosteroids and again after four months no improvement. I have been on immuniosupresent (Celcept) now for almost three months and at a rather high dose, 3000 MG/ day and oral Prednisone (20 MG/ day) and have had very mild side effects and a very stable WBC. What has changed is that I walked up the hill from the barn TWICE last week and walked the dog’s today for the first time in months – without help.

      I sure hope this strength continues as we try reducing the steroids. As for the celcept, I wasn’t crazy about going there but my options were getting limited. I am pleased (ha, freak’n thrilled) things are getting better and hope we can reduce the med’s to a safer level, but till then I’m stepping lively.

      What has amazed me about this disease is that everyone is different in symptoms, in pain, in reaction to med’s and so on. So don’t get too panicked, if “A” doesn’t work try “B” and so-on. I am thrilled to almost be normal again,
      now just need to see if we can reduce or eliminate the treatments and stay healthy.

      Last note: If you do decide to use a cancer drug, get your blood count and whatever else they suggest checked regularly. Good luck, wishing you well.

    • Anonymous
      May 6, 2011 at 8:05 am

      One Small Step is right on the money. It is impossible to predict success for any particular individual with any particular treatment regimen when dealing with CIDP. You have to find out what works for you and go for it.

      I am one of those fortunate individuals who has responded well to IVIG. Yes, I have some side effects after an infusion. Yes, it is reallly tearing the **** out of my veins. But it has allowed me to continue to live my life, and I thank God for it.

      No one knows your body better than you. Keep track of your symptoms and response to your treatment. Go to [url]www.nufactor.com[/url] where you can download an Infusion Log and a Health Diary to keep track of how your treatments are affecting your condition. Click on Resources, and then IG Health Tools, put in some basic information about yourself, and download the forms. Subscribe to IG Living Magazine. You can find information about it online, and it’s free.

      I have never been on immunosuppressants. Some do very well on them with few side effects and complications. Some do not. It’s the same as with any treatment. Consider carefully any treatment options, get as much information as possible, and pay attention to your gut. I once had a physician who diagnosed me with rheumatoid arthritis and wanted to put me on chemo. I thought carefully about it, and it just didn’t feel right. I sought a second opinion, and was told I probably didn’t have that condition, and even if I did, it was so mild that I certainly didn’t need chemo. Let the wisdom of your mind and body work for you.

    • Anonymous
      May 6, 2011 at 2:05 pm

      I hate it when this is brought up so early in a persons treatment.

      My opinion is this:

      You tried IVIG & it worked! You got good results from it! That is all the medication you need. Cancer drugs are brought into the mix when & if IVIG does not work for you. Steroids should also only be used when IVIG does not work.

      Do a forum search for a link to a webchat with Dr. Dyck from Mayo. I agree 100% with his protocol.


    • Anonymous
      May 8, 2011 at 8:01 pm

      I have been on Cell Cept(immunesupp.) since late 1999. As far as we can tell
      I have no side effects. I took IVIG every 2 weeks for months but my veins were not very good and I went on the Cellcept with the occassional IVIG.
      I started on 2500 mg. until 2010 and I went down slowly until this March I was on 500 mg. To low and now I have upped them to 2000mg. to stop the
      progression. I had heart stents last year and now am worrying about the IVIG
      I probably need to get back to normal. They are now finding IVIG can cause
      heart attacks and stroke in stent patients. I have been happy with the immunesup. but could I get cancer in the long run, I do not know. I chose to be able to be up walking and living life with the grandchildren. This disease gives us some tough choices.

    • May 9, 2011 at 8:54 am

      Thanks for everyones input. I am staying with IVIG at this point but I was curious about cellcep. My neuro brought up the treatment because I was upset that my symptoms came back in 4 weeks since my IVIG treatment. I was hoping to get more like 6 weeks between IVIG infusions (wishful thinking I know). But I don’t want to have the risk of cancer added to the mix right now. I have enough to worry about with just having CIPD thinking about my future. I am only 46 and my daughter is only 7 so I have to be around a long time to help her grow into a young lady. I have my second IVIG set up for this coming Friday. They are going to run it in at a slower rate this time and since it is not a loading dose I only have to get one infusion instead of two consecutive days. Hopefully she is giving me enough though to help put the symptoms to bed again for a few weeks. I did feel great after the IVIG. I almost started to doubt their diagnosis because I felt almost normal again and stopped thinking about my CIDP every minute of my day for those two weeks. I cried when the symptoms came back because it snapped me back to my CIDP reality that this IS not going away and is here for life. Feeling better today about the whole thing. I just needed to cry to morn my old self and try and accept the new CIDP me. Hard thing though because I was so healthy and very active.

    • Anonymous
      May 9, 2011 at 12:09 pm

      Have whatever dialogue you must with your neurologist, with your written notes in hand, to discuss how much IVIG is enough. Oh, yeah the ‘textbook’ probably says 5 days loading dose followed by whatever- maybe 1 or two times per month.

      Well, dive into the writings, quotes and podcasts of the experts paying particular attention to this phrase “…it is important to adjust the treatment to the individual patient’s Clinical presentation.”

      Simply put, it means, to me, if you’re getting weaker or having worsening symptoms than you need more IVIG more often. My initial Rx from Mayo Clinic was for .4g/kg 2 times per week for three months!

      Don’t blame the IVIG for not working if you don’t get enough of it.