AnonymousAugust 8, 2006 at 10:29 pm
I have been on IVIG for 3 years have stayed pretty much the same…but now I am noticing a slip in how I feel. I am on 100gm of IVIG a month…don’t want to go higher. My options leave me limited…don’t want to do Steriods…worried about side effects with Cellcept so that leaves me with Rituxan
Just a couple of questions:
1. I thought rituxan was a one time deal (like you take it for a month and then that was it)…but it looks like it is more a maintenance issue…so my question is how often do you take and do you take it for your life or only for a year or so?
2. Any side effects?
3. How much do you take and how long does it take to get it (is it a 3 hour drip etc)?
If anyone could help me with this I would be grateful!
AnonymousAugust 8, 2006 at 11:07 pm
Hi Julia, you may want to check out the other two Rituxan threads under the CIP/CIDP category. Since it is not approved by the FDA except for nonHodgkin’s lymphoma and now one variant of rheumatoid arthritis, there are not very many of us who managed to get it. My insurance, Aetna, considers it experimental for CIDP and won’t approve and pay for it.
From what I understand it has to be repeated after 6 months or so. Side effects vary but may be serious in isolated cases. Eric Vance has an excellent webpage on Rituxan. (link deleted by administration)
During my visit today, I asked my neuro about trials for CIDP patients, a preliminary step for approval. She told me that there are none at the time but it will happen eventually. Last week while getting IVIG I talked with several people at the infusion center participating in Rituxan trials for MS patients. They are supposed to get another infusion in about six months. One of them had an allergic reaction the first time but nothing serious.
AnonymousAugust 9, 2006 at 5:00 am
Julia, I have progressive CIDP for 6 years now. I had had the usual treatments plus, cyclosporin, mycophenolate, steroids at 100mg daily all to no avail. I could not stand, toilet, wash ,nor feed myself, I transferred with a sliding board. My daughter’s wedding was six months away, she wanted me to walk her down the aisle.
I was offered Rituxan and accepted, I was already in renal failure on dialysis. The major side effect is anaphylactic shock with risk of death resulting, I did not mind that. It is recommended that the crash trolley is standing by. I had oral paracetamol and I/V hydrocortisone and I/V antihistamine to reduce side effect risk. I had a series of seven weekly infusions at £1,500 per infusion. Thank god for the NHS. I could then stand, and attend to my self care. With a stick in one hand my daughter on the other, both of us in tears, I walked my daughter down the, albeit short, aisle.
A year later I had another course of four infusions with no further benefit. DocDavid
AnonymousAugust 9, 2006 at 8:50 am
Thanks for the replies…I have read all the other Rituxan posts but could not put together a firm understanding of it. I live a fairly normal life now…but realistically how long can I continue on IVIG. I am 36 now have been on IVIG 3 years at around $20,000 a month. My husband has a great job and wonderful insurance but with the world today…benefits keep sliding every year. Larger copay, more each month etc. So I am trying to come up with an alternative. My neuro did an emg yesterday and it showed no improvement (and I suspect a bit of a loss in the arms). Good point is it kinda made my neuro take me seriously. Up to that point everytime I went in he would look at me and say you look great and basically saying you don’t need IVIG…but after my emg he said he will not lower my IVIG.
We also talked about Rituxan and he said if he was in my position he would want the drug. But that it is hard to get. I guess it is a fight I have to be prepared for!
I guess I feel that if there is something that can help arrest CIDP like rituxan is doing for many people I should try it. I feel like IVIG is a beaver dam…a broken one at best…things still get through and how long can it continue to hold!
March 24, 2012 at 12:33 am
julia—are you here on the new forum ?? if so I would be interested in whether you took the rituxin route and how it turned out for you?
AnonymousMarch 24, 2012 at 2:55 pm
I too, am struggling with IVIG iv – too many side effects and now quickly backsliding in so many ways.
Re: a new option for CIDP patients: my doctor at Weill Cornell Medical Center just got a trial approved for sub q ivig – all the benefits with none of the side effects from the infusion. The good news is that this will be opened to all those patients who meet the “typical cidp criteria.” I am so glad that I kept encouraging my dr to look into this — that’s the good news. The bad news: I personally don’t qualify as I have “other inflammatory and toxic neuropathy.”
FOR ALL PATIENTS WHO PRESENT AS A TYPICAL CIDP PATIENT YOU MIGHT WANT TO LOOK INTO THIS! From all the reading I have done, it’s all the benefits with little of the pain of the iv drip.
AnonymousMarch 24, 2012 at 8:07 pm
Who is your doctor at Weill Cornell? I have been treating there with Dr. Latov since February of 2010. We talked in the past about SubQ due to my vein issues, but he told me at that time that it was not approved for CIDP. At present we have suspended my IVIG to see if I am in remission, but if I ever have to go back to IG I would like to try it SubQ.
AnonymousMarch 24, 2012 at 8:50 pm
I have Dr. Russell Chin – I just saw him a couple of weeks ago. I really like him/the group; they took one look at me and knew what was up. What a relief to find someone who knew what they were doing; who had seen cases like mine before AND who was so respectful and kind.
Dr. Chin and a new fellow (who came in to observe me) told me about the study. Orignally, I had done a lot of research on it and all the reports were quite positive. I had set Dr. Chin up with a contact at Hizera who handles insurance and Dr inquires. A group met with her (at a conference or?? not sure) and they were so impressed with the ease of use, and lack of side effects. They told me about the study.If you have typical CIDP you may have a chance.
1. I asked them if they had other SPS patients and they said yes – is it you?
2. If you are not doing ivig what ARE you doing/taking? I am really, really struggling and can’t handle the headaches from the infusions = but falling apart from CIDP and SPS.
thanks for any/all info
AnonymousMarch 24, 2012 at 8:56 pm
Goodney: are you still pain free and fully mobile? Are you still working full time? Any autonomic involvement? Any new/additional autoimmune diagnoses?
I was diagnosed when I was a complete trainwreck – saw a million doctors but all diagnosed me within their field of expertise (sound familiar??). Took about 3 years but got the CIDP and dysautonomia diagnosis; approximately 6 months thereafter SPS
AnonymousMarch 27, 2012 at 6:52 am
My understanding is that SubQ IVIG for CIDP is something that has been tried for a couple of years. So even if you don’t get accepted to/can’t go to the trial, you may be able to convince your doctor to switch to it.
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