rituxin (again)

Hi Lori- If it helps,almost all the cases of PML in patients using Rituximab for autoimmune disease were in patients who had prior or concominant immunosupressive therapy- I don’t know if you are on any steroids or other immune suppressing drugs but when you are looking at rate of 1 in 1000 you may be looking at all people treated including those with cancer on multiple chemo agents. I think that if they think it will help and if you are otherwise healthy you may not be in the high risk group for that complication. No one can give you guarantees unfortunately- I myself am on Imuran which comes with its own stuff and I was on cellcept ( briefly) which also carries the PML warning . good luck with your decision

Hi Lori- Hmm you raise a lot of good questions- I have so far only seen case reports of PML with azothioprine ( Imuran) and usually when used with other immunosupressives – I don’t believe it carries a specific warning by the FDA but theoretically can cause – I also looked up info about the blood test- it was developed for patients with MS who go on an agent called Tysabri which is associated with PML- it is a blood test to look for antibodies to see if you have been exposed to the PML virus ( called the polyoma virus) that can become active when you are immune suppressed- they use it in patients who are considered at high risk of this before starting Tysabri – it was just approved by the FDA and not sure if available yet . the plot thickens yet again! I have a friend who is on Rituximab finishing a protocol of every 3 month infusions and also received cytoxan for a hematologic disease and has done very well works full time no issues except occasional sinus infection. I learn so much from everyone on this forum-

One thing to keep in mind in CIDP treatments is the dosage amounts. Most of these drugs, including Rituxan, don’t undergo clinical trials for CIDP. So when you hear the 1 in 1000 number, you have to wonder what dosage amounts they were getting, and how it compares to what you will be getting.

For example, I found info on the FDA website that says out of roughly 100,000 Rheumatoid Arthritis patients exposed to Ritxuan, only 3 ended up getting PML: http://www.fda.gov/downloads/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/UCM187792.pdf

Since RA is also auto-immune, it’s likely that your dosage amounts would be similar to the recommended amounts for RA.

On the scale of CIDP treatments, I would say Rituxan does seem a bit more dangerous compared to others. For me personally, I would make sure I tried Prednisone, IVIG, Plasma Exchange, and Imuran before I gave Rituxan a shot.

Hi Lori- in answer to your question I don’t know what the endpoint is for me as far as Imuran is concerned. Remission to my understanding is when disease is no longer active but not on any treatment- If you are on treatments like IVIG or immune suppressants, then you may have controlled but active disease if still requiring treatments. One can either go into remission on their own or with the help of remission inducing agents like Rituxan. I have been told and read that ivig is not considered a remission inducing agent due to the mechanism of action in blocking the effects of the so called ” bad antibodies” produced against peripheral nerve myelin, but does not limit the production of these so called ” bad antibodies”. Immune suppressants actually work on decreasing the production of these antibodies. I do not believe I am in remission as I still have symptoms and require regular treatment. I believe the plan for me is to slowly wean down on ivig and if I ever get to a point where I am off completely , a decision would be made about what to do with Imuran at that point. It is hard to balance trying to live one day at a time and considering the future and all of the implications there.

HiLori. since you have already tried many drugs, have you considered doing the cytoxan protocol that pam h and ryan did? Andrew, from Canada I think had good results with the rituxin. I realize the high dose is a concern, but if you are trying sseveral with no results, maybe one good dose although double would once and for all knock it out.

Lori- I had basically no response to several months of heavy IVIG doses, so my Dr. switched me to Imuran. I literally just started taking it today, so I’ll see how it goes. One downside of Imuran seems to be that it can take up to 3 months before you start noticing any difference…so you have to take it for a bit before you find out if it will work for you.

Also, you have to get weekly blood tests done for the first few weeks, and then bi-weekly for a few months after that to make sure your blood counts stay safe. But I guess that’s better than getting IVIG infusions 3x a week.

Dear All,

I have had 3 rounds of Rituxan over the past six years. I regularly receive IVIG every other week, for 3 years now. When my condition worsens I will then have a round of 4 treatments with Rituxan. It has been on average every 18-24 months. This treatment seems to work for me. Also after the second treatment (two weeks) I saw major improvement. I was back to the best I can be.

Sanjay watch for any back pain and muscle aches with the Imuran. Hubby lasted about 2 1/2 weeks on it before he developed sepsis and was hospitalized with high fever, pancreatitis, and pneumonia. By the time I got him to the hospital he was agitated and getting delirious. Within a week of going on Imuran he started to talk about muscle aches (I think in his legs) and then about back pain. It really sneaked up on us how quickly he got deathly ill. We were totally blind sided with his side effects as the neurologist didn’t warni us that could happen. He went from being a healthy guy to be close to death. The sepsis caused a huge relapse of the CIDP too. Many people do fine on the Imuran but there are people like hubby that get blind sided with a bad reaction. My theory is that many people have small infections in their bodies that never get full blown. Hubby had past minor diverticulitis or irritable bowel issues and he uses a CPAP for sleep apnea. CPAP users are at higher risk for picking up chest infections with bacteria growing in the tubing and a lot of CIDP’ers seem to have irritable bowel issues so there can be a little pocket of infection can hang around in the gut. Imuran gets those infections going rampantly if they pre-exist. Younger people seem to have less of these side effect issues. Hubby is 64.

Lori – I was on IVIG for almost a year, first doing 60g/week, then having a 2mo break due to an insurance change, then later doing 90g/week 2 weeks on, 1 week off. I don’t really know if I slowed progression, but I definitely didn’t have a noticeable improvement when on it. But in my case, progression has been extremely slow, so it’s hard to gauge if the IVIG did anything at all. But my Dr. said since I had been getting high doses for so long and didn’t notice anything from it there wasn’t any point to continue with it.

So far I haven’t really noticed many side effects from the Imuran. I get a little bit of nausea when I take it (with food), but it’s not too bad. My first blood tests were okay, but my absolute neutrophil count was on the low end. I’ll have more lab results tomorrow, and we’ll see where they’re at. If it gets too low my Dr. said I’d have to stop.

laurel – I haven’t had any muscle pain yet thankfully, but hospitalization is always a potential on immunosuppressants. I actually had febrile neutropenia on IVIG and had to be in reverse isolation in the hospital for a day. A couple things my Dr. tried to do is ramp me up on it a bit slowly so we can carefully monitor levels and make sure to stop before I get sick from being immunocompromised. My Dr. spent a lot of time explaining all the major things to watch out for, and listed out every instance that I should immediately stop taking it. I’m also relatively young compared to a lot of CIDP patients (just turned 30), so I’m in mostly good health overall.