March 22, 2012 at 3:33 am
My Dr has agreed to rx rituxin for me. we just discussed it this past Monday–so i am still in the “thinking” phase right now. There is nothing i want more than to put this disease into remission and get on with my life!!! But……with the rituxin discussion came the subject of PML. I had never heard of it prior to Monday. Apparently it is a fatal brain infection that can be activated by the rituxin. from what i have researched it affects 1 in 1000. 3 years ago i would have not considered this very high odds…now i have cidp —which had odds of 1 in 100,000—really makes one question odds and statisitcs???
Anyone know much about this? If so what are your thoughts on it?? Im thinking if i knew for sure the rituxin was going to arrest my cidp I should go for it. It’s a tough decision for something that may or may not work. thoughts??? opinioins???
March 22, 2012 at 12:17 pm
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
March 22, 2012 at 5:44 pm
thx shellbones–yes any info on it helps. I am not on any other immunosuppressants—previously tried a 3 month trial of prednisone (almost 2 years ago) and it made me worse. That is one reason why i am a little positive about the rituxin. when i was reading through some of the older rituxin posts there were others who got worse wit prednisone and significantly better with rituxin—-something to do with the whole b cell, t cell thing. the whole conversation ended up getting a little over my head at the time.
I wish i had written down info from the old forum, i had e-mails and phone numbers of members who said to contact them if i ever got to the point of being on it. sure would like to talk to some of them now. haven’t seen any of them on here since the forum restarted. I hope they are not on here because they are doing well and are out having fun—-not because the rituxin has killed them!!! I will be sure to post how i made out on it so future users will know. does the immuran carry the PML warning? did you have any tests prior to see if you were in fact at risk? online i read about some test that tells whether or not you are one of the 50% of the population that carries the dormant cells (or whatever??) that would even put one in the risk group.
March 22, 2012 at 6:13 pm
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-
March 24, 2012 at 12:05 am
yes i agree shellbones this is a great place to learn 🙂 I have my next ivig april 5th and my Dr mentioned me having my next scheduled infusion. So after that I guess– will be the rituxin. Im not sure if she plans to continue the ivig every 6 weeks if i start rituxin or not, i asked but she wasnt sure yet.
So are you considered “in remission” or will the imuran be forever? There seems to be a lot of controversy on this. My dr said she was thinking i would need 3 rounds of rituxin (this was once a week for 4 weeks every 9 months) so im guessing if after treatments that if dont need anything i would be considered in remission??? This whole thing is confusing to me—-cuz then some say there is no remission with cidp–only treatments??
I was reading older posts on rituxin, where a member went to northwestern for sct and found out he didnt need it because the rituxin had put him in remission 🙂
AnonymousMarch 24, 2012 at 12:48 am
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.
March 24, 2012 at 3:36 pm
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.
March 24, 2012 at 3:42 pm
sanjay– good point 🙂 that was probably the statistics in use for cancer.. people on higher doses, on other immunosuppressants, or with compromised immune systems are more at risk. i have tried all of the treatments you listed except for the imuran. The Imuran carries a smaller risk of PML than the rituxin from what I’ve read—but the PML risk increases with the more immunosuppressants or more compromised immune system a person has had.
So I have been spending a lot of time reading through old posts trying to figure out which of the two people have seemed to have the most success with. Not as easy as it was on the old froum when we had the luxury of the search feature.
March 24, 2012 at 10:30 pm
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.
March 25, 2012 at 1:46 am
Hi Dawn good to hear from you 🙂 the rituxin will be my first immunosuppressant tried, other than the short prednisone trial.
I have tried the PE and am still doing IVIG. Of the immunosuppressants available my Dr feels the rituxin would be best. I didnt specify, i just told her i thought it was time we tried an immunosuppressant and she came up with the rituxin. I think they are all pretty hit or miss and if i have to start with one it may as well be the rituxin.
AnonymousMarch 27, 2012 at 6:56 am
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.
March 31, 2012 at 1:19 am
sanjay—did you stop the ivig now that you are on the Imuran? the downside of the rituxin verses some of the other immunosuppressants to me is that it does not come in pill form. the rituxin too can take up to 12 weeks to see any improvement.
My Dr hasn’t gotten back to me with dates and rx yet for the rituxin, she is waiting for imput from another Dr (Dyck) at mayo who i saw in june. For all i know after talking to him, she could decide on a different immunosuppressant. I really don’t care which one, I just feel it’s time to start one, because the ivig is only keepimg me from getting worse–but not improving. im hoping by adding the immunosuppressant it may help.
keep posting here with your imuran experience—i would be interested to see how it’s working. Good luck with it–I hope it works for you 🙂 3x a week is a lot for ivig, how long have you been having it that often? I am doing the loading dose every 6 weeks right now. Not too bad, but yes–being off it would be great!!
March 31, 2012 at 1:33 am
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.
AnonymousMarch 31, 2012 at 3:03 am
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.
March 31, 2012 at 5:40 pm
good to know Laurel–guess on any immunosuppressant we would want to be right on top of any changes as they may progress quickly like that.
Lori–did you have your rituxin once a week for 4 weeks every 6 months? by a round -did you mean a series of 4 in a row? What did you experience for side effects from rituxin?
I think one of the big advantages of rituxin is that it takes out only the b cells leaving the t. so while on it I will need to be careful of cuts or fungal infections, but will not have to worry about catching everything in the air–because it doesnt work on that part of the immune system.
When I asked my Dr how it would work on cidp if it only takes out b cells, what if it was the t cells causing the cidp? she said think of it like clapping your hands—if you cut off one hand, you couldn’t clap. So im guessing that whichever you take out b or t– it confuses the immune system. hopefully enough so it cannot keep producing antibodies that attack the nerves.
I have read that b cells reproduce very quicklly, so it makes sense to get a little more improvement after each one. maybe in the “average” immune system they are all replaced in three treamtments of 1x a week for 4 weeks every 6 months 3 times. Since that seems to be the starting protocol. But..as we all know with cidp–nothing is average.
AnonymousApril 5, 2012 at 8:55 am
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.
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