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Hi everyone! Just had a medication for you guys. I've had lupus for the last 5 years. During that time we've done the prednisone and plaquenil (both i'm still on) we've also tried cellcept, cytoxin, and imuran. I'm currently having problems with imuran side effects and want to stop taking it. My question is for those of you who've had to stop taking imuran what was the next step? Did you go back to cytoxin or rituxan or was there something else they tried? I'm at my wits end and was just wondering what has worked for other people. Thanks so much!
Alicia
 

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Hi there,
I'm in a similar situation to you - I can't take any of the immunosupressants in any kind of useful dose due to bone marrow suppression. I'm relying on plaquanil, prednisolone, and rituxan at the moment. My lupus isn't as well controlled as I would like, but I'm coping - when I get desperate I take more painkillers and steroids. And I try not to think about it :hehe:

Sorry I can't be of more help - have you tried rituxan?
 

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We haven't tried rituxin yet. I'm alittle scared of it due to the risk of brain infection. I feel so terrible I just want to feel alittle better. I guess I should call the dr. I just hate feeling like I'm complaining, but I haven't felt this bad in awhile.
 

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If you're given the option, I'd give rituxan a try. The chances of getting PML are incredibly slim, the side-effects for most people are minimal, and some people do get miraculous results. You obviously should chat to your doctor about it - but given the pretty much inevitable side effects of lots of steroids over a long period of time I know which one I would choose.
 

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Hi Alicia

I was in your position in 2005. I was taking hydroxychloroquine, Imuran, 60mg prednisone and SLE symptoms were accelerating. I have never been so sick. Previously, Cellcept was not effective either.

The choice then was cytoxan or rituxan. We decided to go directly to rituxan since adding the toxicity of cytoxan to the mix might have been too much. My doctor did not hold out much hope for success with cytoxan anyway.

The combination of HCQ, Imuran, prednisone and Rituxan was an amazing combination. All symptoms disappeared very quickly and I had a year remission while tapering off all the drugs. It was wonderful.

Since then, I have had Rituxan with no other drugs in combination twice. What is clear is that Rituxan is successful with B-cell immune problems, but not with other immune issues. Unlike the other drugs you mentioned, Rituxan does not suppress the immune system broadly. That's good because some immunity is preserved to fight infections we are exposed to. The down side is that allergies can flare as well as t-cell mediated inflammatory problems like psoriasis.

All things considered, I love Rituxan.

Risk of PML (virus you mentioned) is extremely low. It is a virus that many people carry and under very very rare circumstances can be reactivated. You can be tested to see if you are a latent carrier. If the test comes up negative, then there is no risk at all. If it comes up positive, the risk is still extremely low....kind of like catching malaria in Alaska.

As far as allergic reactions to the Rituxan infusion....most infusions are now given along with a very large dose of steroid to prevent that happening.

A few years ago, Rituxan for SLE was given in the classic 4 infusion method used by lymphoma patients. Now, there are people who are on a 2 infusion treatment (like it is done with RA patients) while others are on monthly maintenance treatment. Lots of different options for different situations. Some have Rituxan alone and some do better with something else added in...like pred or imuran, or plaquenil at low doses.

I have my infusions done at a cancer center at a major university hospital. They have lots of experience with Rituxan infusions with their cancer patients. The emergency room is about 50 ft down the hall. I have 50mg benadryl (antihistamine) and 250mg methylprednisolone (steroid) dripped in a half hour before starting the Rituxan. That's my security blanket! :calm:

Length of time for infusions are variable. They start slowly...might take as long as 5 hours for the first infusion. After that, time usually shortens with each infusion. I think 2 hours is the shortest I have heard of.

You need to have someone available to drive you home. Benedryl makes some people too sleepy to drive and the large jolt of steroid can be disorienting. Take a good book, ipod, and make arrangements for lunch and junk food! :lol:

Whatever you decide, best of health!

Fran
 
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