Author Topic: Your thoughts on Rituximab?  (Read 3954 times)

Sven

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Your thoughts on Rituximab?
« on: May 17, 2012, 01:45:11 AM »
I have just read a new book "Sjogrens`s syndrome, Practical guidelines to diagnosis and therapy" (Fox/Fox), 2011.

There is a chapter on B-cell Depletion where they show positive studies about Rituximab. It seems to have been most effective on people who are in an early face of the disease and where it is more aggressive. They also report relatively low side effects.

What I like about is that it seem to be the only thing that attacks the disease itself and just not deals with the symptoms.

But reading about it here most are (in general) not very happy about it. "Heavy drug that should be used when everything else has failed and with terrible side effects".

Do you think it can be correct that the benefit from Rituximab are better and the side effects less when you start the treatment early?

I am really thankful for ANYTHING you can share about your thoughts and experience from Rituximab.

Thank you!


Patty

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Re: Your thoughts on Rituximab?
« Reply #1 on: May 17, 2012, 01:14:20 PM »
I just had my second rituximab infusion today so I haven't had time to see how it will work for me yet. I had cytoxan infusions before this, and the side effects were worse, plus cytoxan significantly increases the risk of bladder cancer, even many years after having it. I am switching to rituximab because it doesn't have a cancer risk and it seemed to me a safer drug for long-term use. People worry over infusion rituximab reactions, but I go to a large and busy clinic where the give rituximab a lot and they told me they have never had a patient have trouble with it. Certainly the infusion reactions must be taken seriously, but for me it was worth the risk and I had no infusion reactions at all whereas the cyoxan infusions make me naseaus immediately and for days afterward I was throwing up. I did have a LOT of bad muscle pain for several days after the rituximab infusion. Felt like a truck ran me over, then backed up and ran me over again. The nurse told me to take one tylenol and one benadryl each night for a few days - I'll see if that helps.

harrigan

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Re: Your thoughts on Rituximab?
« Reply #2 on: May 17, 2012, 11:26:34 PM »
Hi Sven - I had my first infusions in December and will probably have the next after I see the rheumy in June.  The infusion reactions are rare and there will always be resuscitation equipment nearby so I wasn't too worried about that.

Although I have Sjogrens, my main problems are from uncontrolled RA.  I think I had a couple of month's reprieve before being back up to very high inflammation levels again.  I'd say weigh up how well you are currently managing without Ritx.  If you are at the point where carrying out your daily routine is impossible, then it may be worth it.  Otherwise, keep it in reserve for when you need something extra.  Let us know what you decide xx Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

Sven

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Re: Your thoughts on Rituximab?
« Reply #3 on: May 18, 2012, 05:06:26 AM »
Thanks! I really appreciate it!

I am new with Sjs and I really dont know much about it but it seems to be rather aggressive so I will have to learn fast.

What I mean is that I might be rather naive and it might seem as I am looking for the holy Grail ... But what else can I do?

There are 504 pages in this book about Sjs and only two of the cover B-cell Depletion (with Rituximab). And I can not say that the interest here is overwhelming. But why is that? Is it because it is (probably) not working?

I thought is was very new but now I understand that some clinics have done it for quite a while. I have tried to find more about it on internet but there does not seem to be very much.

Is there anybody who can tell me where to find more information?
 
« Last Edit: May 18, 2012, 05:08:12 AM by Sven »

rnathans

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Re: Your thoughts on Rituximab?
« Reply #4 on: May 18, 2012, 09:15:03 AM »
You will not find too much information about rituxan for Sjogrens because only a few studies have been completed and it is not currently FDA approved for Sjogrens. It is approved for RA. This is a fairly new treatment for any of the autoimmune diseases.

Sven

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Re: Your thoughts on Rituximab?
« Reply #5 on: May 19, 2012, 12:51:34 AM »
You will not find too much information about rituxan for Sjogrens because only a few studies have been completed and it is not currently FDA approved for Sjogrens. It is approved for RA. This is a fairly new treatment for any of the autoimmune diseases.

I guess that means that in the US it?s not possible to get treatment with Rituxan if you only have Sjogrens (regardsless if you sign some papers or pay for it yourself)? I wonder what it is like in Europe or the rest of the world.

How difficult is it to be some sort of "studying case"? 

Patty

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Re: Your thoughts on Rituximab?
« Reply #6 on: May 19, 2012, 02:15:45 PM »
Yes, I think it was just approved for vasculitis in the last year or so. I am prescribed it for vasculitis but I understand it can help with Sjogrens. Having much less muscle pain after the 2nd infusion than the first so that makes me happy. Just a little tired.

I am always wondering how aggresively to treat. The drugs do their own damage, especially long term, but I think the Rituximab is safer for me than the cytoxan and prednisone. I am hoping to get off both those drugs if this works.

Crymeariver

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Re: Your thoughts on Rituximab?
« Reply #7 on: May 19, 2012, 06:32:26 PM »
I was diagnosed with lymphoma caused by my SJS in 2010 and received 4 Rituxan infusions (one every week) in February 2011.  I had an allergic reaction to the infusion which was like the flu - high fevers and chills for a day.  The only other side effect was loss of hair that was actively growing at the time.  Although I'm not sure if that was the actual Rituxan or the fevers.  Most lymphoma patients have no complaints about Rituxan so I'm leaning towards the fevers as the cause.

I have not seen any improvement of gland function after treatment.  I still have dry eyes, dry mouth, and flares.  Rituxan only works at a particular stage of b-cell development and there are always b-cells waiting to mature.  When I returned to the oncologist in Feb of this year with symptoms of aggressive lymphoma he refused to give me more Rituxan stating:

1.  Rituxan usage has diminishing returns - if the first dose has a 2 year remission all subsequent remissions are halved.  2nd dose = 1 year remission, 3rd dose = 6 month remission...
2.  It should be saved in case the lymphoma becomes systemic.  It makes traditional chemo drugs more effective.

I will say that I opted for a 2nd biopsy and it wasn't a cancerous process at all and the Rituxan treatment in 2011 did put the original lymphoma in remission.  While the eye surgeon was in there he also injected the gland with more Rituxan which has only ever been tried in Italy.

Between Rituxan becoming less effective and the potential for needing it in the case of lymphoma, perhaps that is why it is a last option.  I think the impact from the disease would have to be much greater than gritty eyes and dry mouth to warrant it's use.  I had to fight for it with a lymphoma diagnosis and the oncologist accused me of just wanting it for SJS symptoms.  Besides it cost $14,000 per infusion!

You can look up US and international clinical trials at clinicaltrials.gov

« Last Edit: May 19, 2012, 06:35:33 PM by Crymeariver »

Patty

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Re: Your thoughts on Rituximab?
« Reply #8 on: May 20, 2012, 05:19:33 AM »
I had never heard that rituximab loses effectiveness after subsequent courses. I wonder if that is true for treatment of RA and vasculitis as well as lymphoma? My rheum said I will need infusions every 6 months to a year and never mentioned this and she is a very thorough doctor when it comes to discussing meds. The point of my trying it is to find a less toxic drug for long-term use since we haven't been able to control the vasculitis with anything but cytoxan and prednisone and I am only 50.

Crymeariver

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Re: Your thoughts on Rituximab?
« Reply #9 on: May 20, 2012, 08:23:36 AM »
Patty - I would ask your rheumy. Getting 4 doses in a month could very well cause a different reaction.  It is odd the eye oncologist and rheumy both asked why the hematology oncologist didn't suggest repeating the Rituxan treatment and both just took him at his word when I told them what he said. 

Did the first dose you received control the vasculitis?

Sven

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Re: Your thoughts on Rituximab?
« Reply #10 on: May 20, 2012, 09:44:31 AM »
It is really a big difference if it is working less and less or not

There is got to be somebody who knows more about this then anyone else and I would really like to find him or her. And I really can not understand why there is not more information when the drug has been used for quiet some time.

I will keep searching and if there is somebody who knows more, please let me know!
« Last Edit: May 20, 2012, 09:47:06 AM by Sven »

irish

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Re: Your thoughts on Rituximab?
« Reply #11 on: May 20, 2012, 12:05:16 PM »
Sven, I would bet that there is a lot more on the internet about the Rituxan than you are finding. My bet is that you are not using the right words in your search. There are a whole lot of reasons to give this drug and sjogrens is just one of the new ones.

My immunologist has talked about giving this drug to me but we have not persued it. There is a shortage of many of the chemo type drugs these days. Also, insurance companies will not cover and doctors will not order a lot of the drugs unless they have an approved diagnosis.

I am on IVIG every month. I have myasthenia gravis, sjogrens, bullous pemphigoid, Hashimotos and low t-cells. The only reason I could be approved for the IVIG was because I had the myasthenia gravis diagnosis. Also, I have the low t-cells which prevents me from taking the imuran, cellcept, and other drugs due to increased risk of infection, a problem that the low t-cells already cause. Soooo, I am on IVIG for the myasthenia and my sjogrens is some better as is my bullous pemphigoid. All my blood work remains elevated much of the time.

There comes a time when a person has to accept what is happening to their body. I know that if I get a cancer I am probably out of luck as the high dosages of chemo necessary to treat cancer would probably kill me. I just have learned to accept that. It is what it is!!

Is there a reason why your aren't on Plaquenil or Methotrexate, cellcept or imuran???? These are the first line treatments for many of the autoimmune diseases. Sorry if you mentioned this someplace along the line, but I don't remember. Good luck. IRish

Patty

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Re: Your thoughts on Rituximab?
« Reply #12 on: May 20, 2012, 01:00:13 PM »
Irish makes a good point. My insurance approved the rituxan only after I had tried imuran, cellcept and cytoxan. I also take plaquenil and have been on prednisone 7 years. Really, I could do the cytoxan infusions again as those worked to a limited extent, so I appreciate that my insurance approved the rituxan.

harrigan

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Re: Your thoughts on Rituximab?
« Reply #13 on: May 20, 2012, 01:01:05 PM »
Another thought Sven - have you searched the inet using the name MabThera?  It might throw up some more info.

I have to say I have not heard that the subsequent infusions lose their efficacy.  I'm sure if it were the case for RA I would have not been given it as I am still hoping for a drug which will control inflammation more long term.

Good luck with your searches.  xx Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

Crymeariver

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Re: Your thoughts on Rituximab?
« Reply #14 on: May 20, 2012, 04:30:34 PM »
Harrigan - less durable and shorter remission after subsequent treatments does seem to apply to lymphoma.  I just postulated that as SJS is the benign b-cell infiltration precursor to actual MALT lymphoma in some cases and occurs by the same mechanism, albeit slower, that it MAY be the same case for SJS and possibly why it hasn't been approved yet.  Interesting that you mention RA as that too has an increased risk for lymphoma.  Perhaps it works quite well for some AI disease with mulitiple doses. 

Sven - here is an article on Rituxan in SJS.
http://www.ncbi.nlm.nih.gov/pubmed/19000095