Rituximab (B-cell Depletion) a good treatment for primary Sjs?

[gold55]

hey Sven,
I am not an expert like the others but I can tell you about my case.   I don't have all the issues that are typical of SJS right now but I do have the positive blood markers and I do have deformity in the joints of my feet.  My hands seem to be starting some type of inflammatory arthritis as well.  In some of Elaine Moore's articles she states that SJS can eventually cause erosive arthritis in the hands and feet!  I believe I've had SJS for a long time but it didn't choose its typical path.....it has left me with minor dry symptoms, etc but has focused more on my feet and hand joints.  My point is that I am still not on Plaquenil and I'm still thinking it over.  I believe that rheumatologists are more concerned with aggressively treating the joints and not our dryness.  My rheumies wanted to watch me for a year to see what developed and what might resolve prior to putting me on a harsher treatment.  So in six months I'm sure I'll begin the Plaquenil so that my feet and hands don't progress to a point of disability.  I'm just saying not to rush.....I am totally surprised that your rheumie put you on Prednisone!!!  Perhaps I didn't hear you but I failed to read about any joint problems, swelling, etc.  Take your time before you jump into something you may not need.  I know when I became so freaked over my diagnosis that my dryness got much worse.  As soon as I calmed down and accepted my fate, I actually felt way less dry   I understand your plight but please don't move too fast.
Hope you feel better as you get closer to some resolutions over this mysterious disease we share!
Jill

[gurs]

Again, even with the big guns like Rituxan, and in my experiences, it did nothing for the dryness or anything that I could tell, and I felt extremely ill for months after. You also increase the chance for infections big time. Not saying this might happen to you or others, but
would be cautious and dont want you to get your hopes up thinking you will have rituxan and boom..will feel 100% etc.

This is a horrible, chronic, illness and its really hard to deal with, especially when you feel so yucky most of the time.
I hope you can take some of the advice from others above, and talk with a few more doctors.

take care

Gursie

[Sven]

I am really, really glad for all you wonderful people out there. I hope I can do something for you someday!

[gold55]

oh yea, I forgot to add "I dig the name Sven, too!"

[wendyoh]

Here is some interesting info on rituxmab study:

http://debortgjemteinternational.wordpress.com/2011/10/30/how-important-is-the-rituximab-study/

and Gursie I am curious where u live that they would give it to you? from what I have read people don't notice they feel better for months after taking it. Sorry if you got too big of dose and it threw the game off.

[wendyoh]

also the may 4 blog here has some interesting thoughts on rituximab

http://www.x-rx.net/blog/

[gurs]

I first tried Rituxan almost 6 years ago because of my severe sjogrens and lupus that all other medications did not respond to.
I tried them all..plaquenil, methotrexate, Imuran, cellcept, arava, IVIG..the list goes on. I also have alot of CNS issues and vascular issues, as well as some RA..That is why I was approved to take it. Before this, I also consulted with doctors at Johns Hopkins and Cleveland Clinic.
All depends on the severity of the disease. I have tried Rituxan several times and the side effects are extremely hard. The first infusion went well and I didnt notice any flares until 6 months after, usually when your due for another infusion. I tried again and had extremely hard time with the side effects of the rituxan, even at a slow, slow, rate taking all the pre-med's and precautions, etc. I havent had it in 2 years and I just keep getting sicker. I think it may have worked as a preventative, but no relief from the dryness or anything really noticeable.
My hematologist wants to try the once a week, lower dose thing, but my immune system is not good. No t-cells and immunoglobulins are low.
Soooooo..not sure what Im going to do at this point..

I live in Michigan...

Gursie

[harrigan]

I had the 1st infusion of my 2nd course on Monday - 1st course in December.  I noticed an improvement in my pain and inflammatory markers in Feb for a couple of months but have had a very stressful time lately and was really struggling.

I have been on Plaquenil, MTX, Arava, Enbrel and Cimzia in the 3 years I've been diagnosed with SS - 2 years diagnosed with RA.  Even if it was possible, I would not have wanted to rush past more conventional treatments and onto biologics.  No treatment is without side effects but Rituximab leaves me feeling drained and stunned.  I still have to get on with work, family and other responsibilities though. 

For those of us who can't give up work, take a back seat in caring for family etc, these drugs may be necessary.  I wouldn't want to pre-empt what may happen down the line though.

XX Ailsa

[Patty]

"Drained and stunned" - that is how it leaves me feeling as well, yet at the same time I feel well and symptom free. In fact, my body feels oddly calm, like I am not fighting the vasculitis for the first time in seven years. I think that is a huge step forward for me and hope my energy will come back eventually. Fortunately I no longer work and am an empty-nester so I can nap at will!

[wendyoh]

thanks you guys its helpful and interesting to hear about people actually taking this stuff its just been a mystique research thing I read about, makes it more real

[Sven]

I am also very thankful for hearing for you people who have tried it. Reading trials on the internet is one thing but this really gives another prospective.

[gurs]

I know several of us had Rituxan...good to get an opinion on their experiences with it. I rely on this site and the members because we have been through it...I dont care what the studies show either..I think alot of them are useless. Our bodies are all different too. I guess we just need to keep trying to see what helps each of us.

Good luck in your quest...give you tons of credit for effort in helping yourself..seriously...hang in there k..

Gursie

[Sven]

Good luck in your quest...give you tons of credit for effort in helping yourself..seriously...hang in there k..
Gursie

Thanks!

Some have said I should stop reading so much but I dont agree. I think the best way to try and get the right treatment is to learn as much as possible about the disease. I have learnt tons here for example.

I have learnt that you should have faith in your doctor but never take for granted that he is right on everything. When I first understood that there was something wrong with me I just took for granted that the doctors would find out what was wrong and that I would be given the best possible care.
But Sjs seems to be a really difficult disease both to diagnose and treat and I now feel that I am the one that knows my body best and have to have a saying on what is best for me.

Others say, since my symptomes are only fatigue and Sicca, that I just should get a good dentist and forget about Rituximab. I dont agree (yet). I think we are all affected differentely and the "suffering" is highly individual. For me it is just heartbreaking and bad enough not being able to do some stuff with my daughter because I am too tired. I want to have atleast eight more good years to give here.

And about Rituximab "everybody" says it is a heavy drug with nasty side effects and that it should should be used in severe cases. I, on the other hand, dont agree (so far) and have read that the effect are better if you take it att an early stage of the disease and that the side effects are not very severe. And by not very severe I am fine with having infusion sickness for a couple of weeks if it can help me in the long run.

I really appreciate your thoughts (how else will I learn?) but I would also appreciate if you can give me some "hard facts" on Rituximab and be more precise why you think what you think. What severe side effects can you get for example?

I am really sorry if it sonds that I am ungrateful and argumental. But I can assure you that it is absolutely not my intention.

I am just so thankful for your thoughts!

[Linda196]

I would also appreciate if you can give me some "hard facts" on Rituximab and be more precise why you think what you think. What severe side effects can you get for example?

Thanks for a matter of fact question, to which I can provide a matter of fact, non-judgemental reply.

Taken from medicinenet.com: "severe side effects may occur several weeks to months after your last treatment, so it is very important to keep all your follow-up appointments. Seek immediate medical attention if you have trouble breathing (e.g., cough, wheezing), itching, swelling (especially of the throat/lips), dizziness, fast/slow/irregular heartbeat, or chest pain.

Serious (sometimes fatal) skin reactions (e.g., Stevens-Johnson syndrome) have occurred in people taking this medication. Seek immediate medical attention if you develop any rash, blisters, peeling skin, or sores. These reactions can occur weeks to months after your treatment has ended.

A serious (sometimes fatal) brain infection (Progressive Multifocal Leukoencephalopathy-PML) has occurred in people taking this medication. Seek immediate medical attention if you develop any signs of PML, including vision problems, loss of balance/coordination, or confusion"

Side effects noted as rarely occurring need only to affect 1-10%...that can also be read as a 1 in 100 or 1 in 10 chance.

I think possibly the reason you consider the incidence of side effects may be lessened with early treatment is the reference to Tumor Lysis Syndrome which is a constellation of side effect symptoms ranging from kidney failure to cardiac arrest which are dependant on tumor load, and the resulting sudden accumulation of destroyed cells, therefore treatment early in diseases like non-Hodgkins lymphoma when the tumor load is smaller run less risk.

From MedlinePlus: "Rituximab has caused severe skin reactions. These reactions have caused death. If you experience any of the following symptoms, tell your doctor immediately: painful sores, ulcers, blisters, rash, or peeling skin.

Some people who received rituximab developed progressive multifocal leukoencephalopathy (PML; a rare infection of the brain that cannot be treated, prevented, or cured and that usually causes death or severe disability) during or after their treatment. If you experience any of the following symptoms, call your doctor immediately: difficulty thinking clearly or walking, loss of strength, vision problems, or any other unusual symptoms that develop suddenly"

Health Canada Alert: PUBLIC COMMUNICATION
Health Canada Endorsed Important Safety Information on RITUXAN (rituximab)

June 7, 2011

Subject: RITUXAN® (rituximab) and Severe and/or Fatal Infusion Related Reactions in Patients with Rheumatoid Arthritis (RA)

Hoffmann-La Roche Limited, in consultation with Health Canada, has informed health care professionals of important safety information regarding RITUXAN® (rituximab) in Rheumatoid arthritis patients and severe infusion reactions.

RITUXAN is a medication that is given by intravenous infusion to treat lymphoid tissue and bone marrow cancer as well as treat adults with moderate to severe rheumatoid arthritis. 

Roche would like to inform you of the following:

•Severe infusion related reactions resulting in death have been reported in four persons with rheumatoid arthritis who were given RITUXAN.  None were in Canada.
•An infusion reaction can include the following: fever, chills, difficulty breathing, tightness of chest and/or throat, upset stomach, and rash.  Notify your healthcare professional if you experience any of these symptoms.
•If a severe infusion reaction occurs, RITUXAN administration needs to be stopped.
•As severe reactions can occur during the infusion of RITUXAN, it is important that you are closely monitored during and after the infusion by a healthcare professional, especially if you have a heart condition.
•It is important that you receive a medication to reduce fever, such as TYLENOL®, an antihistamine, such as BENADRYL®, and a steroid such as Prednisone, before your infusion of RITUXAN.

This is a partial compilation only, but they get repetitive and space is limited.

[gold55]

Sven,
Knowledge is power!  In this day and age "one MUST be proactive about their health"!  I respect how you're handling your issues and I say, continue on young man as you will be the decision maker in the end, not anyone else!!!! 

Jill