Some of you might have noticed that I am rather motivated to try B-cell depletion (when I am really sure I really do have Sjs that is ...) and I will try to explain why. Rituximab is normally given to people with severe Sjs as it is considered a "heavy" drug.
But late studies have shown that it might be most effective on people where the disease is aggressive and at an early stage. (Treatment of primary Sjogren?s syndrome with anti-CD theraphy (rituximab). A feasible approach or just a starting point? Meiners, Vissink, kallenberg, Kroese, Bootsma. publ Expert opinon).
It improved both dryness and fatigue and when repeated it had the same effect.
And is it really a heavy drug? Some people get serum/infusion sickness but very seldom severe. It is true that you dont know so much what happens when you do it for a long time but I have on the other hand no idea where this is sickness is taking me.
And one fact remains: this is is the only treatment that has had the a good effect on actually fighting the disease and not "just" the symptoms.
I would really appreciate all comments on what you think because I know this a road less traveled.
I can't believe you want to try something like Rituxan for dry mouth & eyes...correct me if I'm wrong that these are your only symptoms. Especially since you haven't even tried plaquenil (first line treatment). Actually I'm shocked a doctor prescribed you 15 mg of prednisone for these symptoms since steroids are used for inflammation (joint pain, etc), not dry eyes...and steroids come with a hefty price tag (sometimes even with short term use).
Back to Rituxan...it is for major organ involvement, not dry eyes/mouth. I have to agree with Irish on your other thread...You've been reading too much. Your obsession with research and your treatment (before diagnosis) may be playing a bigger role in your health then you realize.
I would think that the first step would be a B-cell analysis, to find out if your counts are indeed elevated........if they aren't there wouldn't be any point in wiping out normal counts.
In normal range, 10-20% of lymphocytes are B-cells, and of that percentage, +/-89% are monoclonal, with the remaining percentage being polyclonal and unlikely to be effected by Retuximab, so you're target is 9-18% of your lymphocytes. Remember that it is a percentage count, so even people with reduced white cell counts, not uncommon in Autoimmune disease, can have elevated percentages of B-cells, while those with white cell elevations can still have normal B-cell percentages.
The list of potential adverse effects is daunting to say the least, and even in approved diseases processes, like RA, at least in Canada, it's used only in combination with Methotrexate, and only after failure to improve on other modalities, like anti-TNF therapy.
I had several rounds of Rituxan over the years, and it did not help with my dryness at all...actually, prob made it worse to be honest.
Its a very toxic, powerful medication. It may help with other issues, but to me, did not with the dryness. I havent heard of one drug
that really helps with the dryness factor. I tried Imuran years ago and it did seem to give me some relief. Plaquenil too.
Gursie
I have vasculitis and Sjogrens and have tried every drug out there except methotrexate for the vasculitis. The plaquenil has worked well for my Sjogren's symptoms combined with fish oil pills, punctal plugs, and eye drops ointments. In fact, I rarely need drops or ointments any more. You really should give those options a go. I had rituxan infusions recently because I have vasculitis affecting my brain which is pretty darn scary. A single rituxan infusion cost over 19,000. I may need 4 a year. I had to try everything else and have it fail before my insurance would approve it. I worry about what will happen if I ever lose my insurance. I am not so sure I consider it terribly toxic. It has no cancer risk. But after having it, I felt like - Whoa! I have done something serious to my body. It is working for my vasculitis, but a month after my last infusion I am still very fatigued.
Sven, I understand your desperation to be aggressive in treatment of this disease. I feel the same way. I have been taking Plaquenil for only two months, as well as prednisone, but have yet to see much improvement. Every other time in my life when I have taken medication for an illness, like strep throat or a UTI or a cold, there was always resolution of symptoms.
It is hard to think about an illness that is chronic, that there isn't going to be a pill to fix things. That is so depressing. Plus, I feel like surely the drug cannot be very effective because it takes so long to work. I asked my rheumy about the biological drugs and other drugs, but he seems convinced that this will work for me soon, that I have to try. I feel desperate to try the more potent drugs to aggressively contain the disease even though trying this less toxic route is first on my list.
I just wanted to let you know that I can relate to how you are feeling. Hang in there. I think it is worth trying the Plaquenil first. I have had this disease for most of my life. It is slow moving so far, and I think I have some time to let it try to work.
Thanks for all your response and i really appreciate it. It means a lot to hear your opinions!
You can read more if you search: "Treatment of primary Sj?gren?s syndrome with anti-CD20 therapy (rituximab). A feasable approach or just a staring point".
I am still very motivated for it (when I think do my Sjs is really confirmed).
And a B-cell analysis sound like good thing.
Thanks!
Rituximab is an expensive and potent drug.
Although debilitating, Sjogren's Syndrome symptoms generally aren't as severe as Lupus, Rheumatoid Arthritis and other forms of autoimmune arthritis that cause damage to the organs and joints. I don't know what your symptoms are, but for dry eyes, mouth, joint pain and fatigue, chemotherapy would most likely not be advised.
There are other, cheaper and potentially less damaging medications out there used to treat Sjogren's (and the conditions I mentioned earlier). If they work, then that's ideal. Why go on expensive medication that has a long list of side effects when a cheaper, safer medication can do the same thing?
Yes there have been trials to see if it's helpful for people with Sjogren's Syndrome and I haven't read the results, but I would assume these people would have some improvement. But you'll notice that there's no one with Sjogren's (Lupus, RA, AS whatever) that goes straight to Rituximab. Once you have a diagnosis(!) there are medications that the doctors will suggest to trial first, if they don't work then there are other options. The biologic drugs are for those with a severe disease who do not respond to other medication.
I agree with the others. Stop reading so much about this. Go and see a doctor. They know your medical history and can see the results of your tests. If you go in there and tell the doctors this is what you have and this is the medication (that's reserved for those with a severe disease) that you need to be on, they will write you off completely. To be blunt, you'll just end up talking yourself into feeling this way.
Thanks a lot Matildamillicent but I think you and some others are wrong. I hate to argue when you are being so nice but ...
"Why go on expensive medication that has a long list of side effects when a cheaper, safer medication can do the same thing?
I have the siccasymptoms and the fatigue and I am getting worse fast.
Three months ago I started with Salagen and it really helped but now I am as dry as before taking it. I also take all kinds of "natures best", Bromhexinhydrochlorid (Bisolvon) and since two week I am on 15 mg/day Prednisolone and Plaquenil.
I eat a strict diet that is supposed to be good for people with immunediseases and I do not drink alcohol anymore.
The fact remains, I am getting worse all the time. So what else is there to try?
"The biologic drugs are for those with a severe disease who do not respond to other medication."
There are trials that shows that those who benefit the most from Rituximab are those with a Sjs that is aggressive and where it is in the early stage. And again, Rituximab is the only drug that fights the actual disease and not the symptoms. Maybe it can prevent it from being severe?
"Why go on expensive medication that has a long list of side effects ..."
I does not seem like there are many side effects. Some people get serum/infusion sickness but it is usually not very bad. It is not very known what happens if you take it over a longer time but so far it seems to be safe. I think for example that the side effects from Prednisolone seems much worse.
"I agree with the others. Stop reading so much about this. Go and see a doctor. They know your medical history and can see the results of your tests."
My first doctor was a professor in rheumatology. He looked at my negative blood test, pressed my hands and asked if it hurted (it did not) and said: "no I do not think you have Sjs and even if you have it there is nothing we can do!".
It took me about one hour on the internet to find out that I still can have Sjs, that there are things to do and that he was an idiot.
My second doctor took more test and said: "no I do no think you have Sjs". Two weeks later he said: "since you are getting worse all the time I will try Prednisolone for three months". So now I do have Sjs. He has a lot of experience with Sjs and I think he is very good but I also think that Sjogren being so hard to diagnose it is really hard to tell what it is going on.
And therefor it is really important that we ourself learn as much we can because the doctors will not have all the answers and when they do it might be the wrong ones. They can not know how bad I suffer from my symptoms, what risks I am willing to take or If I am willing to sell my house to pay for the treatment.
But please, please dont think I am not grateful for your advice because I really am (and you are probably right also ...).
Thanks!
This isn't an argument. I think we all have each others best interest at heart and just trying to help you.
We all have sicca symptoms and many here have other more severe symptoms (i.e. organ problems, joint deformities). You don't have a firm diagnosis of Sjogren's Syndrome and it doesn't seem like all other options have been been explored. There are so many other conditions that cause dry eyes, mouth and fatigue. My specialists have also told me that sometimes people just have dry eyes and mouth without a cause. You do not appear to have any symptoms affecting your joints, blood vessels or organs, so if anything you would be categorized in the 'mild' disease regardless of how debilitating your symptoms are. However I have to say, when I'm feeling fatigued/bad, I do not have the energy to be on my computer posting lengthy replies like yours.
Plaquenil can take months to work. I have read you will not feel the full effects until the 12 month mark. After 2 weeks, you wouldn't expect to feel any different. And I'd also like to comment if you're not feeling much better on 2 weeks of 15mg of Prednisone, it doesn't look likely to be an autoimmune inflammatory/connective tissue disease. On Prednisone I virtually feel like a normal person.
Diet hasn't really proven to make much difference in these conditions. But all in all, it sounds like you've been on these medications for 2 weeks. In order for your doctors to even being to consider you as a candidate for a biologic, you would have to have at least 6-12 months on Plaquenil and most likely try a number of other drugs and fail those also.
I think everyone is concerned that you don't even have a confirmed diagnosis of Sjogren's (or anything autoimmune) but it seems like your doctor is trialing you on Plaquenil anyway. That is good and if I was in your position I would be over the moon with that.
Yes there are trials, but I am yet to hear of someone on a biologic for primary Sjogren's. These medications are generally saved for those with symptoms that could cause death. You have dry eyes and mouth and fatigue, you're not going to die. Plaquenil does the same job, it fights the disease and slows it does, that's why it's a DMARD.
Yes there does not appear to be that many side effects (other than risk of severe bacterial and fungal infection, activation of TB, cancer, drug induced autoimmune diseases- Lupus and Psoriasis) but this drug is still 'young'. We do not know the long term side effects or what happens 30-40 years down the track. Plaquenil, Methotrexate, Prednisone etc, we do know and that is why they are safer.
This study you're quoting appears to be the first study ever done with this drug in Sjogren's. Who knows if another study will present with similar findings. You may not have been following the Chronic Fatigue Syndrome XMRV virus which is linked to HIV. One study showed yes definitely linked so there was a HUGE fuss, then no further studies could replicate the findings. Have you seen this study? -http://www.ncbi.nlm.nih.gov/pubmed/15077311 "Inefficacy of infliximab in primary Sjögren's syndrome: results of the randomized, controlled Trial of Remicade in Primary Sjögren's Syndrome". Conclusion- This randomized, double-blind, placebo-controlled study of an anti-TNF agent did not show any evidence of efficacy of infliximab in primary SS.
Yes Prednisone is not a drug you want to be on long term and I would have no idea why your doctor prescribed it to you for fatigue and sicca symptoms. I'm only ever prescribed it for when my arthritis flares up and that's for no more than 2-3 weeks at a time.
Your first rheumatologist was probably just meaning it was extremely unlikely. He doesn't sound like an idiot, just looking at what was in front of him at the present time. I don't see anywhere in what you've written about the second doctor that would imply you have a diagnosis. These doctors do not go to medical school for years for nothing. They know a lot more than your couple of hours on Google.
I just believe (and I see I'm not the only one) that you're getting far too ahead of yourself. You're on Plaquenil, it's the first line of drug for people with Sjogren's Syndrome. You're not going to have a doctor risk their medical license to prescribe you an expensive (whether you pay for it or not) potentially dangerous medication when Plaquenil (relatively safe about approximately $60USD for 3 months) could and probably will do exactly the same thing. I find when I get caught up in reading about my health, I feel worse. Why don't you take a week off from Googling all your medical conditions and see how you feel?
Getting rituxan is not a cure by any means, its very toxic....its a chemo drug? I guess its less toxic then cytoxan though. Ive had Sjogrens almost my entire life and tried everything, including Rituxan.
To be honest, if my stomach could tolerate Imuran, I would be on that. With that and plaquenil, I found the most relief. My chronic pain from neuropathy actually seems worse after the Rituxan?. I think your looking for that magic potion and the quick fix, but not sure Rituxan will meet your expectations. Some of these medications, like plaquenil take almost a year to work for some. I know from reading about those with lupus who have it and did Rituxan, it did nothing for them long term. I know when your desperate, anything is worse a try. You will have to decide on your best course of action.
After my rituxan infusion, I found my fatigue got worse, and did not see or feel any changes for the better. Now, maybe it did something, but nothing according to the way I felt, or my labs indicated anything positive from it. This has been the course over the last 5 years.
I just talked to my doctors about it again, and my hematologist, who uses it quite often for his cancer patients, said a lower dose spread over
4 weeks seems to target the b-cells better, and also less side effects. Ive tried so many of the other medications, but felt super ill after all of them. We also have higher increase for infection. If you procede with Rituxan, make sure your docs check your immune system...t-cells and immunoglubulins etc. What about some IVIG? not sure if you tried that?
good luck
Gursie
Sven, I have to say first of all, totally dig the name. Sven is my Dad's middle name. Second, my gut reaction to your post is "what are you thinking?!" My second gut reaction is who is your doctor and how soon can I get an appointment? My internal doctor is more than happy to help, to see me, to provide meds for symptoms. But my rheumy is a tight wad with the drugs. I have tried Imuran and Plaquenil and had awful gastrointestinal difficulties to say the least. At my last appointment, my rheumy and I talked about using the off label IV drug for RA. She has to beg my insurance company to use it and I have felt like I had to beg to try something else. Your doctor apparently is loose with the prescription pad because getting predisone from either one of mine is impossible and I have nasty things going on compared to your dry eyes and mouth. I am not belittling your discomfort nor your desire for a magic wand. (If, by the way, anyone finds one...they better share it.) I am wary of anyone who wants to throw the big guns at the small targets. You don't need an atomic bomb to kill a fly. I would save those two drugs you are being offered and put them in your pocket for a rainy day...the day being you can't get out of bed because you are so exhausted, hurt so bad, it's attacking your lungs, kidneys, etc. For now, get some eye drops, some mouth spray and a good dentist and eye doctor.
I hope your eyes and your mouth feel better soon!
Persephone
Many on these boards do get relief from fatigue and dryness with plaquenil, but after 6 months, not 2 weeks you need to have some patience.
None of the stronger drugs are benign and often make you feel worse, which is why they are reserved for systemic and major organ or nerve damage.
Finally, while researching rituxan do a search for rituxan and PML. Be sure you understand what PML is. Rituxan may be worthwhile in rare severe cases, but not in yours.
Hi Sven,
I dig your name too :). I know how you are feeling. This disease - even when the diagnosis isn't firm but the suspicion is strong - if very, very scary. I know I had some tough days absorbing what it actually meant for me. How it would and worst of all, could affect my life, my children's futures, my finances, etc. And the dryness - wow - how unnerving is that crap!
It can cause much concern, desperation, anxiety, and a totally uncontrolable swirling of the mind. This is a life-long disease. I have a real admiration for children born with diabetes - they have such a long life dealing with a disease that is so hard, and they are just babies. That's tough, really tough.
Despite all the knowledge and super-brains working on diabetes, there is still no magic bullet for it. But the methods for managing it are getting so much better.
It's all a lot to deal with Sven. Sjogren's is a hard one and can be so random at times - so managing it can be a real hard struggle. But you can do it - you have to do it. Sjogren's will give you no choice.
You may want to try talking with a counselor that specializes in chronic illness issues. She will help you figure out a way to cipher all of the information, give you decision making tools, and help you deal with the desperation that's lending you to such a drastic choice to treat dry eyes and mouth. I'm not saying those issues aren't serious enough in their own right - it can cause some adverse stuff if other parts of your body, but you're a smart person, who sounds proactive and willing. I know in my heart you can handle a management plan - especially if you are willing to take chemotherapy.
I wish you comfort Sven. It will come, and you will be okay.
I have t add that there are other medications that will treat the sjogrens. Imuran is having a good track record according to one of my doctors. He does put people on the Rituxan, but not until they have done all the other medications.
I have been on low dose Plaquenil for about 8 months and a couple of months ago my lung tests were almost back to normal. I was so surprised and then got to thinking later that the inflammation was probably lessened with the plaquenil.
I do notice that I have a little more moisture in my mouth, but at the same time I have more dryness in my eyes lately. I don't panic cause lots of times we can "flare" and then later on down the road find that things are more normal for us.
I also noticed that there was a lot of pollen this year with the grasses, etc with all the rain. I know that bothers my eyes. I guess I would advise you to just lay low and see what comes down the pike.
There is no way I would do the Rituxan until I had tried the other possible treatments. Even if I was having a rapid increase in symptoms. The only thing that I can think of that would cause me to go on the Rituxan sooner or with a shorter duration of Imuran, etc is if I was having ani inflammation that was causing me to lose my "brain power" from something like vasculitis or a neuropathy. I would want to make sure I was getting the right diagnosis for sure. Like others have said, there are other causes for dryness.
Dryness is no considered a life threatening issue to me. It can make a person really miserable, cause pain with breathing and made me lose my teeth. This alone was terribly inconvenient while going to the dentist, expensive, trying to work with infections and absent teeth, etc. But not life threatening.
Guess you had better keep updating us on your trip through this maze. Good luck. Irish.
P.S. I just read through this and guess that I had better add lungs and kidneys and of course,autoimmune heart issues on the list of big time issues for the Rituxan. Irish
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
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
I am really, really glad for all you wonderful people out there. I hope I can do something for you someday!
oh yea, I forgot to add "I dig the name Sven, too!" ;D
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.
also the may 4 blog here has some interesting thoughts on rituximab
http://www.x-rx.net/blog/
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
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
"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!
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
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.
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
Quote from: gurs on June 21, 2012, 03:57:09 AM
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!
QuoteI 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.
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
I can update you on my experience - I am over a month out from my second infusion and just getting my energy back. I was very fatigued and could do almost nothing physical for a month afterwards. I mean NOTHING physical.
So ... I lost 2 months to feeling very poorly during and after infusions. If I do this every 6 months that is costing me 4 months out of the year. And infusions are $19,000 + so that is about $80,000 a year. Thank God for insurance. My cost is $3,000/year for deductible and co-insurance.
I do feel wonderful now. No symptoms except from damage that is irreversible and very good energy. I feel better than I have in many years and am starting to exercise, taper prednisone and even look more like my old self. I find I am interested in life again and feel like I have gotten my "spark" back.
The big question is: How long will it last? I had great results with Cytoxan infusions but was sick again within three months. Keep in mind I am getting rituximab for CNS vasculitis which is quite serious and can damage the brain, so for me rituxan is worth the physical and financial cost. Also, I had tried everything else out there. I have been treating for 6 years. Also, remember, everyone reacts differently to medications.
The way I understand it the Rituximab kills off the B cells and then one has to wait while the body makes more new b-cells and hope that they do come back and come back in a more healthy condition. Not anything to be taken likely. The chances of death caused by overwhelming infection is not to be taken lightly. This is why the docs make sure that a patient has tried all the other drugs first.
Many people do very well on the Imuran, cellcept, etc. type drugs and have years of much better health. As far as getting rid of the dryness, that sure is up for grabs. It is one of these things that is not for certain. We know that if the salivary glands and moisture glands in the eyes and other organs when killed off dead can't be revived and this is known as the damage that is irreverible.
I also want to say that many people think they are dying when they have certain symptoms and others can just keep on keeping on in spite of it. This is hard, but not impossible. This is why the doctors don't rush into the heavy duty treatments.
It really is better to keep on keeping on as long as possible. I know that a lot of people here have worked with many health issues. I worked when I was so weak from undiagnosed myasthenia gravis that I could hardly hold myself up. This included cleaning apartments and scrubbing bathroom floors when the assisted living was short of help. People asked me why I didn't quit work and I told them that no one had told me I was sick so I would not give up until I knew what was wrong with me.
Many of us have worked in great pain, with teeth missing and terrible dental infections, balance issues, weakness, numbness, fatigue beyond description. It is amazing what the human spirit can endure. To sit down and wait for death, or whatever the heck the next episode is, does not appeal to us.
My hubby who is an autoimmune patient for many years, along with multiple other issues, always says that "People die in bed" so that is why he gets up and keeps moving. I guess the bottom line is that we all do the best we can and sometimes suffer a lot. But, eventually, there seems to come a time that a medication is found and given that alleviates much or some of the suffering. Life is not without its challenges and our ability to perservere makes a huge difference.
So, Sven, I would advise that you think about the fact that the doctors will want to use some of the oral medications first as that is most likely what will happen. You are miserable but not sounding like Rituximab will be considered due to the criteria needed to get on the list-so to speak. Just my humble thought. I hope that you can get some relief soon. Irish
Irish,
You are right about the dryness - I have seen no improvement with that with the rituxan. I am not having it for Sjogrens, but for vasculitis. The thing that seemed to help with eye dryness was fish oil and plugs. I rarely use drops now.
Unless your crawling around on the floor and your bosy is going insane,, do not get it, I am one of the lucky few who had it and it did nothing but make me sick as a dog,, dont jump ahead of yourself looking for a cure that isnt tehre,, its not worth it,, this was same rheummy who had me try a pulse steriod treatment,, 1000mg a day by IV for three days,, yep,, 1000 mg,, by day three I had no clue what country I lived in ,, of course it did nothing,, so stay the course on the mild stuff,, theres a heavy heavy price to pay for the hard stuff
Yeah, I felt actually more fatigued than before I had the rituxan...and my dryness seemed worse. But, I think I had less flares. I havent had it now in 2 years, and my body just is flaring all the time? I think it may do some good. I think the plaquenil is the only thing I noticed that helped with the dryness. You also have to watch the medications and supplements your taking. Even motrin can be drying...antidepressents, antihistimines, alot of natural stuff as well. Im sure we are all aware. I cant take much of anything, even though my allergies are horrible..
My medrol is also drying....cant win!
As far as the debate regarding our moisture glands... most docs said they are destroyed, but Im tending to not believe that. I can be so dried out, yet when My allergies flare, I get the fluid-running nose and my eyes get more moisture? how is that if they are destroyed? does not make sense. Im thinking its just some form of inflammatory reaction and neuro issue possibly? just my thoughts?
Gursie