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Is Anyone Else Scared of Rituxan?

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I used to think I wouldn't take it but now, with the way my illness has progressed and at times I feel like iw would rather die then it would seem to me that I would now be up for it.

On the other hand I have had a lot of lung infections in the past and Drs cant work out why this is. KDM has dx me with three chronic infections so [perhps NOT a good idea? but do I want to get my life back - yes anyway I can
do I want to live like this for much longer - No.
 

msf

Senior Member
Messages
3,650
Sorry to hear you feel like that, Justy - I felt like that last year when I first became ill, as my condition was much worse then. Hopefully your condition will also change for the better soon, I would say that as a patient of KDM you have a better chance than most of getting better.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Am I scared of it? Absolutely (I also have a needle phobia, so three hours of IV...)

But I'm missing out on too much life. I've never known what it is like to do things other people have for granted (eg a job, long term relationship etc).

If the efficacy of the drug is proven and it is affordable for me in Australia (subsidised), then I will definitely try it. I don't have much to lose.
 

DanME

Senior Member
Messages
289
I am so happy that Rituxan is helping some with ME/CFS, but I don't know...the thought of taking a chemo type drug for this illness is unnerving.

Does anyone else feel the same? Maybe it's just because I have a hypersensitivity to meds and have other immune diseases, but it just seems so....drastic.

Again, I am happy it works for those it works for and YAY, but wow....it's a little scary.

No. I am not scared of Rituxan! I think proper knowledge is the key.

Rituxan has nothing to do with the old kind of chemotherapeutics, which are very unspecific drugs with an impressive list of side effects. Rituxan in comparison is a very modern drug and very specific in what is does. It eradicates B cells and nothing else. No hair loss, no heavy nausea, no vomiting. Nothing you associate with classic chemotherapeutics. Of course, RTX has side effects, too, but there is good chance, you will get only mild ones during treatment.

Also it is on the market for 20 years, which means we know how to handle the drug quite well. It is used in lot of other conditions with great success, like in RA and some kinds of Leukamias and Lymphomas. Also in other autoimmune conditions.

What the Norwegian group does, looks very promising. At least for a subgroup of patients. And so far, nothing very dangerous happened to ME patients, which have been treated with RTX. At least not in Norway as far as I know of. One patient in Germany though says his condition worsened with RTX. Though we don't know much about this case. But anyway, that's why we need to do proper studies first. And the Norwegian do exactly that. After the phase III we know more about risks.

Of course, nobody knows yet, if ME is autoimmune. But the cases, which have been helped by MTX, RTX and Cyclophosmphamid are a strong hint, that this might be the case. At least for 50% of the patients. I want to add, that we don't know either, if ME is caused by a pathogen. A lot of speculation, but no ultimate proof.

Also I am not aware of any other drug, which got at least some patients into total remission. I mean, that they feel 100% healthy again. Our condition is horrible and our quality of life is very poor. So any kind of chemotherapeutics would be in theory appropriate for us. The benefits would outweigh the potential risks by far. People get RTX for much less horrible symptoms and circumstances.
 
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Folk

Senior Member
Messages
217
It's not a controversial statement, a fatal reaction to the infusion is a possibility.1 In addition, there is a risk of developing a fatal infection during treatment.1 2 3 With that said, I have no idea what the actual incidence is of fatal reactions. I imagine it's low.

It is a controversial statement. He didn't say Rituxan has a risk of death like we all know (and as I've been reading is pretty low). He said it would cause "unecessary" deaths.

And I asked because I belive I know who the doctor is.

Yes, I'm scared of it.

But I'm also scared of the consequences of not trying it.

That sums up for me. @jeff_w hit the point.

Would I rather not take it and be healthy? Sure... But facing reality, I'm more hopeful than I'm afraid.

Finally a treatment that can show remarkable improvment. That's enough for me.

My main fear isn't even death, is to get worse and sicker (and that just show how this disease is horrible, so anything that can treat chemo or wathever is welcome), I don't know how the odds are on about that.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
a doctor i spoke to once said it will cause some unnecessary deaths in CFS patients

No. This is wrong. Thirty years of non-research and constant neglect and abuse causes unnecessary deaths in our population. If patients are given dangerous treatments with fully-informed consent, how can adverse outcomes be characterized as "necessary" or "unnecessary"?

This illness is gonna kill me one way or another, and it looks to be sooner rather than later. I'm not afraid of dangerous treatments. I'm afraid of not being able to get food. I've already been told by the gatekeepers that I don't qualify for help with obtaining the necessities of life.

Death by neglect or death by toxic treatment? That's an easy choice for me.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@justy, so sorry to hear that you feel like that at times. We all sympathise. Make sure you reach out to our little community whenever you need to. And always remember that we fluctuate and that, by definition, when we're at our worst, we can't get any worse and there's only one way to go and that's upwards, even if it takes a long time. A big hug to you, if that's ok with you. :hug:
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
My understanding is that rituximab is quite a safe drug if administered professionally and carefully. Some people have an immediate allergic-type reaction to it, but that can be monitored for, during the intravenous administration period. Apart from that potential reaction, it has a tolerable side-effect profile. Rituximab is possibly/probably safer when not given with the mix of other severely toxic drugs that are often prescribed to cancer patients, which is perhaps why Fluge and Mella haven't reported any severe adverse events. I can't quite remember if a very small proportion of their patients may have responded negatively to rituximab, but nothing serious had been reported as far as I'm aware.

There have been some anecdotal reports of ME/CFS patients getting worse after rituximab. I don't know if Fluge and Mella have witnessed this phenomenon to a significant degree. In a YouTube video with Judy Mikovits, a German doctor (not related to Fluge&Mella - I can't remember his name) said that he knew of 10 patients who had been given rituximab locally. Two or three had got worse after receiving it, and the other patients didn't respond well, but we don't know what selection criteria were used for the patients, or how rigorously the selection criteria were applied, and we don't know exactly what treatment regime or dosage was prescribed.

So it seems that there may be some significant risks, for ME/CFS patients, but the German situation is anecdotal so it's not particularly informative.

Fluge and Mella, and the UK team (that Invest in ME are funding), are trying to find biomarkers that identify patients who respond positively to rituximab. If they have any success with that then we won't need to worry about some of these issues.
 
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dannybex

Senior Member
Messages
3,561
Location
Seattle
Apart from that potential reaction, it has a tolerable side-effect profile.

I guess that depends on how sick one is. To me, the drug's side effects, with a few exceptions, almost mimic the symptoms of ME/CFS:
  • fever, chills, body aches, flu symptoms, feeling weak or tired;
  • ongoing cold symptoms such as stuffy nose, sneezing, sore throat;
  • headache, earache, painful mouth ulcers, skin sores, warmth or swelling with skin redness;
  • pain or burning when you urinate, urinating less than usual;
  • severe skin rash with blistering, itching, peeling, or pus;
  • weak pulse, fainting, overactive reflexes;
  • muscle weakness, tightness, or contraction; or
  • lower back pain, blood in your urine, numbness or tingly feeling around your mouth.
Other common side effects may include:
  • mild stomach pain, nausea, or diarrhea;
  • muscle or joint pain;
  • back pain; or
  • night sweats.

Why anyone would want to add to their misery is confounding to me. Also, it's my understanding that these few reported remissions are temporary.
 

Daffodil

Senior Member
Messages
5,875
No. This is wrong. Thirty years of non-research and constant neglect and abuse causes unnecessary deaths in our population. If patients are given dangerous treatments with fully-informed consent, how can adverse outcomes be characterized as "necessary" or "unnecessary"?

This illness is gonna kill me one way or another, and it looks to be sooner rather than later. I'm not afraid of dangerous treatments. I'm afraid of not being able to get food. I've already been told by the gatekeepers that I don't qualify for help with obtaining the necessities of life.

Death by neglect or death by toxic treatment? That's an easy choice for me.
jimells..i understand. i was exactly where you are and have taken all kinds of toxic drugs. i guess if something seems dangerous even to me, i figure it must be pretty bad....but i totally get where you are coming from.

i guess what i cannot figure out is why anyone would want to take it if the recovery is mostly so short-lived. would one have to take it repeatedly?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I guess that depends on how sick one is. To me, the drug's side effects, with a few exceptions, almost mimic the symptoms of ME/CFS:
  • fever, chills, body aches, flu symptoms, feeling weak or tired;
  • ongoing cold symptoms such as stuffy nose, sneezing, sore throat;
  • headache, earache, painful mouth ulcers, skin sores, warmth or swelling with skin redness;
  • pain or burning when you urinate, urinating less than usual;
  • severe skin rash with blistering, itching, peeling, or pus;
  • weak pulse, fainting, overactive reflexes;
  • muscle weakness, tightness, or contraction; or
  • lower back pain, blood in your urine, numbness or tingly feeling around your mouth.
Other common side effects may include:
  • mild stomach pain, nausea, or diarrhea;
  • muscle or joint pain;
  • back pain; or
  • night sweats.

Why anyone would want to add to their misery is confounding to me. Also, it's my understanding that these few reported remissions are temporary.
I'm going by what Fluge and Mella have reported, and by what Prof Edwards has told us. The listed potential side effects aren't necessarily experienced by all patients and may only be mild.
If the side effects were severe then I think more patients would have dropped out of Fluge and Mella' s studies.
Also, the side effects seem to be tolerable for many rheumatoid arthritis patients, so they can't be too severe for those patients who accept the treatment.

Re the remissions being temporary; some patients have had long term remission, so it's not always the case that remission is short term. Also, Fluge and Mella only carried out a limited study. They were limited in how many follow-up doses they were able to administer. In later studies, they've been investigating follow-up doses to see if longer-term remissions are possible.

It's very early days. I wouldn't experiment with rituximab yet because I'm terrified of my symptoms/illness becoming worse, as has been reported in some cases. But as more information becomes available then we'll be able to make more informed decisions.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
That's just it @dannybex -

So many people, including myself, with this illness are desperate. But...what if you took this and got worse? I mean really worse? What then? I don't know about anyone else, but I really don't want to get any worse and with this med it's a toss of the dice.

As Bob above states, many have gotten worse or didn't respond well. If you aren't responding well to supplements or basic meds and foods, do you think you will respond well to this? This is a BIG GUN medicine. Perhaps, but it's all a guess.

I remember the one woman's response on here...Jackie? Was that her name?

My biggest fear is that it would make me worse. I really couldn't handle that. I was on a biologic and I am sick as a dog now. I am scared and hoping I come out of this. 5 days now, bedbound.

When one goes down like this, they don't see it coming. You go in thinking...this treatment will be okay. Yes, it has the black box warnings. Yes, it could kill me...but you listen to your doctor say, "That is extremely rare" and then you get sick. What do you know!

So, for me that is the problem. Am I worried it would kill me? No. I am worried that it would kill my spirit or take away from me what little health I already have and make it worse. That's what I worry about. I am worried that if the treatment made me worse, I would hate myself for having done something so experimental and then I would want to end my life. Treatments gone wrong have made me want to end my life.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
From a patient's point of view, the Rituximab trials seem kind of back to front: it has not yet been established whether ME is an autoimmune disease, an infectious one or both; Rituximab is contraindicated in the case of some infections; the evidence for it being a autoimmune disease rests, in part, on the fact that some patients respond to Rituximab. I would be interested to know whether Rituximab has been used in any other diseases without a specific target in mind.

Yes, we used it in temporal arteritis on the basis that we thought there might be B cell involvement, although there was no direct evidence. It appeared to induce remission allowing steroid reduction but no formal trial has been done.

It may be worth remembering that steroids were discovered because of the chance finding that pregnant women with RA seemed to improve (just as ME patients seemed to improve with rituximab). Hench decided that they might be improving because of a hormone and guessed it was produced by the adrenal. He was wrong because the relevant hormones were produced by the ovary, but he purified an extract from adrenal that made people with RA much better. He called it substance X and later it turned out to be cortisol. (And gold was found to work in RA because it was used for TB and cholorquine because it was used for malaria and so on.) So finding treatments by mistake has a long and powerful history. In fact back to front is pretty much the norm.
 

deleder2k

Senior Member
Messages
1,129
I guess that depends on how sick one is. To me, the drug's side effects, with a few exceptions, almost mimic the symptoms of ME/CFS:
Why anyone would want to add to their misery is confounding to me. Also, it's my understanding that these few reported remissions are temporary.

And these are the side effects of aspirin:

Side effects of aspirin
Aspirin can cause side effects, although serious reactions are rare.

See your doctor if you are worried or continue to experience any side effects while taking low-dose aspirin.

Common side effects may include:

However, less than 10% of people taking aspirin experience these side effects. If you experience indigestion, try sticking to basic food and taking your aspirin after a meal.

Allergic reaction
In some cases aspirin can cause an allergic reaction, although this is more common in people who have asthma. Go to the nearest hospital's accident and emergency department (A&E) if you experience:

  • swelling of the lips, mouth or throat
  • breathing problems
  • a skin rash which appears quickly
Uncommon or rare side effects
Other, rarer side effects of aspirin may include:

  • a runny nose
  • headache
  • ringing in the ears (tinnitus)
  • vertigo
  • a raised, itchy rash on the skin (hives)
  • nausea or vomiting
  • worsening of asthma caused by narrowing of airways
  • inflammation (swelling) of the stomach
  • bleeding in the stomach
  • bruising
In extremely rare cases, a possible side effect of taking low-dose aspirin is haemorrhagic stroke (bleeding in the brain).

My point is that just looking at the side effects doesn't give you much information about the real side effects from the drug. Haukeland University hospital have treated about 30+ patients with Rituximab, and they have not discovered any serious side effects.

The data we have so far is that 2/3 are classified as major responders, i.e many return back to full-time work, are able to engage in sports, able to work, able to travel, able to get out of their bed. If I am not wrong, average level of functioning after RTX for major responders is almost 80% (Where 100% is completely healthy). It looks that around 50% relapses after 6 infusions.

We certainly don't have the knowledge of how Rituximab works in PWME yet, but I am having trouble understanding why so many here are so skeptical. It is a drug that have been used for many, many years in conditions which comes nowhere near ME in how it affects life quality. We can only hope that the results will be just as good when the Phase 3 study is published in 2017/2018.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I guess that depends on how sick one is. To me, the drug's side effects, with a few exceptions, almost mimic the symptoms of ME/CFS:
  • fever, chills, body aches, flu symptoms, feeling weak or tired;
  • ongoing cold symptoms such as stuffy nose, sneezing, sore throat;
  • headache, earache, painful mouth ulcers, skin sores, warmth or swelling with skin redness;
  • pain or burning when you urinate, urinating less than usual;
  • severe skin rash with blistering, itching, peeling, or pus;
  • weak pulse, fainting, overactive reflexes;
  • muscle weakness, tightness, or contraction; or
  • lower back pain, blood in your urine, numbness or tingly feeling around your mouth.
Other common side effects may include:
  • mild stomach pain, nausea, or diarrhea;
  • muscle or joint pain;
  • back pain; or
  • night sweats.

Why anyone would want to add to their misery is confounding to me. Also, it's my understanding that these few reported remissions are temporary.

I am interested to know where that list comes from. It bears no relation whatever to the side effects of rituximab! Maybe it comes from a site written by someone who is not too keen on the idea of using the drug? One irony of this is that the company Genentech, has put out rather scary webpages that I suspect are designed to put off people who do not have cancer because genentech don't want any law suits. The cancer patients do not sue I guess.

For most patients rituximab has no side effects. The ones that worry me are pneumonitis, which may be quite common but usually resolves on its own, and PML, which may have something like a 1 in 10,000 or 1 in 100,000 increased risk just from rituximab. (Note that a lot of pain killers cause death from gut bleeding much more often than that. Hip replacement kills far more people - maybe 1 in 200.) These are very real concerns, but I had no qualms using rituximab for people whose lives were a misery because of illness.

As someone has already pointed out rituximab is not 'chemo'. Chemotherapy just means drug therapy - as opposed to surgery or radiotherapy. The fact that the word is popularly associated with cancer drugs is a red herring.

I would not encourage PWME to go out and get rituximab just at present. On the other hand if I had ME I might arrange to have it!
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Not scared at all, if I died from Rituxan side effects then obviously someone really wants me off this earth lol:)
 

Sidereal

Senior Member
Messages
4,856
I've had times in the past when I thought things couldn't get any worse and toxic drugs were worth the risk but in the end all drugs I ever took (ironically, very few overall) made me worse. With this illness, there always exists the potential to sink to previously unimaginable depths of illness. I don't think even mild or moderate ME patients can comprehend the special hell of severe/very severe ME. I think that at present, in the absence of solid prognostic factors for a good response to rituximab, it's too risky (as evidenced by experiences of German patients) but in the future if the pathophysiological mechanisms are elucidated a bit more I think it's worth considering.

Perhaps my view is skewed by the fact that I've been at this for 20+ years so the gung-ho attitude of my earlier years is long gone. In the first few years of being sick with this freakshow it seems impossible/intolerable to comprehend or imagine a future in which every day looks like this for decades so I think people naturally think the best approach is to do whatever it takes to get better but I think the experience of many long-term patients has been that many "treatments" make things worse ultimately. Sometimes preserving what little functionality is left is a better approach than taking huge risks. In ME, a gamble can result in things like severe intractable pain 24/7 and inability to assume even a sitting position for more than a few minutes. Continuing for months or years.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@deleder2k - i think it's good to be skeptical and go over all options. I have been one of the sick ones and have tried a lot of things that have made me sicker...why shouldn't one be skeptical?

Everyone has that right. BTW, RA and rheumatic diseases really do impact quality of life. Constant surgeries, excruciating pain, fatigue, loss of marriages, etc. CFS/ME is horrible, but so are many other diseases. RA is a horrible disease that can also make people unable to work and put them in wheelchairs. Just something to observe. I know a few of these people. They are broke and having joint replacements on a regular basis. Not a good time either. Neither illness is a party.