Rituximab for severe ME. Should i try?

[NL93]

Hi guys!

I was wondering if anyone could help me make a decision.

I've had ME for 4 years now. It started of with a flu after which I didn't really recover. With increasing difficulty I was able to go to university for 3 months after until I totally crashed. Couldn't walk more than 100 meters, unable to think at all, muscle weakness, circulatory problems(cold feet etc), dizziness. Classic Ramsey ME really

With careful pacing I gradually got a bit better to what you would consider moderate ME. I asked my GP and other doctors several times if I could try rituximab, but no one was willing to prescribe it to me off-label. I do have positive ANA ( 320 )

Then after a period of overdoing it again , I am now severe. Almost totally bedridden, sensitive to light and sound, severe POTS (heart rate 150 upon standing). I can just walk to kitchen and bathroom and can't have visitors for more than a few minutes.

My GP is sympathetic and is now willing to help me get a treatment with rituximab.
I am still considering it, but i am afraid that I am now too severely ill for it to work, or might get even more ill on it. So.. Any thoughts? Or other suggestions?
Thanks

 

[deleder2k]

I would absolutely consider it. Will it be covered financially? It seems that there is lower response rate for very severely effected patients. I do not know if you fit that group or not based on what you wrote here.

To my understanding side effects are usually acceptable. I would definately consider doing it if you feel you have no life.

 

[funkyqueen]

I would absolutely consider it. Will it be covered financially? It seems that there is lower response rate for very severely effected patients. I do not know if you fit that group or not based on what you wrote here.

To my understanding side effects are usually acceptable. I would definately consider doing it if you feel you have no life.

All is said !

Edit : yes, i have something to add,@NL93 :you wrote that you are afraid that you should get more ill as you are now, with Ritux... Let me tell you that , it was my worst fear... so much more afraid by that than death ...but...worst than i was , lol, it was death So... yes, you have to be aware from sides effects of Rtx...it is lotery...you may have , like me , " just" some infections... ...or you risk death.

I remember that it exist a thread in PR,where a lot of us shared their thoughts, about the fact if they can have opportunity to take Rtx, if they'll do it, or not

( for the moment, sides effects risk period is not over and continue years after the end of infusions, and...having Ritux increase risks of cancers ( like all others chemo... but this, no doctor will tell you that, but if you search and read the good readings, you will be aware of that )
No matter, as cancers are the 3rd cause of death in ME patients, so ... .

I'm severe too, and it helped me, ( far of healing me totally, after 6 infusions), but ...in my thoughts, it helped me sufficiently for save my life. Thanks to Ritux, i knowed the first remission period in my ME life.
This decision is yours, you are lucky that your GP want to help you to have it ( but sadly, to my knowledge, no one GP in the world can prescribe it to you, but maybe he can help ?)
Fingers crossed for you !

 

[Marky90]

All is said !

Edit : yes, i have something to add,@NL93 :you wrote that you are afraid that you should get more ill as you are now, with Ritux... Let me tell you that , it was my worst fear... so much more afraid by that than death ...but...worst than i was , lol, it was death So... yes, you have to be aware from sides effects of Rtx...it is lotery...you may have , like me , " just" some infections... ...or you risk death.

I remember that it exist a thread in PR,where a lot of us shared their thoughts, about the fact if they can have opportunity to take Rtx, if they'll do it, or not

( for the moment, sides effects risk period is not over and continue years after the end of infusions, and...having Ritux increase risks of cancers ( like all others chemo... but this, no doctor will tell you that, but if you search and read the good readings, you will be aware of that )
No matter, as cancers are the 3rd cause of death in ME patients, so ... .

I'm severe too, and it helped me, ( far of healing me totally, after 6 infusions), but ...in my thoughts, it helped me sufficiently for save my life. Thanks to Ritux, i knowed the first remission period in my ME life.
This decision is yours, you are lucky that your GP want to help you to have it ( but sadly, to my knowledge, no one GP in the world can prescribe it to you, but maybe he can help ?)
Fingers crossed for you !

A couple of corrections:

1. rituximab is not a chemotheraphy, it is a monoclonal antibody.
2. There is not evidence of people dying due to rtx-treatmen alone, unless they already are old, weak from cancer or other serious diseases, or on multiple immunosuppressive drugs.
3. There is not an increased risk for cancer in RA-patients taking rtx, and so probably not in ME-patients either.

 

[Jonathan Edwards]

A couple of corrections:

1. rituximab is not a chemotheraphy, it is a monoclonal antibody.
2. There is not evidence of people dying due to rtx-treatmen alone, unless they already are old, weak from cancer or other serious diseases, or on multiple immunosuppressive drugs.
3. There is not an increased risk for cancer in RA-patients taking rtx, and so probably not in ME-patients either.

I agree. Where did you find a suggestion that rituximab increases risk of cancer @funkyqueen? Rituximab is not in any way like other chemotherapy drugs so there is no reason to think it would and I doubt it has actually been given for long enough for anyone to know. If it is given for lymphoma the patient is very likely to have had carcinogenic drugs as well so that gives us no evidence.

 

[Jonathan Edwards]

@NL93 It is hard to recommend using rituximab for ME until we have better information but others have made reasonable suggestions here. In the presence of an ANA of 1/320 and severe fatigue I think there would be a case for considering rituximab or belimumab more strongly, since there would be a reasonable argument that the ANA was relevant to the symptoms, whatever diagnostic label is used. However, this is something that needs very careful assessment from an expert and intelligent rheumatologist/immunologist. There are some very good rheumatologists in the Netherlands in University hospitals. I would advise against going to a private clinic unless you are absolutely sure they have a good understanding of the very complicated issues around rituximab treatment.

 

[MEMum]

From memory, not that reliable, @Rebecca2z has a thread on her improvement with Rituximab. She was very severe and had had ME for a very long time. I'll try and locate the thread when I have time.
My daughter has ANAs and another autoantibody, we are considering rituximab as a possibility.

 

[funkyqueen]

A couple of corrections:

1. rituximab is not a chemotheraphy, it is a monoclonal antibody.
2. There is not evidence of people dying due to rtx-treatmen alone, unless they already are old, weak from cancer or other serious diseases, or on multiple immunosuppressive drugs.
3. There is not an increased risk for cancer in RA-patients taking rtx, and so probably not in ME-patients either.

I'm sorry but i'm not agree with you on that, @Marky90 :

1- Yes, if you want to play with words, certainly, Rituximab is a B cells depletor, and it is customary to say that this is an immunosuppressant/immunomodulator, more than chemo, which is true . But from the moment Ritux rest (one of) the main indications for some lymphomas, and although one can still say this is chemo. Certainly not as hard on the body than a CHOP, but as I received 6 infusions , it is not chocolate either. So in my view, we can say that Rtx is a form of chemo, it's not totally wrong, isn't it ?

2- there are some, yes, I read it.

3- Ritux increases the risk to cancers, like all the chemos, and some immunosuppressants, or even medication that will shake up your immunity / change the ratio "immune cells anti-cancer VS others immune cells" .
So you'll probably ask me to give you links that attest it, but I must have thousands of registered links (and misplaced) in my PC, so I will not use my cognitive looking for them, i'm sure you understand that.. I invite you to search the REAL numbers, on consequences / risks of medicines: NOT those whose studies were financed by the laboratories who sell these chemo, (these are those papers , you probably read). .. Doing this,you will find some gentle numbers, like 7 to 8 % below from reality ( for the comparison i can made) ..I remember that chemo (and I'm speaking now about chemotherapy with multiple agents), would be responsible of ...30% of cancer recurrence, on average. Just ask an honest oncologist if it is not true. Really ... it was by reading the reports of Doctors and especially reading Doctors thesis, on differents diseases/uses of Ritux, I started to have the real numbers. Doctors have the real numbers. I do not know how to access (or even if it is possible for a simple patient to access at the numbers of reported cases of iatrogenic effects at various government agencies), but the doctors who wrote these papers, they, have them, and I was able to read them

 

[Jonathan Edwards]

Dear @funkyqueen,
I think Marky90 is right.
Chemotherapy just means drug therapy rather than surgery. It has come to mean non-specific cytotoxic therapy amongst patients but rituximab is not of that class. And the increase in cancer seen with some chemotherapy drugs is not a general effect of all of them. Cyclophosphamide causes bladder cancer but aziothioprine causes skin cancer.

I think it is important if we are trying to help people with advice on drugs to make sure what we say is correct and provide the source if there is uncertainy. I probably have more experience with rituximab in non-cancer conditions than any other doctor worldwide and I have not heard of any evidence of causing cancer. The real numbers in my series showed no evidence of a link. I may be out of date but if I am I would like to know.

 

[jimells]

Then after a period of overdoing it again , I am now severe. Almost totally bedridden, sensitive to light and sound, severe POTS (heart rate 150 upon standing). I can just walk to kitchen and bathroom and can't have visitors for more than a few minutes.

Your illness severity and symptoms sound similar to mine. If I had access to Rituximab treatment from a competent physician experienced with this drug, I would sign up in a New York minute. For me, two out of three ANA tests were positive.

I would like to get tested for the adrenergic receptor antibodies, but I don't know if they are available/reliable outside of research labs, and even if they are, no doctor I know would ever order them, since they insist my symptoms are "primarily psychological".

My idea probably has no validity, but I suspect adrenergic antibodies because of the way my adrenergic related symptoms shift over time. For example, last fall I had frequent episodes of tachycardia & palpitations - the beta 1 receptors, as I understand the literature. After a while this shifted to sudden hot flashes, which could be caused by agonized beta 2 and 3 receptors. Then recently I have had more trouble with cold, clammy hands and feet - the alpha 1 receptors. Of course, when I'm having a bad POTS crash all these receptors are agonized by too much norepinephrine and I can't even tell if I am feeling too hot or too cold, or maybe both.

While waiting for access to a real treatment, I have had some success in treating symptoms with very small doses of beta blockers. I have been able to increase my upright time from 10 minutes at a time to 20-30 minutes, so that is a huge increase. I also had success with small doses of trazadone used as an alpha 1 blocker, but after a few weeks the trazadone caused adverse effects, so I had to abandon that treatment.

 

[SilverbladeTE]

It would be extremely unlikely for such a potent immune effecting drug like rituximab NOT to have increased risk of cancers or infections, sorry, it's ludicrous if it's said to be "Non risky", that is simply impossible.

So if you had hundreds of thousands of M.E. patients with suppressed immune systems if Rituximab was used en masse...eh, no, that is not a good idea.
Hint: look what HIV, syphilis and Tuberculosis cooked up in the stew of poverty and lousy social health care in the USA.

But compared to the risk to life/living of severe M.E. it is certainly worth a gamble with the odds quite in favour of a beneficial effect for individuals to consider.
But the blinkers on this subject I find worrying...no potent drug is "safe". it's always risk vs benefit.

What's really needed with rituximab use in private M.E. patients is good record keeping and presenting this data to M.E. advocacy/experts for collation of the data outside the twisted and corrupt craphouse that is the "official" medical Establishment.
ratios of good vs bad effects, what type of patient is best affected etc, all need huge amounts of data for good basis.

I'm sorry but I do not believe Rituximab is the "anti M.E. silver bullet", it's more like a freaking shotgun!
But it does have very beneficial effects and is worth using for some, and eventually when more is learned of exactly how and why it works and why our B Cells are haywire, a more specific, perhaps permanent treatment can be discovered.

a way of looking at is with diabetes: insulin was needed to keep many patients alive, but it did nothing to treat the underlying cause. And over time, insulin injections, especially earlier animal versions, caused serious harm.

We all should know by now, our illness reacts to stressors, and it can be a downward spiral with this.
To much distress and it gets worse and worse, a feedback effect...Rituximab can at the very least break that cycle, and give some breathing space.

 

[Valentijn]

Ritux increases the risk to cancers, like all the chemos ....

Do you have a link to any research showing that? Thousands aren't necessary, but one or two reputable studies would be a good start.

 

[Jonathan Edwards]

It would be extremely unlikely for such a potent immune effecting drug like rituximab NOT to have increased risk of cancers or infections, sorry, it's ludicrous if it's said to be "Non risky", that is simply impossible.

So if you had hundreds of thousands of M.E. patients with suppressed immune systems if Rituximab was used en masse...eh, no, that is not a good idea.
Hint: look what HIV, syphilis and Tuberculosis cooked up in the stew of poverty and lousy social health care in the USA.

But compared to the risk to life/living of severe M.E. it is certainly worth a gamble with the odds quite in favour of a beneficial effect for individuals to consider.
But the blinkers on this subject I find worrying...no potent drug is "safe". it's always risk vs benefit.

What's really needed with rituximab use in private M.E. patients is good record keeping and presenting this data to M.E. advocacy/experts for collation of the data outside the twisted and corrupt craphouse that is the "official" medical Establishment.
ratios of good vs bad effects, what type of patient is best affected etc, all need huge amounts of data for good basis.

I'm sorry but I do not believe Rituximab is the "anti M.E. silver bullet", it's more like a freaking shotgun!
But it does have very beneficial effects and is worth using for some, and eventually when more is learned of exactly how and why it works and why our B Cells are haywire, a more specific, perhaps permanent treatment can be discovered.

a way of looking at is with diabetes: insulin was needed to keep many patients alive, but it did nothing to treat the underlying cause. And over time, insulin injections, especially earlier animal versions, caused serious harm.

We all should know by now, our illness reacts to stressors, and it can be a downward spiral with this.
To much distress and it gets worse and worse, a feedback effect...Rituximab can at the very least break that cycle, and give some breathing space.

Nobody has blinkers on about the safety of rituximab. It has known serious side effects of which the one I have seen most of is pneumonitis. There is also a small but known increased risk of infection. However, there is no theoretical reason or evidence for an increased risk of malignancy that I know of. There is little or no evidence for antibodies protecting us against cancer - if there is immunity it is T cell mediated as far as we know.

I can't quite see what HIV, TB and syphilis have got to do with a drug side effects?

You are not going to get effective record keeping in the private sector - it never happened with rituximab for all sorts of other conditions so it won't for ME. I personally think we are more likely to get data from the current craphouse that was me having devised the use of rituximab for autoimmunity in the first place and Drs Fluge and Mella doing a carefully designed ME trial. It is nice to think that PWME consider me twisted and corrupt.

And in fact we do not have evidence that rituximab has very beneficial effects in ME. So far we merely have a suggestion that it might from the phase 2 trial.

I think it is useful to discuss these options but it would be nice for there to be some basis for what some people are saying!!!

 

[ScottTriGuy]

I have had some success in treating symptoms with very small doses of beta blockers. I have been able to increase my upright time from 10 minutes at a time to 20-30 minutes,

Are you hypermobile?

Beta blockers seems to help folks with 'weak' collagen...

http://www.scientificamerican.com/a...double-jointed-are-more-likely-to-be-anxious/

 

[Aurator]

I've not heard of a cancer risk and I wouldn't be too worried about taking Rituximab, as long as it was administered responsibly.

There's the rub, I suppose. I could be wrong but I thought Fluge and Mella were still undecided on things like optimal dosage and intervals at which it should be administered, so presumably it's fair to say even they themselves aren't certain at this stage how best to use Rituximab in cases of ME. I thought they weren't certain either which types of patients are likely to be responders and which aren't (assuming there are any genuine responders ultimately in this phase 3 trial and it doesn't give a very different outcome from the first two, i.e. a disappointing one). I thought answers to these sorts of questions were what Fluge and Mella and thousands of ME patients were waiting to find out.

Personally, I'm very sceptical whether anyone out there apart from Fluge, Mella and Edwards have the necessary familiarity with Rituximab at this stage to go giving it to ME patients, so I would be pretty cautious for now about approaching any private lab selling Rituximab treatment for ME/CFS. There's also the considerable cost to bear in mind.

 

[BurnA]

I thought they weren't certain either which types of patients are likely to be responders and which aren't (assuming there are any genuine responders ultimately in this phase 3 trial and it doesn't give a very different outcome from the first two, i.e. a disappointing one). I thought answers to these sorts of questions were what Fluge and Mella and thousands of ME patients were waiting to find out.

Yes we are all waiting for these questions to be answered.
How long does one wait though ?

 

[NL93]

To be honest, I am not really that afraid of getting cancer, the ME getting worse horrifies me way more . I did read a few stories of people with ME relapsing on rituximab. It is just such a hard decision to make. I really want to get better, and I would do anything to achieve it.

Problem is, I just don't know what exactly is going wrong in my body and I also feel like I shouldn't be trying drugs just for the sake of doing something.

Anyways, thanks a lot for the responses! I appreciate it a lot

 

[daisybell]

It's very hard waiting for the results of the trial especially when your health is still deteriorating. Perhaps it's unwise, but I've pinned my hopes on rituximab. I want to make sure that when I do get it, I have the best chance of it working. I'm not currently bed bound, but nearly completely housebound, and I'm still deteriorating - so I just hope that by the time the right drugs are found, I'm not too severe to get them.....

 

[jimells]

Are you hypermobile?

No, I seriously doubt it. In fact I am unable to completely extend my elbows, due to a bicycle mishap about 40 years ago. Fortunately I landed on my palms, with elbows taking the shock of landing, instead of my face!

The article you linked to is interesting, but I object to their framing this as some kind of psychological problem.

This pooling [of blood in leg veins] may lead to exaggerated cardiovascular responses to maintain the output of blood from the heart. When the heart has to work extra hard just to circulate blood, it brings the entire body to the verge of a fight-or-flight reaction, requiring very little to set off panic.

From my understanding of hyperadrenergic POTS (that is the type of POTS they seem to be discussing) it would be more precise and useful to say that hypoperfusion triggers the release of epinephrine and especially norepinephrine in order to increase heart rate and stroke volume. These two catecholamines also cause other symptoms that patients may experience as anxiety or even a panic attack. That's only a little different from what was actually written, but doesn't imply the involvement of mental illness.

It's also not correct to state that the heart somehow "brings the entire body to the verge of a fight-or-flight reaction", since it is the release of catecholamines that causes both increased cardiovascular response and the feelings of anxiety.

Instead of saying "People who are double-jointed are more likely to be anxious", how about "People who are double-jointed are more likely to have POTS - which can be diagnosed as anxiety". But then the article would have to explain POTS, and I guess that would be way too much work, and maybe that would disqualify the article for publication in a magazine called "Mind".

In the meantime, the findings are an important reminder for clinicians to consider the possibility that a patient's mental disorder could have purely physical origins.

At first glance I thought this was an OK conclusion, but this is actually completely backwards, because people with EDS and POTS don't have a "mental disorder" - they have EDS and POTS, and they need EDS and POTS treatments, not anxiety and panic disorder treatments.

Despite the name of the publication, the article doesn't seem very scientific to me, since it doesn't have any references.

This seems to be the original journal article.

 

[morse27]

I'm sorry but i'm not agree with you on that, @Marky90 :

1- Yes, if you want to play with words, certainly, Rituximab is a B cells depletor, and it is customary to say that this is an immunosuppressant/immunomodulator, more than chemo, which is true . But from the moment Ritux rest (one of) the main indications for some lymphomas, and although one can still say this is chemo. Certainly not as hard on the body than a CHOP, but as I received 6 infusions , it is not chocolate either. So in my view, we can say that Rtx is a form of chemo, it's not totally wrong, isn't it ?

2- there are some, yes, I read it.

3- Ritux increases the risk to cancers, like all the chemos, and some immunosuppressants, or even medication that will shake up your immunity / change the ratio "immune cells anti-cancer VS others immune cells" .
So you'll probably ask me to give you links that attest it, but I must have thousands of registered links (and misplaced) in my PC, so I will not use my cognitive looking for them, i'm sure you understand that.. I invite you to search the REAL numbers, on consequences / risks of medicines: NOT those whose studies were financed by the laboratories who sell these chemo, (these are those papers , you probably read). .. Doing this,you will find some gentle numbers, like 7 to 8 % below from reality ( for the comparison i can made) ..I remember that chemo (and I'm speaking now about chemotherapy with multiple agents), would be responsible of ...30% of cancer recurrence, on average. Just ask an honest oncologist if it is not true. Really ... it was by reading the reports of Doctors and especially reading Doctors thesis, on differents diseases/uses of Ritux, I started to have the real numbers. Doctors have the real numbers. I do not know how to access (or even if it is possible for a simple patient to access at the numbers of reported cases of iatrogenic effects at various government agencies), but the doctors who wrote these papers, they, have them, and I was able to read them

I am under treatment with Rituxan since December 2014 and I received 6 doses of 1 gram, not for ME / CFS but for GULF WAR SYNDROM after immunization with adjuvant squalene with Pandemrix GSK. I have serious side effects for two months and I do not know if I would still be living in three months! . Although rituximab enters the term bio-therapies, it remains as harmful to the immune system that given any chemotherapy for cancer. I warn that some of us in a variable time develop severe diseases: autoimmune or cancer. Medical information is available on the web