Methotrexate (oral drug similar to Rituximab)

Jenny · Oct 25, 2011

In their original study with 3 patients, the Norwegian cancer doctors used Methotrexate on at least one, with some benefits. It seems that other ME patients have used this drug too, and it's commonly used to treat rheumatoid arthritis as well as other auto-immune diseases.

See links below. In the second, the person recovered after 40 years of ME after being treated with an anti-viral and Methotrexate.

http://forums.phoenixrising.me/archive/index.php/t-6111.html

http://mysite.verizon.net/vze16suma/id10.html

Perhaps there are others amongst us who have been given this drug for other conditions. Does anyone have any experience? Did your ME improve?

It might be easier for us to persuade a doctor to put us on this if we wanted to try this sort of treatment before the results of further trials are out, given that it's an oral drug.

(The Norwegians did seem to imply it may not be as effective as Rituximab though.)

Jenny

Tristen · Oct 25, 2011

Jenny said:
In their original study with 3 patients, the Norwegian cancer doctors used Methotrexate on at least one, with some benefits. It seems that other ME patients have used this drug too, and it's commonly used to treat rheumatoid arthritis as well as other auto-immune diseases.

See links below. In the second, the person recovered after 40 years of ME after being treated with an anti-viral and Methotrexate.

http://forums.phoenixrising.me/archive/index.php/t-6111.html

http://mysite.verizon.net/vze16suma/id10.html

Perhaps there are others amongst us who have been given this drug for other conditions. Does anyone have any experience? Did your ME improve?

It might be easier for us to persuade a doctor to put us on this if we wanted to try this sort of treatment before the results of further trials are out, given that it's an oral drug.

(The Norwegians did seem to imply it may not be as effective as Rituximab though.)

Jenny

I've heard of it helping ME. Some dramatically. My concern would be the drugs immune suppression encouraging pathogen reactivation and replication.

The best drug I've ever taken for my symptoms was Prednisone. But can't stay on that one either.

currer · Oct 25, 2011

Methotrexate has been successfully used for Rheumatoid Arthritis for twenty three years.

Rituximab was approved in 1997.

If only proper medical research had been allowed to take place on ME.

redo · Oct 25, 2011

Good suggestion Jenny.

Tristen said:
I've heard of it helping ME. Some dramatically. My concern would be the drugs immune suppression encouraging pathogen reactivation and replication.

The best drug I've ever taken for my symptoms was Prednisone. But can't stay on that one either.

What calms me about the safety profile is that it's been used by so many RA sufferers, that there's bound to be many misdiagnosed patients among them who really have ME with a dominance rheumatic symptoms. So if it where to be terrible for ME patients, there would be many case results showing it. They did use the drug in Norway, and the patients didn't deterioate from that (but it was only a group of three, so it's not much data...).

Tristen · Oct 25, 2011

redo said:
Good suggestion Jenny.

What calms me about the safety profile is that it's been used by so many RA sufferers, that there's bound to be many misdiagnosed patients among them who really have ME with a dominance rheumatic symptoms. So if it where to be terrible for ME patients, there would be many case results showing it. They did use the drug in Norway, and the patients didn't deterioate from that (but it was only a group of three, so it's not much data...).

Sort of the other way around, I know a couple people who have severe RA, but never have me/cfs symptoms....until they crash from overexertion. Then they are full on sick just like me. So for some, there is an overlap. I've been talking with these people recently about their experiences with these drugs. To be continued.

Adster · Oct 25, 2011

When I told my GP that my ME symptoms go into remission when I contract a common 'head cold', he suggested a trial of Methotrexate. I wasn't willing to risk it at the time, it seems like a pretty high risk drug. Given that b12 and folates help me, the idea of taking an antifolate drug like Methotrexate seems like a bad idea.

redo · Oct 25, 2011

I'd love to hear more about those experiences once you know more. Just to note, my writings wasn't meant to cast doubt on how you wrote it had helped some ME sufferers :Retro smile:. It was meant like, it's on label for RA, thousands using it, we'd most likely (although not surely) heard about it if it was really hazardous for ME sufferes.

redo · Oct 25, 2011

Adster said:
When I told my GP that my ME symptoms go into remission when I contract a common 'head cold', he suggested a trial of Methotrexate. I wasn't willing to risk it at the time, it seems like a pretty high risk drug. Given that b12 and folates help me, the idea of taking an antifolate drug like Methotrexate seems like a bad idea.

That's so fascinating. I've read it from various peolpe (the getting better with head colds thing), and it happens to me to. I'll add my thoughts to it later in the "It's all in the gut" thread. I am really thinking what happens with the head cold is that our immune system mobilizes differenly, and thus many symptoms improve. It could be the system stopping some of the autoimmunity, it could be the immune system mounting a antiviral response against the head cold virus (as most colds are viruses) and thereby getting better protection against other viruses (such as HGRV). If anyone's got their two cents here, please weigh in!

Adster · Oct 25, 2011

redo said:
That's so fascinating. I've read it from various peolpe (the getting better with head colds thing)...

It is really interesting. I agree that it's either that ME is autoimmune and the head cold gives the immune system a different task for a bit, or that it's a stealth virus that isn't triggering the immune system that is similar to the cold virus. Potentially then the stealth virus is also taken out by the immune response. For me it's quite dramatic, and it gives me hope that I might not be permanently damaged! I should just recruit sick people to sneeze on me regularly. Maybe that's not as stupid as it sounds.....

Jenny · Oct 26, 2011

I don't get proper colds these days, but when I wasn't quite so ill as I am now I always felt great when I had a cold. The best time was the day before coming down with one. I wonder what that implies.........

Jenny

redo · Oct 26, 2011

Adster said:
It is really interesting. I agree that it's either that ME is autoimmune and the head cold gives the immune system a different task for a bit, or that it's a stealth virus that isn't triggering the immune system that is similar to the cold virus. Potentially then the stealth virus is also taken out by the immune response.

Hey, what stealth virus are you talking about? :Retro smile: I am not following you there.

Adster said:
For me it's quite dramatic, and it gives me hope that I might not be permanently damaged!

Yes! Very important to note!

Tristen · Oct 26, 2011

Adster said:
It is really interesting. I agree that it's either that ME is autoimmune and the head cold gives the immune system a different task for a bit, or that it's a stealth virus that isn't triggering the immune system that is similar to the cold virus. Potentially then the stealth virus is also taken out by the immune response. For me it's quite dramatic, and it gives me hope that I might not be permanently damaged! I should just recruit sick people to sneeze on me regularly. Maybe that's not as stupid as it sounds.....

Lol, go in for your weekly head cold. I recall talk of remission with some people catching poison oak. Interesting and thought provoking, but no thanks.

I know what you mean about those little windows of wellness showing us recovery is possible.

Tristen · Oct 26, 2011

redo said:
I'd love to hear more about those experiences once you know more. Just to note, my writings wasn't meant to cast doubt on how you wrote it had helped some ME sufferers :Retro smile:. It was meant like, it's on label for RA, thousands using it, we'd most likely (although not surely) heard about it if it was really hazardous for ME sufferes.

Agreed, and I've been on this search for the right immune suppressant for some time now. Maybe these drugs are not that great a threat for PwME (like the author of that recent CFS book who recovered on methyltrexate), but it sure seems dangerous for people with so many infections. Maybe killing off the B cells is safer than just suppressing them in this regard. Lots of cool new discoveries.

baccarat · Oct 26, 2011

Jenny said:
In their original study with 3 patients, the Norwegian cancer doctors used Methotrexate on at least one, with some benefits.

Is it a typo or was it really 3 patients?
How can anybody extrapolate any reasonable or serious conclusions from a "study" on three patients?
Apart from that, I don't know this thing at all but I guess (from the reference to RA) that it must be something that down regulates the immune system. If that was the case I'd steer well clear of it, as it may have negative longer-term implications in cases of underlying viral infections for instance.

bertiedog · Oct 26, 2011

Adster said:
It is really interesting. I agree that it's either that ME is autoimmune and the head cold gives the immune system a different task for a bit, or that it's a stealth virus that isn't triggering the immune system that is similar to the cold virus. Potentially then the stealth virus is also taken out by the immune response. For me it's quite dramatic, and it gives me hope that I might not be permanently damaged! I should just recruit sick people to sneeze on me regularly. Maybe that's not as stupid as it sounds.....

For me its the opposite. I never get a cold as such just the virus makes me very ill and brings back all my ME symptoms. Usually the virus goes to my throat and causes an infection for which I need antibiotics. These viruses put me right back every time.

This could be because I take Prednisolone for adrenals that don't function and also I have Autoimmune Thyroid disease.

Pam

aiden424 · Oct 26, 2011

I get way, way worse when I get exposed to, or get a virus. It sets me back for weeks sometimes months!! My two biggest triggers are exercise and viruses.

Kathy

Tristen · Oct 26, 2011

aiden424 said:
I get way, way worse when I get exposed to, or get a virus. It sets me back for weeks sometimes months!! My two biggest triggers are exercise and viruses.

Kathy

Same for me. Over exertion/stress, infections, and heat, are my offenders. I see me/cfs offices, gatherings, etc with signs about not wearing perfumes due to sensitivities. I feel they need to state the same about infections. The common cold will lay me out for months even though I shook it off the first week. Contrary to my pre-illness nature, I've become quite the germaphobe.

Jenny · Oct 26, 2011

baccarat said:
Is it a typo or was it really 3 patients?
How can anybody extrapolate any reasonable or serious conclusions from a "study" on three patients?
Apart from that, I don't know this thing at all but I guess (from the reference to RA) that it must be something that down regulates the immune system. If that was the case I'd steer well clear of it, as it may have negative longer-term implications in cases of underlying viral infections for instance.

Their original study, published a year or so ago had just 3 patients. Their most recent study, published last week had 30 (15 in treatment group, 15 in control group). 10 of the treatment group showed significant improvements.

I was referring to the original study as that was where I saw the reference to methotrexate. I haven't checked to see if they talk about it in last week's paper.

Jenny

Adster · Oct 26, 2011

redo said:
Hey, what stealth virus are you talking about? :Retro smile: I am not following you there.

I don't know how legit the whole "stealth virus" thing is, it just seemed to fit my experiences http://www.emergingworlds.com/ch_viruses_detail.cfm?vPageid=98 The guy who was working on them is no longer licensed apparently so it's probably a whole lot of baseless theorising http://www.emergingworlds.com/ch_viruses_detail.cfm?vPageid=98

Snow Leopard · Oct 26, 2011

It is misleading to say that Methotrexate is similar to Rituximab. The main similarity is merely that they are both prescribed for RA.
Rituximab is a synthetic monoclonal antibody specific to CD20 receptors, that basically sensitises the immune system to destroy B-Cells that express the CD20 receptor (most B-Cells).
Methotrexate on the other hand inhibits tetrahydrofolate synthesis (via inhibiting dihydrofolate reductase). Tetrahydrofolate is an essential nutrient though, so this tends to inhibit the rapid division of cells (eg useful as a chemotherapy agent) as well as suppressing the immune system. But since it targets a fairly non-specific metabolic mechanism, it will necessarily have side effects.

If you ever take Methotrexate, you should supplement with folinic acid as well as methylcobalamin or hydroxocobalamin (active forms of Vitamin B12).

Methotrexate (oral drug similar to Rituximab)

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