Methotrexate (oral drug similar to Rituximab)

[baccarat]

I also have a problem with "viruses" that set me back, but recently I started to think it may not be viruses I pick up. It's more likely something that got into me from the beginning and it comes out to reproduce when conditions are right. Yes a cold can trigger that, as others I get over it but don't feel alright for sometime. I think the cold weakens my defenses allowing the "other thing" come out taking advantage of my weakness.
I'm now looking into worms and parasite, rather than viruses, as I've noticed that symptoms are sometimes worse between the new and the full moon, which some say to be typical of parasites, but that could just be a coincidence.


Jenny,
if it's 30 patients then it can certainly give some good indications, but still remain unconvinced regarding possible long-term effects in respect of stealth infections.

 

[Adster]

.... 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. ...

And it should be noted that there is concern that folic acid fortification in foods and/or supplementation may be a risk to those with existing undiagnosed cancers.

 

[Jenny]

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).

Thanks for pointing this out Snow. I was meaning it was similar in that according to the Norwegian doctors it also depletes B cells.

Jenny

 

[undcvr]

Actually if you read up on Methotrexate you will find that one of its modes of actions is B cell depletion. Except that Methotrexate is what they call in the pharmaceutical industry a 'sloppy' drug. It does not do its job as specifically as Rituximab does and Methorexate and ends up with a whole bunch of side effects. In a worse case scenario at high doses it can target all fast growing cells not just cancer cells and it can make our hair and nails fall off. But the dose that is being used for RA is much less that the dose used for cancer, about 1/10th if I am not mistaken and before Rituximab came along Methotrexate has been used successfully for many many years.

One thing I find so interesting about Methotrexate is that its side effects is identical to Valcyte, which tells me that Valcyte works directly as an immunomodulator too. The 2 medicines converge since EBV hides out in B cells and in CFS/ME it is B cells that are defective and produce autoantibodies that attack our own bodies and immune system. It is very interesting that one of Valcyte's posible side effect is leukoprenia and one of the medications to take along with it is folinic or methyl folate. And if you think that Rituximab's high specificity to B cells is an advantage, Rituximab and all other monoclonal antibodies have the ability to kill you outright because it is so effective at its job. From what i read about Rituximab's therapy, once you get those first 2 infusions, they effects last for a year.

I am actually thinking of switching over to Methotrexate to continue my therapy. Tomorrow I see my doctor to see if I can make the switch.

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

I also find this statement rather silly. The reason why we are experiencing all these CFS sypmtoms is that we already have an immune system that is making us weaker. Our immune system is so dysfunctional that we are not able to fight of pathogens that other normal healthy people can.

More likely than not pple with CFS/ME need an immunosuppresant or immunomodulator.

 

[Tristen]

I would say it's silly to not be concerned about the potential for that kind of problem with these drugs. I've been on big gun immune modulators and suppressants for other health issues and yes, I usually get relief of the me/cfs as a nice temporary side effect. But it's only temporary and is usually followed by increased viral reactivation, ensuring another stint in the abyss. No way I'd try Methotrexate before we learn more.

Ideal would be to find a distinct culprit, as with EBV hiding out in the B cells. We need a drug that will selectively put the dragon down, without causing a bigger problem. Obviously more research is needed. I also think subtypes will be an issue with Tx. Well, maybe not subtypes as much as differing variables, such as sets of infections, and addressing ones particular immune dysfunction. We are not all the same in this regard. I will rely on my me/cfs doc for the green light on these kinds of drugs. Meanwhile, at least we have the dragon on the run.

 

[snowathlete]

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.

HERE HERE! It is always on my mind, that if ME/CFS had of been treated differently in the first place, then when i got it three years ago, i would have had a blood test, they would have said "yes, turns out you've got ME. Good news is that there is a treatment for that. In fact of couple have been developed, and we can cure you. You wouldnt believe it, but once upon a time some idiots said it was all in the head. ha ha ha. Well, anyway, here is a prescription."

So i consider everyday of my illness to have been stolen from me by neglect.

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.....

Interesting idea Adster, that maybe its something similar to a cold virus. I keep on hoping for a bout of bird flu, but it hasnt happened yet.
I also think it is reassuring that once the cause of our illness is identified, very good treatment options should be possible, because people with colds or that get pregnant often have such a significant turn around.

 

[xrayspex]

I have been thinking about methotrexate this year. I have had cfs/fm (something weird) for over 20 yrs as well as neck injury so have chronic pain but still able to take walks and work some with lots of pacing.

anyway got diagnosed with sjogrens this year and I feel need to do something, immune modulator or something because getting corneal abrasions and teeth problems even tho I take care of my teeth and eyes, eyedrops mult.daily and floss and brush etc but get cavities and root canals.

I tried LDN for 6 mos few years ago and had some good points but was real tricky at first caused headaches until got dose down to almost homeopathic. i was sort of spacey and moody on it and it didnt treat my worse pain flares so had to go off of it, feel like it depressed me too. too bad because accessible and less harsh.

interestingly 2 of my best friends i lived with from 20 years ago both have some immune dysfunciton that showed up in them in the last couple years. One had RA and is on methotrexate, she hasnt had CFS or MCS like me and is doing great altho that med seemed hard on her the first year she gets a lot more done than me. I forget what my other friend has for autoimmune issue but she is on an immune suppressant.

Since I work parttime I dont see how i can put up with feeling worse for many months trying methotrexate as I am already on edge of functioning, also it would kill me to hang in there longtime with side effects and if it didnt pay off.....ugh Feel I cannot afford any more setbacks of that sort at this juncture.

But if any of you have tried it or close to someone who has please share. One interesting thing I thought of is my b12 runs high right now so maybe the side effect of depleting b from methotrexate would be ok.

I have also had it where i felt better at beginning of a cold. I dont get too many colds per se these days, but I think I get pain flares as my expression of being exposed to others who are sick. Seems like there are the runny nose camp of CFS and the neuro pain camp I am in the latter.