Anakinra (Kineret) - a new immune modulator against ME?

[redo]

The drug Rituximab is among other things used against rheumatoid arthritis. The rheumatoid arthritis drug Anakinra has been suggested against ME, although I haven't found it mentioned by any patients on these forums. My last symptom flare, which I am struggling with now, was accompanied with moderate to strong rheumatic like pain in the joints on both hands. That, and a lot of other symptoms like more brain fog, more vision problems, more of most things, flared up. So, I am thinking perhaps it would help. Have anyone here direct experiences with anakinra (kineret) yourselves?

 

[redo]

I found the numbers in this article rather fascinating. Drugs such as Rituximab gross around 5 billions a year. If we say each cancer/RA patient uses RTX for ten grand each, than the numbers show that there are 500,000 whom get RTX yearly. In both B cell cancer and RA there's probably a higher prevalence of PWME. Let's say just 0,4% of them had ME prior to the cancer, or concurrent with the RA. That would mean that every year, 2000 patients with ME have been getting Rituximab. Two thousand yearly. And when one of them just happened to be a ME patient at Mella/Fluge's departement, they said to themselves "Hmmm, we ought to investigate what's behind this drastic improvement". Co-incidence that it got know.

So, if (over) 2000 ME patients have got the drug in other situations, and the news that it helps recently broke, what than about other RA drugs? What about other immune modulating drugs, which works for syndromes much like ME?

How could we know that other RA / MS drugs quenching the inflammatory/autoimmunity in those groups wont work for us as well?

I really think we've got a sea of opportunities here! I call for more pilot studies on other immune modulating drugs. Preferably those which have shown efficacy against MS or RA. Small pilot studies.

 

[heapsreal]

Wasnt there also talk of methotrexate as well for cfs?? Not sure how this specifically works for cfs though as it inhibits folic acid metabolism. Theres alot of interesting stuff going on.

cheers!!

 

[redo]

Yes, it was. Mella/Fluge brought it up, as they assumed that could be what was behind the great symptom relief (their very first patient got both MTX and RTX). They didn't see much of that in the study of three patients, but the group is so small, we can't rule out that it could have a good effect. It might.

 

[liquid sky]

I can't remember, was IL-1 one of the cytokines found elevated by Judy in patients with possible retroviral involvement? That might give us a clue whether it would be worth a try or not in ME.

 

[redo]

Some studies say it is elevated, others say it's not. The Mikovits study says a subgroup of IL1 is elevated. And other studies, says they are not elevated. But the drugs can also have a tremendous effect on other interleukins by bringing down one, which normally would help facilitate the production of another (IL-1 and IL-6 are just one example of interleukins which may interact that way). I think that there would be individual response rates no matter which immune modulating drug is chosen, because there are slightly different cytokine expressions and also different symptoms in the patient group. I think that immune modulating drugs would generally have a better chance of working in patients struggling with inflammation as part of the disease.

 

[heapsreal]

IL6 is the cytokine mostly noticeably found that interferes with sleep through its inflammatory effects, so i want a drugs to fix that!!

Cheers!!!

 

[Tristen]

The drug Rituximab is among other things used against rheumatoid arthritis. The rheumatoid arthritis drug Anakinra has been suggested against ME, although I haven't found it mentioned by any patients on these forums. My last symptom flare, which I am struggling with now, was accompanied with moderate to strong rheumatic like pain in the joints on both hands. That, and a lot of other symptoms like more brain fog, more vision problems, more of most things, flared up. So, I am thinking perhaps it would help. Have anyone here direct experiences with anakinra (kineret) yourselves?

This last year I've begun having rheumatic type symptoms (not FM) with my me/cfs flares and PEM. And conversely, I've also discovered that relieving the rheumatic symptoms with anti-inflammatories, relieves some of my me/cfs symptoms. It even allows expansion of my stress/exertion capacity. It's obvious that a significant amount of my symptoms are due to brain inflammation. It also seems there is an autoimmune component. These symptoms and responses are new.

Thanks for the info on Kineret. I'm currently searching for the right anti-inflammtory but can't take the usual's like steroids or NSAIDS. Natural stuff just doesn't get it. But I'm also concerned that squelching the inflammation may not be a good thing, even though it brings so much relief. Sure the inflammation is overkill, but it's occurring for a reason. Still, my recent experience has me focusing this direction.

There was a novel out sometime last year written by a woman who had recovered from me/cfs on Methyltrexate. Sorry don't recall the title, but Cort had a front page piece on it.

My most commonly elevated cytokines are IL1b, IL6&8, and TNFb. Of course the RNaseL and Elastace are elevated, and the NK cell function stays dangerously low between 1-4.