Who tried immunosupressive treatment/drugs?

[DanME]

In the course of the ongoing Rituximab trials in Norway/UK and the following discussion, if ME could be a an autoimmune disease (at least for some), I am really interested, if anybody tried immunosupressive drugs with some success. A couple of month ago, I read a story about a woman, who got a high dose of glucocorticoids related to another disease and had a month long relief of all her symptoms. I ve came across those stories a couple of times now and would like to know, if anybody has personal experiences?

Of course with Rituximab?
With Methotrexate?
With Glucocorticoids like Cortisone or Prednisone?
With some other? (I heard Dr. Montoya uses now Colchicine?)

I hope, such a thread doesn't already exists.

 

[lansbergen]

No cortico's for me.

I use levamisole. It seems to be both an immune suppresor and an immune stimmulator.

 

[Sidereal]

Yes, a rheumatologist gave me a "diagnosis" of undifferentiated connective tissue disease some time ago and put me on methylprednisolone. It caused a bad ME crash which lasted several months.

 

[justy]

I recently had a few weeks of high dose prednisolone for an unrelated condition. My reaction to the drug was not typical. I had horrendous side effects - mainly psychiatric. also complete LOSS of appetite to the point that I couldn't understand why anyone would want to put food in their mouths, paranoia, anxiety, jittery etc.

The inflammation in my respiratory system did not respond as quickly as it should have and this surprised my non M.E GP as well as the side effects (he said he had never heard of anyone losing their appetite on it before). I was told I would probably feel great and have loads of energy. I didn't. I had an awful crash and felt very very ill - no miraculous sense of wellbeing for me.

On the plus side: I know from testing that I have high levels of various types of inflammation and general inflammation definitely decreased. My one lymph node on my neck that has been swollen for 5 years went down completely. No headaches or eye pain. My swollen ankles went down. My severe pain in bum (still waiting to be assessed by hospital) went away completely for the first time in many months. My joints did not hurt so much. Slightly swollen finger joint went down.

All these various swellings and pains have gradually come back since stopping and perhaps some seem worse.

I don't think that most M.E patients responses to drugs etc tend to be typical- we tend to have atypical, complex reactions. My M.E doctor was not happy with me being on steroids as I have bacterial infections, possible Lyme and despite now being ANA positive my TH1 immunity is VERY low. He said I must take them for as short a time as possible, because they would allow the bacterial infections to run riot.

All the best
Justy.

 

[minkeygirl]

I want to try methotrexate. Dr. Dantini treated someone who had CMV with methotrexate and she had great results. I have that and psoriasis. I have to talk to my doc about it Wednesday. @Ninan was going to do methotrexate.

Here's a forum on Rituximab. I know I've read some convos about this before.

http://forums.phoenixrising.me/index.php?forums/rituximab-news-and-research.71/

 

[Jonathan Edwards]

Interesting question - it has given me a thought.

But before that I would caution about talking of 'immunosuppressives'. This is one of those rag bag terms that doctors like because they are too lazy to get to grips with anything complicated like the immune system. PR threads tend to be at a much higher level in my experience. But you are right in terms of raising a ball park issue. Rituximab is not so much an immunosuppressive as a drug that is designed to remove unwanted B cell clones - and nothing else. Methotrexate is problematic because it probably works differently in several diseases. It is interesting that of all the autoimmune diseases the one that most seems to call for 'immunosuppression' is lupus and nobody uses methotrexate in lupus. They do use if for myasthenia to suppress antibody production but I never know if it works - I am not sure whether a conclusive trial has ever been done. Its all a bit muddly. I don't think I would offer methotrexate to someone for ME on scientific grounds but I admit that Oystein Fluge seems to have had patients who improved. And so on...

But my thought was that if there are 6 MEs, as I am thinking, then it would be very likely that some would get short term benefit from steroids and some would get worse. There is some evidence that even within a disease you can get opposite effects. Lupus joint pain improves with steroids but there is some evidence that lupus brain involvement gets worse.

So maybe one way to separate people in to ME subgroups is to try a week of steroid. OK it might produce a crash and that is an issue, but if there was a clear plus or minus distinction between ME type 1,2,and 4 and types 3, 5 and 6 then that could be hugely useful. If all the analyses that don't show anything across the board are done separately on steroid responders and steroid haters then maybe suddenly something would show up. Maybe someone has done this before but I doubt it. And you might even try a month of methotrexate, although I cannot raise much enthusiasm for that as a test.

So much of all this debate seems to me to be about trying to separate the 6 diseases (OK 946 diseases or whatever). And that is what everybody agreed was the main issue at the IiME research colloquium. For instance do those people with ANAs or thyroid antibodies do well on steroid or badly? It may be important what sort of ANA because the 'undifferentiated' ones often do not get benefit from steroid.

Just a thought.

 

[lansbergen]

So maybe one way to separate people in to ME subgroups is to try a week of steroid. OK it might produce a crash and that is an issue, but if there was a clear plus or minus distinction between ME type 1,2,and 4 and types 3, 5 and 6 then that could be hugely useful. If all the analyses that don't show anything across the board are done separately on steroid responders and steroid haters then maybe suddenly something would show up. Maybe someone has done this before but I doubt it..

Was that done with RA and if so did it tell anything?

 

[lansbergen]

I understand in RA there are cortico responders and there are levamisole responders. Anyone ever looked for differences?

 

[ukxmrv]

I've had a good response to prednisolone but it does cause a crash for me afterwards. I didn't get any bad side effects and I even lost weight, my face rather than developing the moon effect, became leaner.

Had forgotten about that.

Also had a good response to Humira and I didn't notice a crash after.

 

[Jonathan Edwards]

Was that done with RA and if so did it tell anything?

In a sense it was. If the diagnosis of RA was clear from signs and tests then of course it was RA. But we did use steroid as a 'diagnostic marker' for people who had some symptoms of RA but the diagnosis was unclear. Such people would routinely get a 'trial of steroid'. If they responded then further treatment with steroid or other drugs used for RA would be made use of on the basis that this 'probably was RA'. Otherwise it was 'probably not RA' and any further use of drugs would be cautious or it would be a question of wait and see. Virtually everyone with RA gets some positive response to steroid, although there are a few exceptions. Levamisole was tried for RA in around 1979 when I was a trainee and there was no real evidence that it worked. It also produced a lot of unwanted effects. I don't think anyone really had much idea what it did other than poison parasites and some strange things to mouse thymus glands.

A trial of steroid is also, of course, a routine was to confirm a diagnosis of polymyalgia rheumatica, where there is no specific diagnostic test.

The situation for ME would clearly be a bit different in the sense of not being 'is it ME or not" but rather 'which sort of ME is this'?

 

[rosie26]

I was given Prednisone in my first severe year of ME and it was so intolerable. I had to stop it after taking only 1x 5mg tablet. I felt so awful and unbearably sped up inside my body. I had to stop it as it would have sent me over the edge.

 

[mellster]

But before that I would caution about talking of 'immunosuppressives'. This is one of those rag bag terms that doctors like because they are too lazy to get to grips with anything complicated like the immune system.

I'd echo that and would be highly skeptical of immunosuppressants, esp. those which are not selective.

 

[lansbergen]

Levamisole was tried for RA in around 1979 when I was a trainee and there was no real evidence that it worked. It also produced a lot of unwanted effects. I don't think anyone really had much idea what it did other than poison parasites and some strange things to mouse thymus glands.

It paralyses the roundworms. It is assumed it has no effect on tapeworms but when I used it in animals for immunemodulating reasons it expeled tapeworms.

I was one of the outside testers before it was put on the market as a dewormer and from then on always used it as a dewormer for animals. That was an advantage when I noticed it helped the animals with the unkown infection.

Levamisole has many effects but the core mechanism is still not known.There is renewed interest and research with analogues and derivates.

The situation for ME would clearly be a bit different in the sense of not being 'is it ME or not" but rather 'which sort of ME is this'?

Understood

 

[Ninan]

I'm trying Methotrexate (MTX), starting on Monday. It seems that most PWME:s don't respond at all to MTX (at least not from the low doses given for RA etc, around 7,5 mg/week) although there are a few cases. Fluge has treated two patients, I think? One was treated for lymphoma and hence given higher doses. She was the one who set Fluge and Mella on the track to B-cell depletion. The other one was given 10 mg of MTX following successful treatment with rituximab. She had none of the b-cells that rituximab eradicates in her peripheral blood at the time. She had effect from MTX for 25 weeks. I haven't heard of them treating anyone else with MTX.

Speaking of steroids: Many of us try Florinef for OI. I get quite a lot of energy from it if I take the maximum dosage, 0,2 mg. (It doesn't seem to have anything to do with the water retention effect that helps with OI. It's a different kind of energy.) It disappears after a week or two and I have to raise the dosage to keep the effect. I've figured that's because my body starts producing less cortisol.

I haven't heard of anyone else here who get that energy effect from it. Still I haven't associated that with ME. Don't most people get energy from steroids?

 

[snowathlete]

I had two tapers of prednisolone this year (for ulcerative colitis) 40mg each time, dropping 5 mg each week.
Did nothing for me positive or negative. When I came off however, I developed acne (a common side effect of steroids) and that is still a problem now several months on. Apart from that though they may as well have been smarties.

 

[DanME]

But my thought was that if there are 6 MEs, as I am thinking, then it would be very likely that some would get short term benefit from steroids and some would get worse. There is some evidence that even within a disease you can get opposite effects. Lupus joint pain improves with steroids but there is some evidence that lupus brain involvement gets worse.

So maybe one way to separate people in to ME subgroups is to try a week of steroid. OK it might produce a crash and that is an issue, but if there was a clear plus or minus distinction between ME type 1,2,and 4 and types 3, 5 and 6 then that could be hugely useful. If all the analyses that don't show anything across the board are done separately on steroid responders and steroid haters then maybe suddenly something would show up. Maybe someone has done this before but I doubt it. And you might even try a month of methotrexate, although I cannot raise much enthusiasm for that as a test...

Interesting thought.

I must admit, it is often not clear to me, why certain "Immunosupressives" are used in one autoimmune disorder and not in the the other. Sometimes the molecular mechanisms explain it well, but often it seems more a matter of experience and successful trials, while the exact mechanisms of action remain blurry and unclear (to me). My thinking was, If ME is an autoimmune disease, why not search for some other good candidates, some other drugs, who could help us. Usually a specific range of drugs are used in other autoimmune disorders.

I would love to hear, why you think of specifically six subgroups in ME and what they are. Probably you cannot tell us, because of your ongoing research and I fully understand. However, I like your idea to use our reaction to steroids and maybe methotrexate to differ between certain subgroups.

 

[RYO]

It is certainly possible from an epigenetic stand point that ME/CFS patients likely fall into different subsets. My hunch is that eventually, researchers will discover multiple predisposing factors. There may be common pathways but others unique to individual patients. Just reading PR threads alludes to this phenomenon.

I just wish we were further along in understanding the "workings behind the clock". Until then we guess with "shotgun" approaches and treatment trials. Many treatments or medications that can cause serious side effects / unintended consequences.

 

[Jonathan Edwards]

I would love to hear, why you think of specifically six subgroups in ME and what they are. Probably you cannot tell us, because of your ongoing research and I fully understand. However, I like your idea to use our reaction to steroids and maybe methotrexate to differ between certain subgroups.

I did say it might be 946, but I do have thoughts about maybe 6 subsets, with some overlap. I don't mind saying what they are. I don't think anyone should hide ideas in science, although it is wise to be cautious about discussing actual experimental results until one is sure that they can be relied on.

Maybe I should put it on a different thread, since this one is about treatments directed at the immune system.

 

[heapsreal]

@Jonathan Edwards I have heard that prednisone and hydrocortisone can increase neutrophil counts, I don't fully understand this but could you briefly explain and would this help chronic neutropenia?
Just thought I would ask this question also as its commonly thought these steroids are immune suppressive but as you have mentioned that these immune suppressive aren't an accurate name of what many of these drugs do.

Cheers

 

[DanME]

I did say it might be 946, but I do have thoughts about maybe 6 subsets, with some overlap. I don't mind saying what they are. I don't think anyone should hide ideas in science, although it is wise to be cautious about discussing actual experimental results until one is sure that they can be relied on.

Maybe I should put it on a different thread, since this one is about treatments directed at the immune system.

That would be wonderful. Again thank you very much for your involvement in this forum.