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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Methotrexate

deleder2k

Senior Member
Messages
1,129
I think L-arginine combined with L-Citrullane is an option to nitroglycerin/isosorbide mononitrate. I think arginine is crucial in the production of NOS.
They are both supplements you can buy at the local pharmacy without a prescription. I don't know if Haukeland University Hospital has tried this on patients or not, but Fluge and Mella has launched this as an alternative to nitro.

I would do that. I've seen gammaglobulin do wonders for some. It is not used to correct or increase IgG levels in ME. Gammaglobulin are used some autoimmune diseases. If you're curious about why it may be beneficial @Jonathan Edwards has written a few theories in another thread.
 

Gingergrrl

Senior Member
Messages
16,171
Gammaglobulin are used some autoimmune diseases. If you're curious about why it may be beneficial @Jonathan Edwards has written a few theories in another thread.

@deleder2k or @Jonathan Edwards I would love to see those threads, too, and better understand how high dose IVIG is helping me so much from an autoimmune perspective. Tonight about 4-5 boxes I'd ordered from Amazon arrived and I was able to open the front door, bring in each box, open it, take out the items, open the items, and put each where it belonged all by myself without being short of breath.

For those who knew me prior to IVIG, you would be in absolute disbelief right now and I am in disbelief myself. If my remaining IVIG gets denied, I will fight with everything in me to get it back. What's that phrase from a movie (???) that they will have to "Pry it from my cold dead hand"? Am close to putting this in the miracle category and back in May 2016, I could not open the front door by myself to get out of the apt during a flood and was alone here w/my dog.

Sorry am getting off track but if high dose IVIG can do this, I can only imagine what Rituximab might do.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@deleder2k or @Jonathan Edwards I would love to see those threads, too, and better understand how high dose IVIG is helping me so much from an autoimmune perspective. Tonight about 4-5 boxes I'd ordered from Amazon arrived and I was able to open the front door, bring in each box, open it, take out the items, open the items, and put each where it belonged all by myself without being short of breath.

For those who knew me prior to IVIG, you would be in absolute disbelief right now and I am in disbelief myself. If my remaining IVIG gets denied, I will fight with everything in me to get it back. What's that phrase from a movie (???) that they will have to "Pry it from my cold dead hand"? Am close to putting this in the miracle category and back in May 2016, I could not open the front door by myself to get out of the apt during a flood and was alone here w/my dog.

Sorry am getting off track but if high dose IVIG can do this, I can only imagine what Rituximab might do.

Nobody nows how IVIG works and for most autoimmune disease we are not sure it does. The only reasonably sure case is immune thrombocytopenia. There is a plausible mechanism there involving other people's IG acting as a decoy by forming immune complexes of a sort that may use up complement or block Fc receptors but not destroy platelets in the process. This is unlikely to be relevant to most autoimmune diseases because immune complex formation of this sort is only relevant to lupus and immune thrombocytopenia in simple terms.
 

Gingergrrl

Senior Member
Messages
16,171
Nobody nows how IVIG works and for most autoimmune disease we are not sure it does.

I do not know how it works, only that it does. IVIG put my mast cell disease into remission and it has now stayed in remission for almost ten months. I now eat completely normal food, with almost no restrictions, no pre-food meds, and no allergic reactions. I also have a significant improvement in muscle strength, a decent improvement in breathing, and a slight improvement in autonomic issues.

It is not placebo and I tried endless treatments for over three years prior to IVIG that did not work. I'll take the improvements gladly whether I understand them or not (but wish I understood them)! Is it possible that it knocks down autoantibodies (such as beta adrenergic, anti muscarinic, anti calcium, etc) and replaces them with the decoy ones to block the receptors like you said above?

My biggest fear is that when I stop IVIG, all of my progress is gone vs. with Rituximab it could not only stay but continue to have more progress to the point of walking without wheelchair, etc.
 

Gingergrrl

Senior Member
Messages
16,171
How much IVIG do you take, and how often, @Gingergrrl ?

I started in July 2016 with a very low dose of 24 grams every 3-4 wks. Then by Oct I went up to 55 grams (bottom of autoimmune dose for me) every three weeks, and in Dec 2016 we went up to 82 grams, every three weeks, which I still do now. I can go up to 110 grams, but did not think my body could handle that high of a dose, and I was doing well with the 82 grams, that we decided to stay there. I can say more if it would be helpful to anyone, just let me know.
 
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Pendergast

Spain
Messages
82
Location
Spain
Hi all!

Didn´t Fluge & Mella try MTX with poor/bad reactions in ME patients? (maybe I got it wrong, my brain is like a lettuce :ill:).
My Dr. suggested to try Mycophenolate or Azathioprine or Rapamune, instead of Ritux (which I proposed even if I know that at this point is difficult to get and a risky med).

He told me that those are safiest options to give them a shot for a few months and see what happens.

I told him I would prefer to try first LDI (Low Dose Immunotherapy) and wait until the end of the year when we´ll know more about RTX´s efficacy and "The great Ron Davis et al" maybe will give us some good news ( at least I´m hoping that :angel:).

Also, reading Rapamune´s prospect the other day I saw that it can increase the risk of Linfoma, which we already have increased if I´m right (moreover, in my case I have familly background of Linfoma).

But if at the beginning of 2018 I have no better options, I think I will try that immunosupressors...

Hugs! :hug:
 

Gingergrrl

Senior Member
Messages
16,171
My Dr. suggested to try Mycophenolate or Azathioprine or Rapamune, instead of Ritux (which I proposed even if I know that at this point is difficult to get and a risky med).

I don't know all of the meds you mentioned but I would consider Azathioprine (Imuran in the US) to be riskier than RTX b/c it wipes out your entire immune system vs. just the B-Cells?
 

Pendergast

Spain
Messages
82
Location
Spain
Hi @Gingergrrl !, I didn´t know about these meds neither until my Doc spoke me about them. We had that conversation through the Wasapp so it wasn´t an official consultation.

It seems that are meds used to prevent rejection in transplants and according to MedlinePlus or Wikipedia (which I know it´s not a very reliable source, but it´s quick), Azathioprine, for example, is used in Ulcerative Colitis, Crohn disease or Autoimmune Hepatitis too.

So I think that are meds widely used but, as you say, I don´t know the risk level in our case ( even more if we consider that there are different subgroups).

Also, recently I read one patient´s good experience with Rapamune in the comments of one of the Cort´s blogs, and apparently, her Doc was using it with another few ME patients (maybe 3 or 4 I can´t remember now) with good outcomes.

This is all I know about the topic.

A big hug!! :hug:
 

pogoman

Senior Member
Messages
292
I've been on MTX now for about 9 months, the first 3 months I was also on IVIG 3 days a month.
There was joint pain (hips mainly) for a couple months, for a couple days after taking my weekly dose I'd be hurting more in the morning.
L-argninine and methyl folate seemed to help and that pain is rare now.

However, neither IVIG or MTX together and separately has lowered my blood CPK levels so my neuro stopped IVIG in October of last year and just kept me on MTX and for pain Norco.

I thought about stopping MTX as it does have minor risks long term (slightly higher chance of certain cancers I think?) but it has definitely helped my IBS that I've had for many years.
And I don't really have any side effects from it anymore so I am going to continue on it until I see the doc in June.


I'll also add, I've made some progress after pushing for lab tests and abdominal ultrasound because of edema issues.
Seems I am severely malnourished and needed to go on a high protein diet.
All this has started me thinking that the necrotizing autoimmune myopathy I have and alot of the other issues may be secondary caused due to malnutrition.
 
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