Rituximab for MCS and CFS

[Fogbuster]

If you are in the US and can get it approved by your insurance, the co-pays for the IVIG and infusion costs are not too bad.

Thanks @Gingergrrl, but unfortunately I live in the UK. So I think it's going to be perhaps cheaper for me compared to the US, but quite a bit more tricky to get hold of! Fingers crossed it's not too difficult.

 

[Gingergrrl]

@Gingergrrl, if you don't mind, what are the ballpark $ amounts involved in IVIG & infusion in your experience?

@voner I apologize I missed this question earlier and my IVIG co-pay has been approx $300 to $350 each time (am not sure why it varies a little). They are way behind with billing and the last statement I received was for March (and it's now Sept ) so I have many bills still coming.

I do not know yet what my Rituximab co-pays will be, b/c have not received any bills yet, but assume they will be fairly similar to IVIG although possibly more b/c I had IV Benadryl w/it vs. for IVIG I use my own pre-meds.

To put it in perspective, each day of IVIG without insurance would be $16K but with my insurance paying, my co-pay is approx $300-$350. I don't think anyone could afford these treatments in the US without insurance paying unless they were a millionaire which is why I fought for about 4 months the first time for approval (and after that initial approval it was much faster). Hope this helps.

 

[kyzcreig]

And you wouldn't be a millionaire very long if you paid this out of pocket

It's been 8 days since I did a small dose of IVIG. I've noticed the benefits are wearing off. Food sensitivities returning, etc.

It's remarkable how effective it was. I'm currently researching its MOA more for ideas on other therapies. I did what would be considered a low dose (replacement dose):

@Gingergrrl what dose are you on? In the literature I see them use 2g/kg per month

 

[Fogbuster]

And you wouldn't be a millionaire very long if you paid this out of pocket

It's been 8 days since I did a small dose of IVIG. I've noticed the benefits are wearing off. Food sensitivities returning, etc.

It's remarkable how effective it was. I'm currently researching its MOA more for ideas on other therapies. I did what would be considered a low dose (replacement dose):

@Gingergrrl what dose are you on? In the literature I see them use 2g/kg per month

Thank you for this, it's very helpful! I'd imagine the only way I can get hold of this stuff on prescription legally, would be to effectively move to the US... The bureaucracy of the NHS is just too much to get around for experimental treatment, surely? Especially as nothing significant came back in my blood tests.

Sorry to hear the food sensitivities etc have come back, but at least you now have an idea of the scale of the IVIG's potential. Do you plan to take another dose any time soon?

 

[Gingergrrl]

@Gingergrrl what dose are you on?

I was doing 82 grams every three weeks (in a 3-day split dose) but we have just now reduced my interval to every five weeks and will see how this goes. I feel hopeful that it will still be okay b/c I have Rituximab on board so no B-cells to "re-stock" the pathogenic autoantibodies (as my doctor explained it) which makes total sense to me. My insurance is covering IVIG through Dec, and then we will have to get a new Auth for next year) but since we'll be asking for the reduced interval of 5 wks (with plan to reduce even further to 6 wks and to do the maintenance Ritux infusions every 3 mos, etc), we think they will be okay w/it (with initial denial & appeal but I am prepared for this)!

 

[kyzcreig]

Thank you for this, it's very helpful! I'd imagine the only way I can get hold of this stuff on prescription legally, would be to effectively move to the US... The bureaucracy of the NHS is just too much to get around for experimental treatment, surely? Especially as nothing significant came back in my blood tests.

Do you plan to take another dose any time soon?

I think you overestimate the USA, it's just as bad if not worse than the UK for off label therapies. You'll have just as much luck finding a doctor that can help there. I would reach out to Dr. Myhill, I don't think she takes new patients but maybe there is an affiliated physician that would take you: http://www.drmyhill.co.uk/

I will do more IVIG, either by flying to Asia or by getting insurance to cover it. Based on the literature the effects I benefitted from are most likely the suppression of pro-inflammatory cytokines and induction of Tregs.

I was doing 82 grams every three weeks (in a 3-day split dose) but we have just now reduced my interval to every five weeks and will see how this goes. I feel hopeful that it will still be okay b/c I have Rituximab on board so no B-cells to "re-stock" the pathogenic autoantibodies (as my doctor explained it) which makes total sense to me. My insurance is covering IVIG through Dec, and then we will have to get a new Auth for next year) but since we'll be asking for the reduced interval of 5 wks (with plan to reduce even further to 6 wks and to do the maintenance Ritux infusions every 3 mos, etc), we think they will be okay w/it (with initial denial & appeal but I am prepared for this)!

It sounds like you're doing a medium level dose, not the highest. It's wonderful you're seeing results with that

What you describe as Rituximab's MOA is what I thought too. After reading more about it, it's more convoluted. B-Cells mature into Plasma Cells that produce antibodies, but most of your Plasma Cells are produced from B-Cell populations that Rituximab won't touch. This is why you don't have to worry about getting revaccinated. So the benefit of removing B-Cells with Rituximab is probably working on a different MOA, probably their role in the pro-inflammatory cascade. The end result is hopefully the same, production of autoantibodies decreases. I link to scientific sources discussing this in the OP.

 

[Gingergrrl]

I think you overestimate the USA, it's just as bad if not worse than the UK for off label therapies.

Although I have only lived in the US, and have never experienced getting medical care in the UK, in my opinion, it is much harder to get something off-label in the UK b/c they have to follow the NICE guidelines vs. in the US, a doctor can prescribe pretty much prescribe whatever they want (within reason of course) and the difficulty is getting insurance to pay for it. If it is expensive (even if it is something basic, on-label, and potentially life-saving), US insurance companies can refuse to pay for it. But I believe you have more of a chance at getting off-label treatments in the US.

It sounds like you're doing a medium level dose, not the highest. It's wonderful you're seeing results with that

IVIG is dosed by body weight so I started 14 months ago with 24 grams (low dose) and then increased to 55 grams (moderate dose) and finally to 82 grams which is high dose for me BUT is not the highest end of high dose (if that makes sense)! I was authorized for 110 grams every 3 wks but based on my experience, we knew I would not tolerate the 110 grams so we stuck with the 82 grams.

What you describe as Rituximab's MOA is what I thought too. After reading more about it, it's more convoluted. B-Cells mature into Plasma Cells that produce antibodies, but most of your Plasma Cells are produced from B-Cell populations that Rituximab won't touch. This is why you don't have to worry about getting revaccinated. So the benefit of removing B-Cells with Rituximab is probably working on a different MOA, probably their role in the pro-inflammatory cascade. The end result is hopefully the same, production of autoantibodies decreases. I link to scientific sources discussing this in the OP.

What is MOA? Sorry if stupid question! Sadly I do not understand your last paragraph but according to my doctor, Rituximab works (in autoimmunity) by killing the B-cells so they can no longer produce and "re-stock" the pathogenic autoantibodies. I'm certain that he "dumbed down" his explanation for me b/c of my lack of science background! He said there are some B-cells which cannot be touched (and that I did not need to be re-vaccinated for anything like you said) but that the combo of IVIG & Ritux would get the autoantibodies as low as possible. (And I know in cancer, the mechanism is different than autoimmunity b/c you are attacking cancer cells vs. autoantibodies).

We do not know if my entire illness is autoantibody mediated, but we are certain that a large part of it is b/c I have already seen great improvement. My remaining diagnoses of POTS/Dysautonomia are the most intractable and my other symptoms are now gone. But b/c of the POTS which for me includes: tachycardia, hypotension and low pulse pressure, shortness of breath, (and occasional but now much less frequent) chest pain when I stand/walk, raise my arms above my head, or bend down to pick up something from floor, I remain disabled and have to use wheelchair for anything but short distances.

But my MCAS remains in remission for 14 months (since I started IVIG). I was in restaurant on Sat night and ordered chocolate chip pancakes w/syrup. I asked waiter what was in it and he said part of it came from a "mix" and he did not know the ingredients. I ordered it anyway and had zero allergic reaction which still boggle my mind. I have not had an allergic reaction to a food or smell in 14 months, after nearly dying of anaphylaxis in 2015 and reaching the point that the only thing I was not allergic to was water. I can even use regular nail polish with no reaction. I suspect I am no longer allergic to anything (except for things I have been allergic to life long). I might not even be allergic to food dyes any more although I have not tested this and remain hesitant.

I do not know why my MCAS went into remission almost immediately (from IVIG) and stayed there but the POTS and ability to regulate my heart rate, blood pressure, and breathing when I stand/walk remains extremely challenging. It is now better without question and my muscle strength which was severely impaired, especially in my arms, is almost back to pre-illness. But if I stopped Atenolol & Midodrine (which I won't be doing!), I can't even imagine how much worse the POTS symptoms might become!

 

[Fogbuster]

But my MCAS remains in remission for 14 months (since I started IVIG). I was in restaurant on Sat night and ordered chocolate chip pancakes w/syrup. I asked waiter what was in it and he said part of it came from a "mix" and he did not know the ingredients. I ordered it anyway and had zero allergic reaction which still boggle my mind. I have not had an allergic reaction to a food or smell in 14 months, after nearly dying of anaphylaxis in 2015 and reaching the point that the only thing I was not allergic to was water. I can even use regular nail polish with no reaction. I suspect I am no longer allergic to anything (except for things I have been allergic to life long). I might not even be allergic to food dyes any more although I have not tested this and remain hesitant.

Wow. I find it incredible that just taking IVIG has stopped all your reactions to a whole range of things, congratulations. It's difficult for me to comprehend how a medication could suddenly do that, but I'd certainly be more than happy to get similar results!

 

[Fogbuster]

I think you overestimate the USA, it's just as bad if not worse than the UK for off label therapies. You'll have just as much luck finding a doctor that can help there. I would reach out to Dr. Myhill, I don't think she takes new patients but maybe there is an affiliated physician that would take you: http://www.drmyhill.co.uk/

I will do more IVIG, either by flying to Asia or by getting insurance to cover it. Based on the literature the effects I benefitted from are most likely the suppression of pro-inflammatory cytokines and induction of Tregs.

Oh right, I read somewhere that the US was less troublesome to get off label treatments. Are you saying that Dr Myhill or an affiliated physician of hers, could possibly offer IVIG as an off label treatment? I checked her site and she doesn't seem to mention it. I've previously avoided her as I wasn't too sure what to think of her material, some good, some a bit meh and some not so good imo.

I read this blog article earlier last week and I just was thinking it could possibly interest you and @Gingergrrl, as it's about how to increase Tregs with supplements and lifestyle factors - https://selfhacked.com/blog/treg/

 

[Gingergrrl]

Wow. I find it incredible that just taking IVIG has stopped all your reactions to a whole range of things, congratulations. It's difficult for me to comprehend how a medication could suddenly do that, but I'd certainly be more than happy to get similar results!

I do not know HOW it occurred but the high dose IVIG completely stopped my MCAS and all allergic reactions to food and smells. For 1.5 yrs my family and friends (and myself!) lived in fear that an allergic reaction might kill me. I truly cannot tell you how life changing this has been. The high dose IVIG also reversed my muscle weakness so I can function normally and can prepare food, take a shower on my own w/shower chair, open doors, packages, bottles, etc.

The part that is a little better but still remains bad (so far) is the severe autonomic dysfunction which prevents me from standing/walking more than a short distance without wheelchair which in turn prevents me from driving a car or going anywhere without someone pushing my wheelchair. It is maddening but I believe there is still hope b/c the 3-month mark from my first Rituximab infusion is not until 10/18 and the 3-month mark from the 2nd Ritux infusion is not until 11/1. So, it is still very possible, even according to my doctor, that I can have improvements from Ritux (and the additional IVIG) that have not yet occurred.

Oh right, I read somewhere that the US was less troublesome to get off label treatments.

@Fogbuster Can you remind me what country you are in? Are you in the UK or somewhere else? In my experience, it is far easier to get off-label treatments prescribed by a doctor in the US but this does not mean that insurance will pay for them (which is a whole separate issue). In the US, you can have multiple doctors saying that you need a specific medication or treatment but insurance can still say no.

I read this blog article earlier last week and I just was thinking it could possibly interest you and @Gingergrrl, as it's about how to increase Tregs with supplements and lifestyle factors - https://selfhacked.com/blog/treg/

Thank you so much and I just bookmarked it to read later.

Edit: I love the picture of the doggies in your avatar!

 

[Fogbuster]

I do not know HOW it occurred but the high dose IVIG completely stopped my MCAS and all allergic reactions to food and smells. For 1.5 yrs my family and friends (and myself!) lived in fear that an allergic reaction might kill me. I truly cannot tell you how life changing this has been. The high dose IVIG also reversed my muscle weakness so I can function normally and can prepare food, take a shower on my own w/shower chair, open doors, packages, bottles, etc.

Well as long as it gets you better in a safe manner for the long term, the small details such as why, how etc, aren't always THAT important! To go from having occasional moments of fearing for your life when you've eaten a certain food, to now be able to eat almost anything you like, is pretty remarkable stuff!

The part that is a little better but still remains bad (so far) is the severe autonomic dysfunction which prevents me from standing/walking more than a short distance without wheelchair which in turn prevents me from driving a car or going anywhere without someone pushing my wheelchair. It is maddening but I believe there is still hope b/c the 3-month mark from my first Rituximab infusion is not until 10/18 and the 3-month mark from the 2nd Ritux infusion is not until 11/1. So, it is still very possible, even according to my doctor, that I can have improvements from Ritux (and the additional IVIG) that have not yet occurred.

I'd be keen to hear how you do from these infusions etc, so if you can muster it, please do try and keep us posted on that. Best of luck to you with it helping your autonomic issues.

@Fogbuster Can you remind me what country you are in? Are you in the UK or somewhere else? In my experience, it is far easier to get off-label treatments prescribed by a doctor in the US but this does not mean that insurance will pay for them (which is a whole separate issue). In the US, you can have multiple doctors saying that you need a specific medication or treatment but insurance can still say no.

That's pretty much the same line of thinking I read about off-labels in the US. I'm based in the UK. Although I think I'm already fighting a losing battle with having no diagnostic markers on my blood tests, to indicate any inflammatory, immune dysfunction etc. I guess my concern is, what is my next step to take me closer to being able to access IVIG and Rituximab, without paying astronomical prices or being shafted by the insurance companies?

Thank you so much and I just bookmarked it to read later.

Edit: I love the picture of the doggies in your avatar!

Haha thanks, they're a cute bunch! I definitely feel the immune system material from selfhacked could be helpful for us. I'll post anything else I feel could help in the coming weeks.

 

[IThinkImTurningJapanese]

I will do more IVIG, either by flying to Asia or by getting insurance to cover it. Based on the literature the effects I benefitted from are most likely the suppression of pro-inflammatory cytokines and induction of Tregs.

Here's a cheaper, easier option for that.

 

[perovyscus]

Hello, again. Could you please PM me the name of your physician?

 

[kyzcreig]

I returned from Taiwan 2 weeks ago. I did a full course of IVIG, 2g/kg body weight over 5 days (~30g/day). I had the same immediate improvement in environmental and food sensitivities. But it wasn't qualitatively better. I didn't notice any benefit over the 10g doses I was doing in the USA. I also got the dreaded headaches. It's unlike anything I've experienced, very sudden and painful.

I also did the 3 month infusion of Rituximab. I noticed a decrease in sensitivities in the following 2 weeks, just like before.

I am going to try to qualify for IVIG via insurance. It takes some work to find an insurance plan that will actually pay for it, even if you meet the medical criteria.

 

[Learner1]

I returned from Taiwan 2 weeks ago. I did a full course of IVIG, 2g/kg body weight over 5 days (~30g/day). I had the same immediate improvement in environmental and food sensitivities. But it wasn't qualitatively better. I didn't notice any benefit over the 10g doses I was doing in the USA. I also got the dreaded headaches. It's unlike anything I've experienced, very sudden and painful.

I also did the 3 month infusion of Rituximab. I noticed a decrease in sensitivities in the following 2 weeks, just like before.

I am going to try to qualify for IVIG via insurance. It takes some work to find an insurance plan that will actually pay for it, even if you meet the medical criteria.

For IVIG headaches, I had to add dexamethasone, Benadryl, naproxen, fexofenadine, curcumin, boswellia, and hemp oil. All of which help. I'd ended up in the ER with aseptic meningitis early on, so the goal is to stay out of the ER. I load up on the meds and then taper off after 3 days.

How is it you did IVIG and Rituximab together? My doc seems to have patients on IVIG for several months and then moves to Rituximab if they need it.

My insurance approved IVIG quickly, but I met the medical criteria for CVID. Its a pretty standard silver plan.

 

[Gingergrrl]

@kyzcreig Thanks for the update and I had been wondering how you were doing and hoping it went well with your IVIG and Ritux.

Wow, so you were doing 150 grams of IVIG in a 5-day split dose?!!! If I understood you correctly, that is s really high dose. Mine is 82 grams and it has recently become more challenging for me to tolerate. I am actually in the car on the way to Day 1 of IVIG now (not the driver LOL).

I hope you can find an insurance to cover your future treatments which is half the battle right there! Best wishes to you.

 

[ebethc]

How long is a typical course of IVIG treatments? (ie, 3-5 wk intervals for ..2 yrs? 1.5 yrs?)

How long between IVIG treatments? Or, do some get just one treatment course and remain healthy for years?

 

[Gingergrrl]

How long is a typical course of IVIG treatments? (ie, 3-5 wk intervals for ..2 yrs? 1.5 yrs?)

How long between IVIG treatments? Or, do some get just one treatment course and remain healthy for years?

@ebethc Sorry for the delay and am just seeing this thread. I do not believe that there is any "typical" course of IVIG treatment. I belong to two IVIG groups and there are hundreds (if not thousands) of different conditions that people are being treated for with IVIG. Some require it literally for life (for some immune deficiency conditions) while others do it for much shorter courses.

I have done it for 16 months and my interval was 3-wks but is now stretched out to 5-wks. I have never heard of someone just doing one treatment and then being healthy for years (but I guess anything is possible)! Hope this helps.

 

[ebethc]

@ebethc
I have done it for 16 months and my interval was 3-wks but is now stretched out to 5-wks. I have never heard of someone just doing one treatment and then being healthy for years (but I guess anything is possible)! Hope this helps.

sorry - I mean after the entire course (1.5 yrs? 2 yrs? ...NOT one tx), do many patients get a period of time where they can take a break? my question is: how long is that break?

thanks!

 

[Gingergrrl]

sorry - I mean after the entire course (1.5 yrs? 2 yrs? ...NOT one tx), do many patients get a period of time where they can take a break? my question is: how long is that break?

thanks!

I honestly have no idea and like I said, the variation amongst members IVIG treatments in my two IVIG groups is staggering. There is no "standard" course of treatment or "one size fits all" type protocol.

Some people do a few months, others do a few years, and some do it lifelong. The dosages, intervals, break periods, all greatly vary. I wish I had a better answer!