Cimetidine: An immune modulator that actually seems to be working for me

@Woolie curious if you have any update on the cimetidine. I'm looking into giving it a go. I was intrigued to see that it helped people with chronic mucocutaneous fungal infections - I've dealt with fungal skin infections for as long as I can remember, but I have negative Candida albicans antibody titers. Maybe it's immune modulating properties will aid my unfortunate dermis.
 
James Morris-Lent said:
@Woolie curious if you have any update on the cimetidine. I'm looking into giving it a go. I was intrigued to see that it helped people with chronic mucocutaneous fungal infections - I've dealt with fungal skin infections for as long as I can remember, but I have negative Candida albicans antibody titers. Maybe it's immune modulating properties will aid my unfortunate dermis.
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Sure. I've been on the drug since early march, and on 1600mg since mid April (up from 1200mg). In the six months before I started the cimetidine, I had quite a few really bad episodes - crashes that lasted 6 weeks plus, with awful flu-like symptoms. Since March, I've had some bad episodes but they've been much shorter. The worst lasted 4 days.

I'm still not well enough to go back to work, though. The episodes can still hit any time, and even in between them, I don't feel "normal" and I have to take it easy, do lots of resting. So no cure, by any means. Also, I can't say with 100% certainly the improvements I've experienced are due to the drug, because my highs and lows are really variable and I think triggered by things like viruses. So it could have just been a good period, not too many nasty triggers.

I've had no adverse effects, so I guess if you can give it a try without spending too much money, it could be worth a go. The only adverse effect was feeling a bit flat (sort of unmotivated to do anything) when I started and then again when I went up to 1600mg. But after levelling out, that went away.
 
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Ranitidine is also the strongest acetylcholinesterase inhibitor(cholinergic) among H2 blockers, maybe that could be responsible for its effect. Some people seem to have moderate success with Mestinon (pyridostigmine) which is primarily an acetylcholinesterase inhibitor. There is of course a mast cell inhibiting theory as you all know and that's why I tried it myself, although I have to say that for me it's a bit more complicated because stomach acid is something that changes my symptoms. So even PPIs have some effect, although H2 blockers are much more effective.
I tried Ranitidine myself with very impressive results, but unfortunately it lost it's efficacy rather quickly, which is a common thing for H2 blockers. Not sure how much it applies to it's cholinergic effect though...
 
Pechius said:
Ranitidine is also the strongest acetylcholinesterase inhibitor(cholinergic) among H2 blockers, maybe that could be responsible for its effect.
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I did try ranitidine. But that had no noticeable effect.

In my case, there was a specific rationale behind the cimetidine. Its supposed to modulate the action of T-regulator cells, and have a general anti-inflammatory effect.
 
Update: I'm still continuing to have some better periods on cimetidine. So less days in bed, more days where I can be active. Last week, some days that I felt 100% back to normal.

Of course, I still can't tell if this is just a good patch anyway - could have nothing to do with the cimetidine.
 
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Woolie said:
Update: I'm still continuing to have some better periods on cimetidine. So less days in bed, more days where I can be active. Last week, some days that I fel 100% back to normal.

Of course, I still can't tell if this is just a good patch anyway - could have nothing to do with the cimetidine.
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Wow that sounds amazing ...I would love just one day 100% back to normal.

I guess it’s difficult knowing how much to do or plan to do at the moment, but it does sound positive. pleased you are getting something back :)
 
@Woolie - I'm glad you brought up cimetidine. This was the first treatment I tried when I was very ill that brought me some relief. I read about it on PR. When I started seeing Dr. Chheda, she didn't want me taking it because it uses the P450 enzymatic pathway (hope I'm getting that right) and can potentiate other drugs. She tried me on other H2 inhibitors, like famatodine. I've also tried lots of stuff for MCAS (loratadine, fexofenadine, ketotifen, and cromolyn) with little effect. I recently resumed cimetidine on my own again and it helps better than any other antihistamine for me.
 
Londinium said:
Hi @Woolie, I came across this thread whilst looking for forum posts on Ranitidine. If you don't mind me asking, how are you finding Cimetidine six months on? Were the initial positive signs sustained?
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Hi @Londinium, sorry for the slow reply!

Well, since June when I last checked in, I had a nasty crash (although slightly shorter in duration than usual). Then I started doubting the Cimetidine, and thinking it was just correlated with a good patch.

I went back to my specialist and he said not to give it up, but rather to alternate it with a new option, Montelukast. His reasoning was that my system might "get used" to certain drugs, and lose their effectiveness, so you have to keep switching it up.

Around that time, I was also admitted for a tonsillectomy, the purpose being to reduce the severity of my worst episodes (apparently it works in some cases similar to mine). The tonsillectomy itself gave me the worst flare of my life and that lasted for several weeks, but was then followed by a period of pretty good health. Then on my first switch-up to Montelukast, things improved by an order of magnitude more. I felt like the patients in "Awakenings". Instead of having more good days where I could do more, I started having days when I could do anything. I haven't had this level of ability since around 2007, and then only for short periods.

I started taking long walks and doing sit-ups and roller-blading. Yes, roller blading.

During the Montelukast periods, I've had a couple days with some symptoms, but those days have been isolated and the symptoms have passed by the next day (they can last anywhere between a day and six weeks for me). They were also on the mild side (I felt tired, sore, and needed to rest but without the burning headache and the feeling of being crushed under a rock, like in my worst episodes).

Its been going on long enough, and its been so consistent with the switches to Montelukast that I'm 90% convinced the drug is doing this. I'm usually so careful not to overattribute fluctuations to current treatments, but its just the magnitude of the improvement, which is unmistakeable.

It seems I'm catching more things since the montelukast, and that may explain the odd days of tiredness here and there. but its the antipodean summer here, which is a melting pot of northern hemisphere winter viruses (brought over my visitors), and weird stuff from Asia, and it can be a challenge for the best of us.

I'm still trying to work out how Montelukast is helping me. Something about neutrophils, eosinophils and macrophages I think. But I guess that's a question for another thread!
 
To anyone reading this hopeful story, I just wanted to add: I am weird.

Although I was originally diagnosed with MECFS, it was always a "weird" version. Lots of immune symptoms (few cognitive ones), and a relapsing-remitting sort of, episodic, pattern. Pretty much destroyed my life and kept me almost entirely bedbound for the 18 months before treatment. So not better than the classic ME presentation, just different.*

So no way of saying for sure if this treatment would work for anyone else here.

(* actually I would say I've had it better than those with the more classic ME presentation, because I haven't had much brain fog, and I woudl happily put up with all the other bodily shit I've endured in preference to that!).
 
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Woolie said:
Hi @Londinium, sorry for the slow reply!

Well, since June when I last checked in, I had a nasty crash (although slightly shorter in duration than usual). Then I started doubting the Cimetidine, and thinking it was just correlated with a good patch.

I went back to my specialist and he said not to give it up, but rather to alternate it with a new option, Montelukast. His reasoning was that my system might "get used" to certain drugs, and lose their effectiveness, so you have to keep switching it up.

Around that time, I was also admitted for a tonsillectomy, the purpose being to reduce the severity of my worst episodes (apparently it works in some cases similar to mine). The tonsillectomy itself gave me the worst flare of my life and that lasted for several weeks, but was then followed by a period of pretty good health. Then on my first switch-up to Montelukast, things improved by an order of magnitude more. I felt like the patients in "Awakenings". Instead of having more good days where I could do more, I started having days when I could do anything. I haven't had this level of ability since around 2007, and then only for short periods.

I started taking long walks and doing sit-ups and roller-blading. Yes, roller blading.

During the Montelukast periods, I've had a couple days with some symptoms, but those days have been isolated and the symptoms have passed by the next day (they can last anywhere between a day and six weeks for me). They were also on the mild side (I felt tired, sore, and needed to rest but without the burning headache and the feeling of being crushed under a rock, like in my worst episodes).

Its been going on long enough, and its been so consistent with the switches to Montelukast that I'm 90% convinced the drug is doing this. I'm usually so careful not to overattribute fluctuations to current treatments, but its just the magnitude of the improvement, which is unmistakeable.

It seems I'm catching more things since the montelukast, and that may explain the odd days of tiredness here and there. but its the antipodean summer here, which is a melting pot of northern hemisphere winter viruses (brought over my visitors), and weird stuff from Asia, and it can be a challenge for the best of us.

I'm still trying to work out how Montelukast is helping me. Something about neutrophils, eosinophils and macrophages I think. But I guess that's a question for another thread!
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This is really interesting. Some of the patients in Jarred Younger's recent studies were also on Montelukast, which was the first time I'd seen other pwME on the treatment.

I, too, noticed a significant difference in my ME symptoms when I started Montelukast. It was like that dead, heavy, bone-crushing sensation in my arms and legs went overnight. I attribute it to more oxygen getting to my limbs. Over time, the effects are becoming less noticeable again, but it suggests what might be going wrong.

I should add, though, that I do have asthma, which I now realise has steadily got worse over the years. I suspect it's been an aggravating factor in my ME symptoms (or perhaps it's the other way around). It's leading me to believe that oxygen deprivation might have a lot of overlap with ME, which may fit in with Ron's findings of RBC deformability.
 
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