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

From Wikipedia, https://en.wikipedia.org/wiki/Cimetidine

https://en.wikipedia.org/wiki/H2_antagonist

Ranitidine is available from Amazon UK (and numerous other places no doubt). Anecdotally, and off topic, I have heard of someone who has responded somewhat to omeprazole, but they had quite serious gastro issues, which is what it was mainly prescribed for.

 

I am currently taking omeprazole to prevent gastric issues while taking indometacin.
I have wondered if cimetidine could be substituted. @Woolie 's dose is high however.
I have not noticed any benefits for ME from omeprazole at my level of 20 mg once daily nor any side effects.

 

To be fair I've no idea of the omeprazole dose that my friend takes.

I take another anti-histamine, https://en.wikipedia.org/wiki/Cetirizine, as I've found that it has a heart rate reducing, as reported by my Fitbit, and sleep enhancing effect.

 

Just thought I would post here a bit more info from the nhs

https://beta.nhs.uk/medicines/cetirizine/

Last summer was the pits so I guess I’m going to have to try some this year .. l have previously taken loratadine in the summer which seemed ok but I wouldn’t know whether it was better with or without since a lot can happen in a year. So many to choose from

https://beta.nhs.uk/medicines/loratadine/

 

I think cetirizine is now being touted as a useful secondary treatment alongside LDN by Dickson Pharmacy and the LDN Trust. They think this is because it may have remyelinating properties, although studies are needed to show this, in my opinion.

 

http://forums.phoenixrising.me/inde...imetidine-for-cfids-worked-for-me.1512/page-4

@Hutan posted the above very detailed thread most of which I have now read. The poster had an initial very positive response to cimetidine BUT please read to the end. Not quite what it seemed initially.

I actually don't have the symptoms described on that link. I can have flu jabs etc without problems: my symptoms are pem, lack of stamina, orthostatic intolerance, breathlessness and more. Was doing well on antivirals but have been overwhelmed lately. I would love to be an 8/10 functionality so it is tempting to look for more, for alternatives. I think I just need to get over my current difficulties and give the antivirals a chance when not so ill with other things. We do have such different symptoms which makes it most confusing.

But DO read to the end.

 

@Woolie
I hope you continue to do well on the cimetidine. When I posted above I had forgotten that the thread started with your benefits from the drug: I would have phrased it differently if I'd remembered.
Am very foggy as is obvious but I do think reading the end of above link is necessary.
Thank you for sharing your experience and go well.

 

Interesting about the mouth ulcers. I'd never thought much about mine at all until I read this stuff.

The more I read people's stories, the more I realise the MECFS isn't one condition, it probably defines a collection of very different problems.

The articles on PFAPA I read suggested only around 40% of PFAPA patients get relief, but there was some evidence that the benefit was sustained after stopping the medication, at least for some time.

In some patients, the effect wears off in a few years and they need to be changed to other medications.

 

@Binkie, I read to the end of the link you gave, but don't know what to make of it all. The cimetidine this person was taking was a much lower dose than mine. They did seem to have similar symptoms to me, but also some autoimmune stuff (positive ANA test). They seem to have drawn the conclusion at the end that being put on benzodiazepines - and then withdrawing from them - and some other drugs had caused their ME.

 

Mouth ulcers are said to be common in MCAS, too.

 

@Woolie
I read it all yesterday but have forgotten a lot.
I took from it that she had a diagnosis of CFIDS and found the cimetidine helpful, such that she was sufficiently improved to plan to return to work etc. She did have a range of symptoms and was also taking antivirals etc.

In the end the CFIDS diagnosis seemed not to be correct. She was suffering from benzo withdrawal from Ativan and improved when Ativan was added back and she had assumed the improvement was down to cimetidine. She had an awful time trying to get off the benzos including Valium, her health plummeted and life was severely affected all ways round. Her July 2011 post explains it.

Lots of lessons there. I do take nitrazepam for sleep but am reconciled to staying on it; just 5 mg, I haven't increased the dose although it is tempting since my sleep is awful. I know how to titrate down but unless I improve remarkably, doubt if this is feasible. Lessons there. I hope she is doing ok now.

 

It’s also a symptom of folate deficiency

 

I hope everyone is aware that omeprazole and cimetidine and completely different classes of drug. They affect acid production in quite different ways.

The 1200mg dose of cimetidine, or even the 1600mg dose is very standard as far as I can see. It is not in any meaningful sense 'high'.

 

Mouth ulcers are also a symptom of Behcet's Disease.

 

Please be assured that I would not attempt to change my drug or dose without medical input.
I am doing very well with omeprazole as prescribed.

The poster on the other site was taking much lower doses than @Woolie but it seems there were several problems with medication overall.

Just occasionally it is tempting to fantasise that there might be a drug " out there" that would help more but it is a fantasy which is why the research is so desperately needed.

EDIT: I think Ron Davis was into this actually? Any comments?

 

@Jonathan Edwards

In an ideal absolutely scenario, one might hope that the correct treatment for one condition might help ME.
@Woolie is doing well with her treatment.
Maybe there are other areas where this could happen?

 

@Binke4, sorry I only just saw this.

Use of cimetidine for its immunomodulatory properties seems to be off-label. So its not listed on official sites that list the "indications" for cimetidine.

This article talks about the immune aspects of the drug:
https://www.ncbi.nlm.nih.gov/pubmed/2138376

This article talks about its effectiveness in PFAPA (a periodic fever syndrome):
https://www.ncbi.nlm.nih.gov/pubmed/1565557

On reflection, its funny that when I first read about the 43% effectiveness rate of cimetidine in PFAPA (second article), I wondered if it was even worth trying. But in reality that's an effectiveness rate four times greater than CBT or GET for CFS, even if you take their results at face value.

It just made me realise that we do have very different expectations of drugs and psychotherapy. In psychotherapy, we're ok with a tiny percentage of improvers, but we expect drugs to work for most people, at least.

 

I guess with drugs we all worry more about what the side effects are and balance this vs benefits, whereas the side effects of psychotherapy are far more subtle so I suppose some people assume they don’t exist? I think it’s also a matter of perspective based on how many treatments are available?

Personally I’ve never gone in for brainwashing of any sort, including hypnosis ...I’m always worried one day I may start clucking like a chicken at an inopportune moment