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

[Woolie]

I posted here about ranitidine a while ago. It looked like that was helping me at first, but that benefit didn't pan out, I'm afraid.

Since then, I've been placed on cimetidine. Apparently, that was the drug the doc wanted to try me on all along, but its more expensive.

I didn't expect anything from this drug, because its in the same class of drugs as ranitidine, and that didn't work. But I've had quite significantly improved health since changing over.

Not normal mind. But before I was getting really severe episodes lasting weeks, and now, these come and go in as little as one day. I have even been out in the garden doing weeding and some dog walking, both of which I could rarely do prior to the cimetidine.

I've been on it around six weeks now, so that's a fair sample to assess.

Cimetidine is a histamine-2 blocker (inhibits the action of histamine on cells), and is generally used for gastric complaints. But it also has immune-modulating properties, inhibiting chemotaxis and T-cell activation. Its a recommended treatment for some periodic fever syndromes, which are very ME-like in presentation. At least the relapsing-remitting forms.

I'm weird in many ways (for example, I have very fluctuating symptoms, and consistently raised blood markers like CRP and platelet counts). But I think its pretty likely that at least some of your out there have something similar to me and might want to talk to your doc about giving this a try. The drug seems to have a good safety profile.

I'll keep you posted on how it goes.

(edited to remove some identifying content)

 

[Sasha]

Really glad you've found something that gives you some improvement, @Woolie.

 

[Mattie]

Good for you @Woolie !
Will watch thread for follow ups.

 

[Trish]

Early days, but it's great to hear of your improvement. I hope it lasts.

 

[adreno]

Cimetidine is also an mTOR activator, which may be good for us, if the theories about inappropriate metabolism in ME are right

 

[arewenearlythereyet]

That is good news. I hope it does work out. I’m really interested in the histamine connection so look forward to your next update.

 

[Jan]

So pleased to hear that Woolie, long may it continue to help, it must be wonderful to have a little more energy and a little less payback!

I shall look forward to updates.

 

[Hutan]

So interesting @Woolie and I'm so glad you have been better lately.

I have consistently mildly raised CRP. However my son, who became ill at the same time, does not. I'll have to read up on cimetidine.

What kind of a doctor are you seeing who is recommending this? I see cimetidine is available without a prescription in New Zealand.

ETA: Have you done any testing yet to see if your CRP and platelet counts have normalised?

 

[Binkie4]

Very glad you have made an improvement @Woolie but lacking in understanding why this drug ( Zantac? )should have this effect.
I am in UK so have no access to biological treatments. I saw Dr Bansal yesterday but had no focus for my appt so did not make best use of the time.
In what circumstances does cimetidine help.
I am taking acyclovir for 10 months and seemed to be improving but have had huge health stress, comorbidities, for 4 months and am doing less well.
Can you give me a cimetidine link with necessary tests? Many thanks. I hope you continue to improve.

 

[arewenearlythereyet]

Very glad you have made an improvement @Woolie but lacking in understanding why this drug ( Zantac? )should have this effect.
I am in UK so have no access to biological treatments. I saw Dr Bansal yesterday but had no focus for my appt so did not make best use of the time.
In what circumstances does cimetidine help.
I am taking acyclovir for 10 months and seemed to be improving but have had huge health stress, comorbidities, for 4 months and am doing less well.
Can you give me a cimetidine link with necessary tests? Many thanks. I hope you continue to improve.

You’ve probably already checked this out already @Binkie4

http://www.lloydspharmacy.com/en/tagamet-400mg-tablets

Obviously low stomach acid in the long term can cause b12 absorption problems amongst others

 

[Webdog]

25 years ago, I used to have athletic socks that said "Tagamet" in large blue letters on the side. They were from a pharmaceutical rep.

I bought some Tagamet recently at the grocery (Safeway) and tried it for a month. Didn't seem to do anything for me. Very glad Woolie is seeing benefit.

 

[Hutan]

There's a 12 page thread here at PR on cimetidine. I'm just working my way through it.

It looks as if some others have found some benefit and that it was one of the drugs that Dr Goldstein had in his toolkit but that, because of its effect on hormones, men should be particularly careful with it.

http://forums.phoenixrising.me/index.php?threads/tagamet-cimetidine-for-cfids-worked-for-me.1512

 

[AliceLily]

What kind of a doctor are you seeing who is recommending this? I see cimetidine is available without a prescription in New Zealand.

@Hutan Do you mean that we can purchase it online. I checked whether I could get it over the counter last year and was told to order it online from Australia. I didn't follow through though.

I don't have raised CRP though. Whether that makes a difference for trying it I don't know. I need to read up on cimetidine again.

 

[Webdog]

Tagamet is definitely over the counter in the US and readily available at places like Walgreens and Safeway.

 

[Woolie]

Yea, its Tagamet.

I've been seeing a Clinical Immunologist at the hospital. He thinks I have a periodic fever syndrome, that is making my innate immune system spin out of control. Also known as autoinflammatory disease.

Tagamet is a treatment for PFAPA, which is a periodic fever syndrome.

The tagamet (cimetidine) I'm taking is a pretty massive dose: 1200mg, possibly upping to 1600mg soon.

My symptoms:
- relapsing-remitting: my bad episodes feel like the flu, and can be brought on by overexertion, vaccination, or infection. The flu jab brings on four weeks of hell.
- severe physical fatigue on bad days (sort of a "crushed under a brick" feeling) and general sick flueyness
- "furry" mouth, sore mouth, sore throats, burning glands in neck, feeling hot all the time.
- very little cognitive impairment, but a bloody awful headache

My profile:
- high levels of C-reactive protein (CRP) in blood. In good periods its in the 6-9 range, but during a flare it goes up to 30.
- tachycardia (resting heart rate over 100 in a flare)
- borderline abnormal on a serum amyloid test.
- consistently high platelet counts (in the 500s)
- raised CD4 and CD8 T cell counts, at least during a flare
- excellent response to prednisone - large doses (60ms daily) make my symptoms go away

I am in UK so have no access to biological treatments. I saw Dr Bansal yesterday but had no focus for my appt so did not make best use of the time.

That's the same where I am @Binkie4, although doctors here do have more freedom to treat symptoms as they see fit. I got "lucky" in a way, because apparently the raised CRP, the raised serum amyloid and the tachycardia are dangerous. The raised amyloid levels can cause kidney failure and the other two heart attack. So that gets you some attention.

I've been ill for 28 years, though, so they took their time about it.

Two things helped get me noticed. One was paying for a private consultation with a rheumatologist. The other was getting my bloods taken at my absolute worst. I've also got more severe lately, so probably more stuff is showing up than it used to.

So interesting @Woolie
I have consistently mildly raised CRP. However my son, who became ill at the same time, does not. I'll have to read up on cimetidine.

Mine seems to be more reliably and consistently raised now that when I first got ill in my twenties. I suspect when I was younger, it probably completely normalised during good periods, so nobody noticed anything.

What kind of a doctor are you seeing who is recommending this?

Clinical immunologist.

ETA: Have you done any testing yet to see if your CRP and platelet counts have normalised?

Nothing has happened to the weird platelets, but CRP has been 7 or below.

(Edited to remove some identifying information)

 

[Forbin]

I've always thought it was an amazing coincidence that Tagamet, a front line drug in the treatment of stomach ulcers, was approved for over-the-counter sale in the US in 1995... the same year that the the FDA began to recommend antibiotic treatment for ulcers caused by h. pylori. I think Tagamet was the largest selling drug in history at that point, so a cure for ulcers would have been a real blow to sales. But, just in time , it was reclassified to be sold OTC for "heartburn."

FWIW, I developed "superficial stomach ulcers" in the second year of ME. I was put on Tagamet for a while, but it didn't seem to help the stomach pain much, if at all. It also didn't seem to affect my ME symptoms in any way. I think my stomach pain probably got better after I took Azulfifdine (sulfasalazine) for a later separate diagnosis of chronic ulcerative colitis, which seemingly "vanished" upon re-examination a month later (precisely the way chronic ulcerative colitis doesn't).

 

[Hutan]

Thanks for that detailed reply @Woolie. The OP in the Phoenix Rising thread who found cimetidine helped had fevers and mouth ulcers as symptoms which would fit with the PFAPA idea.

I don't often get measurable fevers (although I do get sweats and chills and I'm not often measuring). And my platelet counts are normal so maybe PFAPA doesn't fit me so well.

However, my CRP has been between 7 and 20 since becoming ill, usually 10 to 14 and I get mouth ulcers and tachycardia when I am generally worse. The one time I had some immunology tests I had a high number of CD8 like you (I think that is the T suppressor cells?) but the immunologist didn't think there was anything worth following up.

When I was looking at my platelet counts I saw that my fibrinogen levels were high the one time they were measured - that appears to be indicative of inflammatory conditions, among other things. And my albumin levels are low normal to low - which can indicate an inflammatory condition.

I read that with PFAPA in childhood there are infections in the tonsils, with tonsillectomy recommended. Both my son (with ME) and I have had tonsillectomies (and my daughter who also got ME but is essentially recovered).

I got "lucky" in a way, because apparently the raised CRP, the raised serum amyloid and the tachycardia are dangerous. The raised amyloid levels can cause kidney failure and the other two heart attack. So that gets you some attention.

My doctor is very relaxed about my CRP - she suggests that some people just have a raised CRP, it's 'their normal'. But from my reading, it looks as if it really isn't a great thing to have high CRP, even mildly high. My resting heart rate can get to 130 when things are bad. Maybe I need to look into this serum amyloid test.

I'm not sure how that would fit with the three of us in my family all getting 'ME' at the same time - seemingly after a virus. Although you did say that infections can be a trigger for a relapse? And I did have a year off school when I was a child with what was diagnosed with 'ME'.

@Hutan Do you mean that we can purchase it online.

'Non-prescription cimetidine has been approved in New Zealand, which becomes the second country to grant this status for SmithKline Beecham's antiulcerant. The product will be available through pharmacies only in 200mg/10 tablet packs, indicated for the treatment of heartburn, indigestion and dyspepsia.' 1994 source
​

That dose of yours @Woolie, it certainly is high. It makes me a little wary about going to the pharmacy with a big bag for a lot of packets and trying it without a doctor's supervision. How long was it before you felt the cimetidine was helping?

 

[Hutan]

This is quite interesting.

https://www.hindawi.com/journals/bmri/2013/501305/

Review Article
Clinical Genetic Testing of Periodic Fever Syndromes
Annalisa Marcuzzi,1 Elisa Piscianz,1 Giulio Kleiner,1 Alberto Tommasini,1 Giovanni Maria Severini,1 Lorenzo Monasta,1 and Sergio Crovella1,2

Periodic fever syndromes (PFSs) are a wide group of autoinflammatory diseases. Due to some clinical overlap between different PFSs, differential diagnosis can be a difficult challenge. Nowadays, there are no universally agreed recommendations for most PFSs, and near half of patients may remain without a genetic diagnosis even after performing multiple-gene analyses.​

 

[Woolie]

However, my CRP has been between 7 and 20 since becoming ill, usually 10 to 14 and I get mouth ulcers and tachycardia when I am generally worse. The one time I had some immunology tests I had a high number of CD8 like you (I think that is the T suppressor cells?) but the immunologist didn't think there was anything worth following up.

You profile sounds very much like mine, @Hutan.

My CD4 levels well exceed my CD8 ones, the ratio is abnormally high. I think the pattern you describe - disproportionately high CD8 cells - is the more common one in most people diagnosed with MECFS. But I've only been tested once, during a very bad episode, and I'm starting to appreciate that these things are not necessarily stable traits, rather indicators of certain events that are happening at the time.

Your CRP is really high from what I can see. You might find it goes up even higher than 20, but you haven't been tested at the right time. CRP seems to fluctuate quite wildly. I was only able to see mine reach 30, because I was given a vaccination challenge and got tested three days later. This is apparently around the time that CRP peaks after an immune challenge. And it can drop down to near-normal levels in the next 48 hours, so timing is everything.

I've noticed my CRP levels don't track my symptoms very well. When the level is really high, I usually feel bad, sure. But some "good" days its been as high as 14. On the other hand, sometimes when I've felt quite shit its only been 6 or 7.

I don't often get measurable fevers (although I do get sweats and chills and I'm not often measuring). And my platelet counts are normal so maybe it doesn't fit me so well.

I don't get measurable fevers now either. When I first got ill, my temp would rise 0.5 to 1 degree centigrade, but now, it doesn't seem to even do that.

The high platelet counts are what got me the referral to the Clinical Immunologist, but no-one seems to be able to make much of them, other than that they're a general marker that a lot of immune activity is going on. So they might not be a core feature at all. Just a useful visible marker of something else.

she suggests that some people just have a raised CRP, it's 'their normal'.

Yes, but you're not normal. You're really unwell!

And your heart rate sounds like a worry.

I wonder how much a CFS "schema" interferes with clinical judgement on these things? My GP did one blood test a few years ago, and found a CRP of 7, and said I probably just had an infection at the time, and it was nothing to worry about. He wrote off other visible signs in similar ways, like swollen glands, film on tongue. Yes, if you're a perfectly healthy person, this is probably what those things are. But given I'm so ill I'm unable to work, maybe in my case they're not just that?

The thing about the MECFS diagnosis is that doctors seem to forget what it is, and start inferring things - "Oh, that can't be part of the CFS because CRP isn't normally raised in CFS". They've forgotten that CFS is just a category you put people in who are very unwell but don't yet have a proper diagnosis. You can't start inferring that raised CRP is not part of the clinical picture of CFS so is never related, how could we know that? We don't even know what CFS is.

Edited for errors.

 

[arewenearlythereyet]

My symptoms:
- relapsing-remitting: my bad episodes feel like the flu, and can be brought on by overexertion, vaccination, or infection. The flu jab brings on four weeks of hell.
- severe physical fatigue on bad days (sort of a "crushed under a brick" feeling) and general sick flueyness
- "furry" mouth, sore mouth, sore throats, burning glands in neck, feeling hot all the time.
- very little cognitive impairment, but a bloody awful headache

and I get mouth ulcers and tachycardia when I am generally worse.

I think this is interesting. I get mouth ulcers (or the furry mouth is actually a more precise description). I’ve been tracking this vs other symptoms like tachycardia. There appears to be a loose connection between mouth ulcers and other things (high histamine type symptoms like wheezing, itchy eyes and hives) and it seems to get worse when I’m in PEM. But the mouth ulcer symptom seems to be more random than that ...has the doctor suggested what he expects the mechanics to be and was he able to describe whether you would need to be on the tablets permanently @Woolie ?