Current fav MCAS med: Phenibut

[Learner1]

But if enough people say in this thread they really want me to post studies to support use of Phenibut for MCAS then I'll do it.

Not sure why you need to have X number of people tell you to post studies. Phenibut is a potentially dangerous substance for people, so it is important to weigh the risks vs the benefits in making a decision.

As Gingergrrl and I have noted, we have seen nothing to justify the claim that phenibut is a mast cell stabilizer. You seem to be saying you haven't with her, but think it does in your case, which is helpful for you. But why? Do you have some specific genetics or antibody that causes you to respond in such a way?

As I mentioned, I took phenibut for a limited time, also, and it did help my sleep which my doctor prescribed it for, but I got off it as soon as I could as I was aware of the risks. And, I didn't feel any positive MCAS effects.

If there is any research justifying its use for MCAS, it would be great if you could point us all to it.

Thanks!

 

[Learner1]

Phenibut is not without its risks as Ive mentioned (and provided links) several times in this thread. Comparing it to THC and alcohol is a bit ridiculous as those only cause more problems.

It was not a comparison. People have run into trouble and been hospitalized when taking phenibut AND alcohol or THC. Given that many people use medical marijuana, and many people drink alcohol, this risk is good to know.

I dont know what kind of doctor prescribed it (last I checked it was only a prescription drug in some Eastern European countries) but he "prescribed" it incorrectly. For it to put you to sleep you need to take large doses aka abuse it and if you do that you should fully expect problems as that not the proper use for this.

This is the product that was prescribed:

https://www.pureformulas.com/kavinace-60-capsules-by-neuroscience.html

The FDA apparently is scrutinizing phenibut:

https://www.fda.gov/inspections-com...olutions-inc-dba-neuroscience-576310-04102019

 

[Hd-x]

Phenibut ( medical brand name Noofen / Anvifen) is used as medical drug for short term treating asthenic, anxious-neurotic states, ticks, Meniere's disease
Medical dosage for those diseases are 250-500mg (max. 3x times daily)
Dependency may happen in few cases and in case of high dosages + prolonged administration, hepatotoxicity may be possible (fatty liver). Well, but if considering it is a medical drug in some countries, the side effects are small as so long it will be used in medical dosages for a short time.

Phenibut is sometimes abused as party drug and there are several cases where ppl. been hospitalized - but we need to keep in mind most off these folks usually didnt took the drug for treating any diseases in medical manner.

As Gingergrrl and I have noted, we have seen nothing to justify the claim that phenibut is a mast cell stabilizer.

Yes, there are no studies around - but even if such drugs dont have any mast cell stabilizing effect, it may obvisously have any indirectly effect on the disease --> stress is well known to worsen MCAS and such drugs reduce stress levels.


I had a hard time with nausea, heartburning + flushes after eating, skin rashes
-even cortisone didnt really fix the skin rashes and stock MCAS protocolls with all those newer H1 Antihistaminica, H2 Ranitidin, chromolyn, quercitin didnt do anything great for me. (especially quercitin makes my gut much more worse)
The doctor put me finally under old cheap Cyproheptadine + LD Xanax and my high Tryptase levels went down to reference levels, nausea gone and all the skin rashes gone, no longer flushes/heartburning after eating
- even my food intolerances a lot better. ()


The current medicine can only meassure around 10-12 or so mastcellmediators, but there is way more stuff then just only Histamine, Leukotriene, Tryptase, Heparine , Serotonin (?) that Mastcells can release. Imo, hard to judge depending on the case if this or that may help or not.

 

[Learner1]

I have a friend who has used phenibut for sleep. He has been frantic when he has run out of it and realizes that he is addicted to it but has a hard time facing giing through withdrawal.

You're right, sometimes the standard MCAS meds don't work. The attached lists many other choices.

 

[Hd-x]

if ppl. use it for better sleep if it is avaible as unregulated supplement is at last "No-Label" use.
Any "No-Label" may have some riscs.

The problem with the Afrin drug sheet is that it is primary for MCAS specialists,
if you give any local doctor several pages and/or listings with expensive drugs.- sometimes doctors will not try to treat MCAS.

In Germany the MCAS basic protokoll look like this:
H1 Antihistaminika: 2-3Gen like Deslortan, Fexofenadin and so on
H2 Antihistaminik Ranitidin -> or PPI
Mastcellstabilisators: Ketotifen, Chromolyn acid (Pentatop)
Mastcell damping agents: Diazepam, Rohypnol
Vitamin C

 

[Learner1]

The basic list here is similar.

I'm allergic to every antihistamine I've found. They all contain ALLERGENS. So, I either get a $400 bottle of compounded fexofenadine or find something else that works.

I had not seen cyproheptadine, though. Says it is sedating, promotes drowsiness, and It is an appetite stimulator with an additional anticholinergic, anti-serotonergic, and local anaesthetic properties. Given that I NEED more acetylcholine, not less, I'm deficient in serotonin, and I don't need drowsiness or weight gain, it doesn't look like the drug for me.

Most of my symptoms are intestinal. I take 1.6-2g of cromolyn sodium in oral liquid ampule form, which did much to relieve my excruciating intestinal pain. That's 16-20 ampules per day. Less doesn't help. And compound pills don't help. The stuff isn't very bioavailable.

Curcumin has been a wonder drug for me. It's on Afrin's list.

And phenylbut is marketed here in the US as a sleep supplement:

Kavinace by NeuroScience combines powerfully calming ingredients that may be effective at addressing the symptoms that come from stress‚ irritability‚ anxiousness‚ and trouble sleeping. This formula includes 4-amino-3-phenylbutyric acid‚ a GABA derivative.

 

[Hd-x]

Cyproheptadine is a dual H1 and serotonin-receptor antagonist, the drug is mentioned in the Mastcell disorder paper from Theoharides, as drug for patients with diarrhea, flushing, headaches - but the drug also works very well for nausea. It was in past prescribed ppl. with wasting syndroms like anorexia, bulimia.

Nowadays Cyproheptatine is still used for utricularia if new Gen Antihistaminika dont work for whatever so reasons. Xanax interestingly works also for treating allergic utricularia (there are studies around this), it interacts somehow on H1, muscarin, paf receptor

Most of my symptoms are intestinal. I take 1.6-2g of cromolyn sodium in oral liquid ampule form, which did much to relieve my excruciating intestinal pain. That's 16-20 ampules per day. Less doesn't help. And compound pills don't help. The stuff isn't very bioavailable.

i also used cromolyn sodium before (as pills) and it helped somewhat, but it was pretty expensive up to 8 capsules / day. Now, I still need 2-3 cheap Cyproheptadin pills and it improved my food allergies, bloated gut way more.
And yes, it is an old + sedating drug, I dont know the reason but in combination with LD Xanax it didnt sedate me that much. I had been prescribed Benzos some years ago, Xanax helped me to get less heartburn from some foods and it shorten to some degree my PEM crashes,
If I eat foods like rice or some vegetables = I dont get any heartburn, bloating - but dont wanna eat each day rice and depending on the foods, I took additionally 0.25mg Xanax. It always works the same low dosage to fix this strange food/heartburn problem, I dont notice any real mood changes or "feelings of well beiing" from such Benzo dosages, I guess this may be the reason that I never had any addictive problems with this drug class,
My Serotonin levels were always in the lower normal range - I feel fine within this range, but feel worst and "overpaced" with high Serotonine levels, I cant tolerate any SSRI. If ppl. feel better under SSRI and/or higher Serotonine levels, Cyproheptadine should not be taken if it acts as antagonist.

 

[Learner1]

Agreed.

This is a new article put on anticholinergic drugs leading to dementia:

https://www.madinamerica.com/2019/07/anticholinergic-psychiatric-drugs-linked-50-increase-dementia/

The liquid form of cromolyn is more bioavailable.

 

[Hd-x]

4years ago the doctors put me under Sertralin, this was the worstest drug ever .
It was so horrible that I thought I was going nuts, Today I know the reason, SSRI, neuroleptica, ß-blockers are highly contra.indicated if you have MCAS,

But psychiatric drugs can also slam down healthy persons pretty quickly,
My neighbour went for still 8weeks into
psychiatry after the husband died - she thought it would be a good place to "cure" her sadness,
I visited her in the psychiatry - it was like a bad B-movie,
reinforced doors, barred window. -just like in jail.
After still 4 weeks she was looking like a zombie from Walking Dead, you told her anything and 10minutes later she hadnt known what we were talking about ^^
I dont know if it was the combination or if a single drug class slammed her that much down.
(they filled her up with antidepressants, benzos and neuroleptica)

After she leaved the psychiatry, she had a hard time - problems with withdrawl, insomnia and getting her life sorted. This opens my eyes, to be carefully with any psychiatric drugs and always weigh benefits vs risks.
You should always have the controll over the drugs and not any drugs controlling you.

The liquid form of cromolyn is more bioavailable.

Unfortunatly, the liquid form isnt availible in my country.
cromolyn pills cost me 250$/month and thats a lot, i need other stuff for my CFS, too.
Cyprohepadine/Xanax didnt cost any buck, the insurance pays this stuff,

 

[panckage]

An excellent mast cell stabilizer. Potent at small doses and very well absorbed. And since my body somehow deactivates drugs proportionally to how sensitive my MCAS is, it’s great, as I don't have to take monstrous dosages for the drug to work. It’s also one of my favorite nootropics. Gives a calm energy and focus. Pure mental stimulation and quiets/relaxes the body.

Not something that should be used daily but great for a 2-3 days per week, any more than that will lead to physical/mental dependency. Graduated from school and just got 2 jobs (part time and full time) and it’s been great for work (currently 3x/wk soon will be 5 days/wk).

I've been using phenibut once every 3 days or so, dosing 1-1.5g for 3 years now I think. I have ME (not MCAS) and I find it is nice, helps me to feel normal and helps sleep usually but not so much other than that.

My friend, are you planning to take 3-5g 5 times a week? From anecdotal reports I don't think that will end well. Those are very large doses and too often. Tolerance and withdrawal will be waiting. I think I have read people some did ok with daily phenibut, well cycling it but this was at a much lower dose, 250mg or so

 

[Hd-x]

As so long MCAS didnt worsen, the same dosage should work if a drug is capable to modulate mastcell affecting receptors . A(2B) and so on, cause mast cells to release pro-inflammory stuff; drugs like Diazepam inhibitory A(2B) activity = thus less IL-8 secretion. Even if a drug has dependence potential, there should be no drug tolerance on such receptor interactions imo. Tolerance problems are usually GABA Receptor related, it can be circled around by using low dosages, but requieres the drug works in low dosages.
GAD can be treaten with 1.5g Phenibut and if 5g for MCAS are requiered it seems not be that effective for this disease. (MCAS Benzodiazipine dosages are usually a lot lower then GAD dosages)

MCAS has 0% remission rate
there is no cure and if drugs are necessary a whole life long,
a drug dosage should be within a range where it can be taken permanently without doing too much harm.
There is risc that high dosages could damage the liver over the years.

 

[Blake2e]

Not sure why you need to have X number of people tell you to post studies. Phenibut is a potentially dangerous substance for people, so it is important to weigh the risks vs the benefits in making a decision.

As Gingergrrl and I have noted, we have seen nothing to justify the claim that phenibut is a mast cell stabilizer. You seem to be saying you haven't with her, but think it does in your case, which is helpful for you. But why? Do you have some specific genetics or antibody that causes you to respond in such a way?

As I mentioned, I took phenibut for a limited time, also, and it did help my sleep which my doctor prescribed it for, but I got off it as soon as I could as I was aware of the risks. And, I didn't feel any positive MCAS effects.

If there is any research justifying its use for MCAS, it would be great if you could point us all to it.

Thanks!

The vibe Im picking up from you in this thread is one of being close-minded and even a bit combative for some reason. Essentially I get the sense I'd be wasting my time drudging up a researched explanation especially since no one else is asking for it. The key to what makes Phenibut work is that it is a GABA analogue. Primarily working on GABA-B receptors and at higher doses at GABA-A receptors as well. Benzos are considered MC stabilizers and they operate as GABA-A receptorsagonists. MC stabilization occurs with both A and B receptors.

GABA-mediated inhibition of the anaphylactic response in the guinea-pig trachea.
Targeting the immune system with subtype-selective GABAA receptor modulator to alleviate asthma symptoms.
Suppressive effect of gamma-aminobutyric acid (GABA-B) on histamine release

It was not a comparison. People have run into trouble and been hospitalized when taking phenibut AND alcohol or THC. Given that many people use medical marijuana, and many people drink alcohol, this risk is good to know.



This is the product that was prescribed:

https://www.pureformulas.com/kavinace-60-capsules-by-neuroscience.html

The FDA apparently is scrutinizing phenibut:

https://www.fda.gov/inspections-com...olutions-inc-dba-neuroscience-576310-04102019

I support intelligent use of drugs bringing up acts of idiocy other people commit is insulting to everyones intelligence. If you have MCAS and youre drinking alcohol then G-d be with you.

I've been using phenibut once every 3 days or so, dosing 1-1.5g for 3 years now I think. I have ME (not MCAS) and I find it is nice, helps me to feel normal and helps sleep usually but not so much other than that.

My friend, are you planning to take 3-5g 5 times a week? From anecdotal reports I don't think that will end well. Those are very large doses and too often. Tolerance and withdrawal will be waiting. I think I have read people some did ok with daily phenibut, well cycling it but this was at a much lower dose, 250mg or so

About 3 grams each day, 3 days (MWF) a week. My MCAS makes me highly resistant to drugs and my body doesnt metabolize drugs (as evidenced by all my blood tests). I've been doing this for probably 2 months now. I took 4 days off just recently as I only take this when I work and I was off for that time. I've dealt with withdrawal from this in the past (super early days of my MCAS where this was the only thing that helped and I took it for something like 2 weeks straight) so Im well aware of whats its like. And I show zero signs of any of that. My large dose is due to tolerance but it's much more due to drug resistance my MCAS endows me with, the unquestionable worst part of my MCAS.

I'm phasing it out for a month or 2 to reset tolerance and let my Xolair reset my resistance. And phasing in Picamilon.

 

[Learner1]

You seem to have a very unique biochemistry and presentation of your illness and I applaud your efforts to personalize your protocol for your needs. If it's working for you and not harming you, fantastic. Thank you for further educating us on it. I believe I mentioned I have also taken it, and it worked well for me, but the risks caused me to seek a different way of managing the issues I was taking it for.

My purpose in bringing up the risks is that everyone else on this site is not exactly like you, and if they run out and buy some and take it, they may end up having a very different experience than you, and end up sorry they started it.

We each have to be curious about our own illnesses, and the function and pros and cons for each thing we put into our bodies and the interactions between different treatments. It sounds like you are, and that's great!

 

[Blake2e]

You seem to have a very unique biochemistry and presentation of your illness and I applaud your efforts to personalize your protocol for your needs. If it's working for you and not harming you, fantastic. Thank you for further educating us on it. I believe I mentioned I have also taken it, and it worked well for me, but the risks caused me to seek a different way of managing the issues I was taking it for.

My purpose in bringing up the risks is that everyone else on this site is not exactly like you, and if they run out and buy some and take it, they may end up having a very different experience than you, and end up sorry they started it.

We each have to be curious about our own illnesses, and the function and pros and cons for each thing we put into our bodies and the interactions between different treatments. It sounds like you are, and that's great!

I disagree with this being unique to my biochemistry. Plenty of others have reported the same results with phenibut and drugs that operate in similar fashion. Plenty of hard science to support the case for GABA for MC stablization.

Youve only tried it once for sleep. I wouldnt count that as a proper experience for its for MC activation/allergies. Youre coming in with strange biases and smarminess. I am always blunt and I've made all the risks apparent in this thread (assuming you didnt just skim my post) so you havent said anything I havent already said. Phenibut is nothing compared to all the immunosuppressants Ive talked about trying in other threads that you had no problem with.

Edit: your response confirms I wasted my time looking up studies for you and your close-mindedness about the topic. Its cool if you just dont like a class of drug for whatever personal reason, thats very understandable (no one could ever convince me to try weed), but your approach to it here simply leaves a bad taste in the mouth. Please dont try to pat my head after being insulting you already come off smug in this thread.

 

[Hd-x]

Benzos are considered MC stabilizers and they operate as GABA-A receptorsagonists.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598916/
There are more studies around rohypnol + diazepam and their medical usage for mcas.
There are studies proofing some benzos can reduce high interleucine release triggered by mastcell activation.
There are studies in the allergologicy journal around xanax and treating allergic diseases.
Lorazepam is used together with Ondansetron to treat mcas triggered nausea.
(imo diazepam works better for it)

Benzos are working for MCAS, so yes it sounds somewhat logical Phenibut may work as well.
The point I still dont get on this, why do you pay for any non pharma grade Phenibut if Benzos are usually covered by insurance??

 

[Chelby]

Phenibut is illegal in Australia.

 

[Learner1]

The US FDA has taken action against phenibut:

https://www.fda.gov/food/dietary-supplement-products-ingredients/phenibut-dietary-supplements