What to do when you can't tolerate any medications?

[Stark1]

Hi! So I suddenly got pretty severe MCAS earlier this year. I have a doctor who is very MCAS aware, but we have had basically no success treating it because I react to essentially all medications (including compounded ones with no fillers) and supplements, even in extremely tiny amounts. I am able to take one specific brand of levoceterizine, but am otherwise unmedicated. It only helps a but. So far I have tried:

Cromolyn Sodium
Ketotifen
Quercetin
Numerous other H1/H2 blockers
Montelukast
NAC
Alpha lipoic Acid
Doxepin
Budesonide (no major reaction but didn't seem to help at all)

Most of these I have tried multiple manufacturers AND compounded forms. My doctor seems to be running out of ideas, but I need something asap because I've lost a ton of weight and can eat very few foods.
Is there not something they can give me to make me more stable to I can tolerate one of these meds? Any advice would be appreciated

 

[Judee]

My doctor gave me a list of herbals that help with allergies, asthma and COPD.

One of the items on there was Khella. It's the botanical that Cromolyn Sodium was developed from. I haven't bought the seeds yet. It was more for my mom and she is tolerating the Cromolyn Sodium in the Nasalcrom form right now but if she didn't I would get the Khella seeds and find a way for her to take those say, in a tea or something.

Anyway, just an idea. There are others on the list as well like Nettle--which we do get some relief from and Butterbur--which we haven't tried yet.

If you are interested in the full list, I can try and take a pic and upload it. (Unfortunately, I don't have a scanner on my dinosaur printer. Sorry.)

 

[Learner1]

My doctor has had 4 patients on imatinub with goid results, in consultation with Dr. Afrin. Has your doc consulted with him or Dr. Weinstock?

 

[Gingergrrl]

@Stark1 You just described my situation in 2015 and the miracle med for me was Atarax. Have you tried it? My MCAS specialist also told me NOT to take NAC (which was on your list) and he said it was not safe with MCAS.

Ultimately it was high dose IVIG (Gamunex) that put my MCAS into remission by end of 2016 but I would not have tried it until I was already on Ketotefin (as mast cell stabilizer) and Atarax (as rescue med). I had to get both compounded b/c I had anaphylaxis to dyes.

 

[Stark1]

I have not tried imatinub, Atarax, or IVIG, although I would like to. I have considered a consult with Afrin, do people find that generally helpful? I had gotten the impression that his actual patients weren't that thrilled with the care they received, but I could be wrong.

Thanks all for your thoughts!

 

[kangaSue]

Is MCAS actually determined from pathology results or just suspected?

 

[Grigor]

This is me as well. Can't tolerate anything. The smallest crumbs of medicine, supps or food. Brrr.

I'll be following this thread as well. I wonder if it has something to do with the hyper sensitive micro glia.

 

[Stark1]

Is MCAS actually determined from pathology results or just suspected?

I did the blood and 24 hour urine tests but we did not capture any rise in mediators (I was not particularly symptomatic that day and was way too paranoid to try a high histamine food). My doctor says my symptoms are pretty classic mcas so we are basing diagnosis off of that and my improvement when given benadryl.

This is me as well. Can't tolerate anything. The smallest crumbs of medicine, supps or food. Brrr.

I'll be following this thread as well. I wonder if it has something to do with the hyper sensitive micro glia.

How do you manage yours currently? I am really struggling and pretty much house bound, which is very frustrating.

 

[kangaSue]

I did the blood and 24 hour urine tests but we did not capture any rise in mediators (I was not particularly symptomatic that day and was way too paranoid to try a high histamine food). My doctor says my symptoms are pretty classic mcas so we are basing diagnosis off of that and my improvement when given benadryl.

I have a significant problem with (idiopathic) gastroparesis (and have a gastric pacemaker implanted), tolerate very little of anything (foods, meds, supplements) similar to it being a mast cell problem, but don't have any elevated mast cell indicators either. Nor do any of these usual mast cell meds help in any way.

GI dysmotility (even "IBS" or functional dyspepsia) of itself can give rise to increased mast cell activity, without you actually "having a mast cell condition" as such, and something which I think applies to me because I can tolerate cheese and red wine, but all other "safe foods" I can count on one hand (and they are not safe foods as such either though, just the least worse options!)

I happen to have (idiopathic) Autonomic Neuropathy too and I can piece it altogether to form the view that it can all be down to just having autonomic dysfunction, for whatever reason.

 

[Gingergrrl]

I have not tried imatinub, Atarax, or IVIG, although I would like to.

Atarax comes in pill form (and is a first generation H1 antihistamine like Benadryl). You can get it from a regular or compounding pharmacy and I would think most doctors would have no problem with you trying it (vs. something like Gleevec or IVIG which would be harder to get insurance approval).

I have considered a consult with Afrin, do people find that generally helpful? I had gotten the impression that his actual patients weren't that thrilled with the care they received, but I could be wrong.

I have heard mixed things re: Dr. Afrin. I have never seen him in person but my main doctor did a phone consult with him in 2015 re: my case when I was in the hospital and his suggestions were very helpful at that time. They were short-term crisis intervention to stop the anaphylaxis that I was having until I was able to see my own MCAS doctor for the first time a few months later.

 

[taniaaust1]

I know from my experience that avoiding all chemicals may help a person to be a little less sensitive to mast cell issues.

I'm not diagnosed with a mast cell disorder but aware that I do have something going on there.. I had not had issues with oh what is it called.. where the slightest touch welts or leaves red marks on the skin for ages but when I had more exposure to anothers deodorants than i usually do a few weeks ago (I allowed a worker with things on into my home and thought I'd be okay if I just stayed away from her), that skin issue then flared up in me again and was present for half a day. I had not seen that symptom in a couple of years, I usually never allow anyone who has chemicals outgassing into my home.

So I seem to be controlling my more obvious mast cell symptoms to a good level by avoiding as much as I can as far as chemicals go. (That includes avoiding people who have chemical washing powder on their clothing).

 

[Stark1]

@kangaSue

That's really interesting. I hadn't heard of that. I'm really sorry to hear that you're dealing with that. It sounds terrible.

@Gingergrrl

I will definitely ask about Atarax, thanks! I hope I can get on xolair or gleevec or something before too long. I'm going in to talk to my doctor on Tuesday so hopefully we'll have a good plan

@taniaaust1

I definitely have been working on avoiding scents, which is a huge pain but has definitely helped a bit. I don't want to have to live in a bubble forever, though

 

[Grigor]

How do you manage yours currently? I am really struggling and pretty much house bound, which is very frustrating

I don't really. Remove everything I don't tolerate. Would love a fix....

 

[kangaSue]

I don't really. Remove everything I don't tolerate. Would love a fix....

If nothing else helps, consider Chronic Mesenteric Ischemia (CMI). You happen to live in the only country in the world that has a GI ischemia clinic, the Dutch Mesenteric Ischemia Study group, and these guys have the only test for detecting it (visible light spectroscopy) if you're like me and have non-occlusive CMI.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498801/

 

[Blake2e]

Hi! So I suddenly got pretty severe MCAS earlier this year. I have a doctor who is very MCAS aware, but we have had basically no success treating it because I react to essentially all medications (including compounded ones with no fillers) and supplements, even in extremely tiny amounts. I am able to take one specific brand of levoceterizine, but am otherwise unmedicated. It only helps a but. So far I have tried:

Cromolyn Sodium
Ketotifen
Quercetin
Numerous other H1/H2 blockers
Montelukast
NAC
Alpha lipoic Acid
Doxepin
Budesonide (no major reaction but didn't seem to help at all)

Most of these I have tried multiple manufacturers AND compounded forms. My doctor seems to be running out of ideas, but I need something asap because I've lost a ton of weight and can eat very few foods.
Is there not something they can give me to make me more stable to I can tolerate one of these meds? Any advice would be appreciated

Then you would be in the same boat as me. I have allergic reactions to every food (but white chicken and non-fortified white rice) and every single drug I've ever tried regardless how it is compounded/formulated and of how it enters the body. And in my case, and it sounds like in your case too, when I react to a drug it stops working.

I dropped to 4% body fat, from being a lean and muscular 145 to a sickly and dying 109 lbs in the span of 4 months. Corticosteroids and Xolair could increase your ability to tolerate other drugs and make them work as well. Though the steroids options seems to not be working for you, Powerful immuno-suppressants Rheumatologists and Hem-oncs could prescribe would be your next step. Its what I did and things have been much better since.

 

[Stark1]

@Blake2e thanks for your thoughts. I've read your MCAS thread with great interest. I've been doing a ton of research and I intend to find a way to put this into remission and get back to my life. I see you're on a keto/meat diet, but do you still have a lot of food sensitivities?

 

[Blake2e]

@Blake2e thanks for your thoughts. I've read your MCAS thread with great interest. I've been doing a ton of research and I intend to find a way to put this into remission and get back to my life. I see you're on a keto/meat diet, but do you still have a lot of food sensitivities?

I did that diet for a month back in Jan 2019 but I wasnt well enough to maintain it (fat intolerance/allergy). No noticeable changes in that month and I still have all my food allergies (but mostly suppressed by Rituxan, Xolair and, when I need it, steroids. Even on days that are horrible like never ending diarrhea, my sensitivities on the whole are still significantly far less worse than they used to be pre-Rituxan.) I'm restarting that diet again very soon. I think 4-6 months is a good time frame to know whether itll work for me or not.

 

[Hd-x]

but I need something asap because I've lost a ton of weight and can eat very few foods.

I lost 14kg, had much hassle with food allergies and if I was eating anything it triggered bloated Gut + nausea , at last I was still able to eat some rice powder. In my case Cyproheptadine + Diazepam + Ondansetron helped.
After few weeks I was going off from Diazepam/Ondansetron and 8-12mg Cyproheptadine was alone able to controll my bloated Gut, nausea + food allergy problems, but need to combine it with another H1 Antihistaminica.

 

[Stark1]

@Hd-x Do you still take Cyproheptadine? Thanks for the suggestion!

@perrier Not trying to be rude at all but if you could make a separate thread for your own questions I'd appreciate it, mate

 

[perrier]

@Hd-x Do you still take Cyproheptadine? Thanks for the suggestion!

@perrier Not trying to be rude at all but if you could make a separate thread for your own questions I'd appreciate it, mate

don't worry, no one has replied anyhow, mate.