Has anyone recovered from MCAS

[Aerose91]

It seems like it can have many triggers; infection, toxins, trauma, food etc..

Has anyone had success in healing this by treating underlying factors? It seems as though there is always a trigger and that MCAS doesn't just form on its own

 

[Wonkmonk]

I think @Gingergrrl is in long-term remission for a while with IVIG and (more recently) Rituximab. The trigger as I remember was toxic mold exposure.

 

[Aerose91]

IVIG. Damn, i hear that helping so many ppl

 

[Ema]

I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.

There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.

Mostly I think we just manage the symptoms the best we can until it goes into remission.

 

[Aerose91]

I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.

There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.

Mostly I think we just manage the symptoms the best we can until it goes into remission.

So you didn't do any particular therapies? You just slowly recovered with time?

 

[kelly8]

Hi @Aerose91 ,
I was diagnosed with mcas. However I am now questioning that diagnosis because after about 5 years I am no where near where I was then. I do still take loritadine and ranitidine. However, some of the other meds didn't seem to work for me. Which is making me question the diagnosis.

At one point I could only eat 6 foods and was needing to live in a bubble because scents and environmental stuff was causing me to break out in hives. I spent a long time detoxifying my environment and trying to let my body heal before I started working foods back in. When I did it was the smallest amount, one at a time. In case I had a reaction.

I still can't eat gluten. But I've been able to work most other things back in. I also work really hard at keeping my inflammation down if I can. I also did a major gut cleanse recently and have noticed more improvements with that.

So I'm slowly digging out of the hole... Again not sure if I actually had mcas but was diagnosed with it.

 

[Gingergrrl]

I think @Gingergrrl is in long-term remission for a while with IVIG and (more recently) Rituximab. The trigger as I remember was toxic mold exposure.

Sorry, I did not see this thread or get an e-mail alert that I was tagged! I developed severe MCAS in 2015 which ultimately resulted in me having anaphylaxis to all food but water and being hospitalized. I was on IV Benadryl and then Benadryl injections and a boat-load of meds which I had to take 30 min before eating about 4-5 foods. I also had severe reactions to odors/smells.

I believe that I had sub-clinical MCAS for most of my life and matched on about 35+ of the 50 symptoms listed by the Masto Society (even obscure things like being allergic to aspirin, being allergic to Yellow Dye #5, having unexplained bruises plus all the major symptoms). We believe the final trigger to my immune system was several years of toxic mold exposure in my former rental as @Wonkmonk mentioned.

Once I started high-dose IVIG, the MCAS went into remission. It went into remission from IVIG alone, almost a year prior to starting Rituximab. The Ritux put the rest of my symptoms into remission but it was the IVIG alone that put the MCAS into remission. My MCAS doctor said that IVIG put many of his prior patients into remission so he was not at all surprised by it (even though I was)!

I stopped my entire MCAS med regime and no longer take any MCAS meds 30 min prior to eating. Because I am now done with IVIG and in the process of tapering off Cortef, I continue to take one set of MCAS meds in the evening to be safe. One set for me used to be nine different meds but it is now four: Zyrtec, 1/2 Pepcid, Ketotifen, and Quercetin. I've had days that I have not taken the set of 4 meds (at all) and had absolutely no problems. But b/c of the Cortef taper and stopping IVIG, I am continuing to take them and see no down-side (and prefer to be safe than sorry).

I continue to avoid the foods and meds that I was allergic to life-long, and my MCAS doctor told me that for as long as I live, I should avoid iodine based IV contrast dyes. I also continue to avoid FD&C food dyes (especially Yellow #5 or "Tartrazine" which caused my absolute worst anaphylaxis reaction). I have no other food restrictions but continue to limit the highest histamine food offenders. If I was at a special event and they were served, I can eat them, but in general, I prefer not to put the extra stress on my body if not needed.

So while I am cautious b/c I never want to re-live the horror of 2015, I consider myself to be in remission from MCAS. I will never say "cured" b/c I believe it is possible for my symptoms and allergic reactions to come back, especially if I were to be exposed to toxic mold again in the future.

 

[keenly]

It seems like it can have many triggers; infection, toxins, trauma, food etc..

Has anyone had success in healing this by treating underlying factors? It seems as though there is always a trigger and that MCAS doesn't just form on its own

Briefly, whilst on Align my MCAS completely went. That shows me this problem comes from the gut.

 

[Ema]

So you didn't do any particular therapies? You just slowly recovered with time?

I did lots of treatments, but yes, the worst of the MCAS for me was in 2007-2009. I fully crashed in late 2009 but the MCAS reactions were milder at that point than the other MECFS symptoms, long before I’d had any of the thousands of treatments I eventually tried.

So, I do tend to think relapse and remission is normal and that it is possible for severe flares to reverse without aggressive treatment as well.

 

[MorganGal]

@Gingergrrl would you be willing to share who your doctor is?

 

[Gingergrrl]

@Gingergrrl would you be willing to share who your doctor is?

I will send you a PM.

 

[kskiska]

I will send you a PM.

@Gingergrrl could you Pm me your doc also? If you didn't mind sharing? Thank you.

 

[Gingergrrl]

@Gingergrrl could you Pm me your doc also? If you didn't mind sharing? Thank you.

I can PM you but I have confirmed (since writing that prior post) that my MCAS doctor is no longer taking new patients. He works at three hospitals and is planning to retire in the next year (which is a bummer). I tried without success to refer other patients to him but he is no longer seeing new patients at all

 

[Critterina]

I would say that I am also in remission. I only take one Zyrtec at night now and have no food restrictions to speak of.

There wasn’t any one specific treatment I could say helped me the most though. I also did IgG replacement with Hizentra but the worst of the reactions were over by then anyway.

Mostly I think we just manage the symptoms the best we can until it goes into remission.

Ema, If there was a "super like" I would put that on your post.
I just got a doctor who thinks I have MCAS - evaluation ongoing.
Much love your way!

 

[hb8847]

Just bumping this thread, wondering if there are any more MCAS patients who have recovered?

@Gingergrrl your post about IVIG was especially interesting. I just had a consultation with my MCAS doctor yesterday but his focus is just treating MCAS with mediators (like antihistamines, ketotifen, sodium cromolyn), I've not heard IVIG mentioned before. Were you on these mediators too? And did the MCAS give you ME/CFS, and are you in remission for that now too?

 

[Learner1]

Just bumping this thread, wondering if there are any more MCAS patients who have recovered?

@Gingergrrl your post about IVIG was especially interesting. I just had a consultation with my MCAS doctor yesterday but his focus is just treating MCAS with mediators (like antihistamines, ketotifen, sodium cromolyn), I've not heard IVIG mentioned before. Were you on these mediators too? And did the MCAS give you ME/CFS, and are you in remission for that now too?

My MCAS is much improved through working on mast cell drivers, autoimmune dose IVIG and Rituximab.

You might take this case study to your doctor.

 

[hb8847]

Thanks @Learner1 .

What do you mean by "working on mast cell drivers"? Is this with mediators like histamine? Do you mind me asking which medications worked if any?

Also did the treatments you mentioned help with CFS too?

 

[Learner1]

What do you mean by "working on mast cell drivers"? Is this with mediators like histamine? Do you mind me asking which medications worked if any?

There are several health problems that tend to increase mast cell degranulation / mast cell activation.

These include:

• Oxalates and high oxalate foods
• Leaky gut
• Depleted B6 and other methylation nutrients
• Lyme and other infections
• EMFs
• Plastics
• Pesticides
• Iron overload
• Sugar
• Low DAO enzyme
• High estrogen

I was on ketotifen, montelukast, quercetin, and cromolyn sodium for symptoms. High dose IVIG, and then Rituximab vastly reduced my symptoms and these days, I just take quercetin daily, and then add ketotifen if I'm exposed to things I'm allergic to, like birch pollen or grass pollen.

Also did the treatments you mentioned help with CFS too?

Yes.

You might find the attached interesting.

 

[hb8847]

Thank you @Learner1 I'll have a look at your links.

I'm with a UK based doctor right now who by all accounts is good, but we're going very slowly on the medications - he got my to try antihistamines for 2 months (loratidine and famotidine) but these didn't help, so I'm just about to start Ketitofen and then reassess after another 2 months.

All seems incredibly slow :/ is this the standard approach? I'd like to bring up with IVIG and Rituximab with him too, this thread is the first I've heard of any of these things mentioned.

I'd also love to address whatever is underlying it, I know I have gut dysbiosis, SIBO, and I've recently tested positive for high mycotoxins, no doubt that one or all of these is contributing to MCAS but I simply cannot tolerate any treatment at the moment, anything like probiotics and it triggers my MCAS.

 

[Learner1]

I'm with a UK based doctor right now who by all accounts is good, but we're going very slowly on the medications - he got my to try antihistamines for 2 months (loratidine and famotidine) but these didn't help, so I'm just about to start Ketitofen and then reassess after another 2 months.

All seems incredibly slow :/ is this the standard approach? I'd like to bring up with IVIG and Rituximab with him too, this thread is the first I've heard of any of these things mentioned.

That actually seems quite enlightened for a UK based doctor! The typical things the best in the US do or to put patients on both an H1 and an H2 antihistamine as well as a mast cell stabilizer or two or three.

The different H1 antihistamines seem to work differently in people, I never got any help from loratadine or cetirazine. I was helped by Allegra, but as with all FDA approved antihistamines in the US, It contains milk products so I had to have it compounded for a $400 bottle of pills. Ketotifen is actually much cheaper to compound.

So, the doctors pick between different H1 antihistamines and if one doesn't work then try another. The famotidine is one of two H2 antihistamines, the other being ranitidine, but there have been ingredient problems with ranitidine so the famotidinei s a logical choice.

Your doctorctor has not taken the next logical step of adding mast cell stabilizers, which would be quercetin, cromolyn sodium, had a bunch of others, but those are the most common. I've taken up to 2 g of quercetin a day, and at one point was on 1.6 grams of cromolyn sodium as well. Mast cell expert Theo Theoharidas developed a botanical mast cell stabilizing product called Neuroprotek which some people around here take and have good luck with. My doctor also prescribes montelukast, a leukotriene inhibitor. It also depends on which mast cell chemicals get released in your system.

There are definitely some more heavy-duty drugs, the most expensive and exotic being imatinib, which goes for $128,000 a year here in the US, but there are other approaches as well.

For acute mast cell problems, a benzodiazepine like lorazepam can be useful, In addition to more common drugs like Benadryl, oral, injectable, or IV.

I've attached 2 documents to share with your doctor, one from expert Lawrence Afrin on drugs for MCAS, and the other a case study of a woman dramatically helped by IVIG.

I'd also love to address whatever is underlying it, I know I have gut dysbiosis, SIBO, and I've recently tested positive for high mycotoxins, no doubt that one or all of these is contributing to MCAS but I simply cannot tolerate any treatment at the moment, anything like probiotics and it triggers my MCAS.

There are definitely a number of factors that increase one's mast cell reactivity. Working on reducing each one of those that you have is extremely useful.

Best wishes.