Has anyone recovered from MCAS

[MCASMike]

I've been doing well lately, but in the mornings (last week or so) I've had severe runny nose, so I may try Fexofenadine rather than Loratidine. Even when I wear a mask it doesn't seem to help much if at all. As the day goes on it does seem to get better and better. Otherwise, the other symptoms are a lot better. I haven't used the Ketotifen eye drops for a long time now, though I do get a little tearing or irritation once in a while. I do very little physically, so that could be a major factor for some people (especially for those who do strenuous exercise or don't get much sleep; I usually get at least 9 hours of sleep a night).

 

[hb8847]

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.

Yes the next one (before Ketotifen) was supposed to be Sodium Cromolyn but he mentioned some patients had struggled to get their hands on it so he suggested Ketotifen first.

I bought some Quercetin the other day but it doesn't seem to be doing much so far. Maybe I need to give it longer.

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

So to date I've tried 4 antihistamines: Cetirizine, Loratidine, Famotidine and Ranitidine. None have had much of an effect on my main symptoms, but my food intolerances are pretty severe and I had to completely eradicate Histamine a long time ago, so perhaps that's why I don't get much benefit from them.

That actually seems quite enlightened for a UK based doctor!

Well that's encouraging. And yes he's supposed to be one of the authorities on the MCAS in the UK, his name is Professor Seneviratne? I've gotten in touch with a few other immunologists here regarding MCAS and they all seem to defer to him.

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

Blimey, tad out of my price range. Is that Gleevec?

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.

Thanks a lot, that's really helpful.

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.

The only time I've come across his name before was when a nutritionist mentioned Electro-magnetic frequency as a MCAS trigger and referenced Theo Theoharidas. This set off alarm bells for me as I'm pretty anti anything that sounds like pseodo-science - is this guy respected in the MCAS community though? And do people generally think EMF triggers might be a thing?

 

[Gingergrrl]

@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?

I apologize for my slow reply! I did try every mast cell mediator known to man back in 2015 & 2016 (prior to starting IVIG). The H1 blocker that served as my rescue med was Atarax. Many people use Benadryl as their rescue med but Atarax always worked better for me. Although I did use IV Benadryl in the hospital in 2015 when I had out of control anaphylaxis (and also used IV Benadryl as a pre-med for Rituximab).

The mast cell stabilizer that worked best for me was Ketotifen. I did not do well w/any form of Cromolyn (but many people do). I tried literally everything back in 2015 & 2016 and at one point I was taking 8-9 different meds just to be able to eat a few bites of food. Luckily this all changed for me w/IVIG and my MCAS went into remission. I have not had anaphylaxis since 2016. At present I still take 1 mg of Ketotefin per day (vs. I used to take 4 mg per day). I also take Quercetin (as a natural antihistamine). If I need it, I take Zyrtec (but on most days this is not the case). And if I have a more severe allergic reaction to something, then I take Atarax (but at this point, that is only a few times per year). I hope this helps!

Edit: Also I carry an EpiPen in my purse and wear a Medic Alert bracelet as a precaution (and I recommend this to anyone who has had anaphylaxis even if you are in remission).

 

[hb8847]

No worries at all, thanks for replying!

I tried literally everything back in 2015 & 2016 and at one point I was taking 8-9 different meds just to be able to eat a few bites of food. Luckily this all changed for me w/IVIG and my MCAS went into remission. I have not had anaphylaxis since 2016.

That's amazing to hear, I'm so glad for you you managed to find something, it sounds like torture what you were going through.

I myself don't have much of the anaphylaxis stuff (unless I eat histamine foods), my symptoms from food are mainly CFS and things related to that, like aching joints, sleepiness, cognitive symptoms etc. Did you get much of those sort of reactions to things too? And is your CFS in remission as well as your MCAS?

 

[Gingergrrl]

That's amazing to hear, I'm so glad for you you managed to find something, it sounds like torture what you were going through.

Thanks and it was truly torture at that time.

I myself don't have much of the anaphylaxis stuff (unless I eat histamine foods), my symptoms from food are mainly CFS and things related to that, like aching joints, sleepiness, cognitive symptoms etc. Did you get much of those sort of reactions to things too? And is your CFS in remission as well as your MCAS?

I did not have joint pain, sleepiness or cognitive symptoms and the allergic reactions to food caused me a more traditional allergic reaction/anaphylaxis either instantly or within about an hour from eating the food. I do not have ME/CFS but ended up with several other autoimmune diagnoses in addition to the MCAS (POTS, LEMS/muscle weakness, and Hashimoto's/thyroid). Now I am having some other endocrine problems, too. All doctors told me that I had CFS for several years until I did all of the autoantibody testing.

 

[xploit316]

@Gingergrrl Are the antihistamines you use (Ketotifen, Zyrtec, Atarax) all Vasoconstrictors?

 

[Gingergrrl]

@Gingergrrl Are the antihistamines you use (Ketotifen, Zyrtec, Atarax) all Vasoconstrictors?

Ketotifen is a mast cell stabilizer, Zyrtec (Cetirizine) is a 2nd generation H1 Blocker/antihistamine, and Atarax (Hydroxyzine) is a 1st generation H1 blocker/antihistamine. I have no idea if any of them are also vasoconstrictors?

 

[Strawberry]

I haven't used the Ketotifen eye drops for a long time now, though I do get a little tearing or irritation once in a while.

You might want to start back up. I had eye drops that helped my psoriasis. Dr Kaufman thought I meant I was putting the drops on my psoriasis, but no I was using them in my eyes and it also stopped psoriasis itch. (Ps I still need to respond to you re ketotifen o the other thread)

So to date I've tried 4 antihistamines: Cetirizine, Loratidine, Famotidine and Ranitidine. None have had much of an effect on my main symptoms, but my food intolerances are pretty severe and I had to completely eradicate Histamine a long time ago, so perhaps that's why I don't get much benefit from them.

It definitely sounds like you will be better off on mast cell stabilizers. And chromolyn?

 

[hb8847]

It definitely sounds like you will be better off on mast cell stabilizers. And chromolyn?

Thanks for the advice. Yes my Doctor has prescribed me Ketotifen, I should start that on Monday.

My understanding was that Sodium Cromolyn had been the next on the list of medicines to try, but some of his patients had had difficulty sourcing it so he went with the Ketotifen for me in case I did too.

I can't lie though, I've been getting pretty impatient. His plan seems to be to try a new medication every 2 months, but my symptoms are pretty bad and part of me is just thinking about getting the medicines online via a foreign pharmacy and just doing it myself quicker :/ I'm not at that point yet but it's really tempting.

 

[xploit316]

You might want to start back up. I had eye drops that helped my psoriasis. Dr Kaufman thought I meant I was putting the drops on my psoriasis, but no I was using them in my eyes and it also stopped psoriasis itch. (Ps I still need to respond to you re ketotifen o the other thread)



It definitely sounds like you will be better off on mast cell stabilizers. And chromolyn?

@Strawberry I get a itchy scalp due to MCAS issues. Was your psoriasis itch on your scalp that got resolved with Ketotifen eye drops?

 

[Strawberry]

It didn’t cure the psoriasis, but it did help block the itch for a while. I’m now on the pills.

 

[xploit316]

It didn’t cure the psoriasis, but it did help block the itch for a while. I’m now on the pills.

Thanks @Strawberry. Can I ask what benefits you experienced from the ketotifen eye drops? Did it help digestion, cognition, histamine symptoms in any way?

 

[Strawberry]

just my eyes and some itch…. Pills are much more effective IMO.

 

[MCASMike]

Thanks @Strawberry. Can I ask what benefits you experienced from the ketotifen eye drops? Did it help digestion, cognition, histamine symptoms in any way?

Seems to me that only the eye issues were helped.

 

[kewia]

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).

Did you still get IVIG or are you done with?