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Worsening symptoms with MCAS meds??

Discussion in 'Mast Cell Disorders/Mastocytosis' started by bspg, Jul 26, 2017.

  1. bspg

    bspg Plant Queen

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    My new ME/CFS doctor suspects I have MCAS and wants me to start meds for it. I was already taking Claritin in the AM but added Allegra @ night and Zantac 150mg 2x day.

    I've been following this protocol for ~4 days now and I'm sneezing, itchy, have brain fog, chest congestion and post nasal drip. Except for the itching, I wasn't feeling this way before I started these meds. WTH? :eek:

    Has anyone else experienced this when starting MCAS meds?
     
  2. bspg

    bspg Plant Queen

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    Looking back through my tracker, I think it might be the Zantac. I changed from Zyrtec --> Allegra and also had to change my antibiotic this week (ugh, so many changes!!) but these allergy symptoms have remained constant, and so has the Zantac.
     
  3. jimells

    jimells Senior Member

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    My impression is that many mast cell patients have to trial any number of medications to find the ones they are not allergic to. I am highly allergic to Chlorphenamine, an early H1 receptor anti-histamine. It caused immediate severe cramps and diarrhea. The pain was so bad I seriously considered calling the ambulance. Truly awful.

    I have recently figured out that I have mast cell problems. So far, cetirizine (zyrtec) is working well and I tolerate a half-dose of Cimetidine (tagamet, an H2 receptor anti-histamine). A full dose of tagamet caused heartburn after a month. It probably reduced stomach acid too much - like it's supposed to do - but apparently I don't need less stomach acid.

    With so many over-the-counter antihistamines easily available, it seems like a good bet that nearly everybody will be able to find a few that they can tolerate.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    @bspg You might want to try Pepcid instead of Zantac (or ask your doctor about it as another option).
     
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  5. bspg

    bspg Plant Queen

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    Thanks @jimells and @Gingergrrl. I've never had a reaction like this to medication before. Something I noticed is that the zantac and my new antibiotic both have FD&C Blue #2 in them. None of my long-time medications have this. I'm going to stop all the MCAS meds and see if this still continues.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Have you reacted to FD&C food dyes before? Yellow #5 nearly sent me to the ER in early 2015 and started my entire MCAS journey. Even though I am in remission (from MCAS, not from the other stuff), I have continued to avoid all FD&C and Azo dyes to be safe. I am trying to find one of my meds right now in a version without dyes and it is proving impossible b/c my pharmacist switched suppliers. Eventually I am going to test the dyes and see if I am still reactive to them but not willing to do it before my next Rituximab and it would be idiotic (for me) to trigger a massive allergic reaction right now.

    When my doctor wanted me to take Zantac, all the OTC versions had that stupid blue dye (and the generics had other dyes) so I had to get it compounded. But it never helped me whatsoever and was not one of the MCAS meds that I stuck with. I later switched to generic version of Pepcid which has no dyes and it was actually helpful and different than Zantac (at least for me). But it was not a major MCAS med for me like Zyrtec and Ketotefin and in general the H1 blockers and mast cell stabilizers were more helpful for me than the H2 blockers. But we are all so different.
     
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  7. bspg

    bspg Plant Queen

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    Actually, I've never had a reaction like this to a food, dye, or medicine. That's part of why it's so strange.

    And because I've had to switch meds so much this past week (due to side effects) it's nearly impossible to tell what's causing it. At first I thought that maybe the MCAS meds were having some sort of rebound effect but that doesn't seem likely.

    I'm waiting to hear back from my doctor about what to do but for now I'm just stopping all the new meds. It's a bummer because I've been trying to start treating my SIBO but keep having weird reactions so I only get 2 days into antibiotics before having to stop again. I hope I'm not making things worse by creating resistant bacteria in my gut :(
     
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  8. ryan31337

    ryan31337 Senior Member

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    MCAS only suspected by docs in my case, not proven by any testing. But my experience is often one of worsened pruritus, congestion and fatigue, as well as stomach reactions to previously 'safe' food when I introduce new meds or increase dosage. In the case of montelukast it all settled back down again a week or so after each dose increment. Currently going through the same with Nalcrom. Didn't have a problem with anti-histamines (though they make me a little hypotensive and very foggy for a week). Some other 'harmless' pills like multi-vitamins can also have a similar effect, so perhaps a reaction to a common filler.

    Seem to be quite a common thing among the MCAS groups.
     
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  9. Sidereal

    Sidereal Senior Member

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    Zantac substantially worsened my MCAS symptoms. I don't do well with H2 antagonists in general.
     
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  10. bspg

    bspg Plant Queen

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    Okay. Talked to doctor. He's going to start me on Ketotifen and try to get me stabilized before returning to antibiotics and antihistamines again. It's so strange how my body is suddenly reacting to things...It's like it overheard us taking about MCAS and decided it was time to freak out.

    I've had so much going on in the last few days, my poor doctor can't keep up!

    Thank you to everyone for your responses. I'm glad to know I'm not the only one having strange issues.
     
    Last edited: Jul 27, 2017
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  11. bspg

    bspg Plant Queen

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    Also, do MCAS flares increase pain? I'm hurting really badly today.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Please be really careful starting ketotifen. For some of us it is hugely sedating. I had to start with 1/4 mg tab once a day at night. Then work up very slowly. Some people soon get over sedating effects, others, like me, never seem to.
     
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  13. Strawberry

    Strawberry Senior Member

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    MCAS meds definitely made me start reacting more, I think because you up your antihistamine, so the body produces more histamine. Ketotifen makes my MCS reactions worse. I love it for other benefits (itching), so I still take it, but more as a "rescue".

    After a year and a half, I have stabilized some. But I'm still reacting enough that I have started another 5 year stint of allergy shots....
     
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  14. bspg

    bspg Plant Queen

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    Thank you for the advice @justy. I was reading about this effect in another thread this morning and I'm so grateful to you and others who share/have shared their experiences with everything. It's so helpful. PR is such a wonderful resource! :heart:

    @Strawberry this is exactly what I asked my Dr. about this morning and he said this does happen but usually only after chronic use of antihistamines. Since I've just added everything recently he thinks it's more likely that I'm reacting to something new rather than having a rebound effect.

    I'm sorry to hear that you're still reacting and going back on allergy shots.:( I hope they provide you some relief.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    This sounds like a good plan and make sure that the compounding pharmacy does not put any weird fillers in the Ketotefin that you could react to. This was the med that turned things around for me and I am hoping you will have as good a response to it as I did (in 2015). I still take it 1x/day and probably will for the rest of my life.
     
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  16. Strawberry

    Strawberry Senior Member

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    That is very possible, and the fillers and food coloring are my first suspects. I had been on zyrtec for nearly 20 years and doubt that upping to 2 per day did it. It is all trial and error until the body stops reacting to everything.

    BTW, I am back to eating what I want, the shots are so I don't have to get rid of my fluffy kitty and a few other airborne things. And yes, PR IS a gold mine!
     
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  17. Thinktank

    Thinktank Senior Member

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    Is anyone reacting to cromolyn (generic gastrocrom)?
    I'm starting on a very low dose, 100mg before bed and i'd like to build that up to 4 x 100mg or 4 x 200mg daily.
    I'm noticing less inflammation for a few hours, especially at night, just 100mg has a positive effect on my asthma and sinusitis thus sleep. Now after 4 days i feel like having a rebound effect the next day, once the cromolyn wears off the inflammation gets worse. I also feel a bit hyper and the jointpain has increased.
     
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  18. bspg

    bspg Plant Queen

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    I don't have an answer for you, @Thinktank but I've been struggling with cromolyn too. The rate in which I was instructed to increase the dose was way too fast for me and caused me horrible stomach pain.

    TMI part here: I recently started over, doing only 100mg a day, and an hour after drinking it I have intense diarrhea. Like, I have 10 seconds to get to a bathroom or there's going to be a problem. Its horrible.

    I don't like cromolyn but my doctor's convinced that I could gain benefit from it. I'll keep trying for a little while longer but I think it just doesn't agree with some people. It sounds like you're benefiting from it a little though....Have you tried taking another dose once the first one "wears off"?
     
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  19. Thinktank

    Thinktank Senior Member

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    Sorry to hear you're struggling with cromolyn too.

    I just did a quick search on pubmed and found multiple articles mentioning possible worsening of mcas-symptoms with the use of cromolyn. It's a bit of an adjustment period that can take up to 4 months.

    I tried to dose another 100mg in the morning but then it increases my joint and muscle pain even more. I'm not sure if oral cromolyn is the right med. for me. 200mg / day also decreases intestinal inflammation but at the same time it causes diarrhea.

    I think i'll go back on a H1 and H2 combo and maybe add ketotifen. I can't deal with the side effects from cromolyn now.

    Edit: A dose hgher than 100mg also causes painful vasodilation.
     
    Last edited: Oct 25, 2017
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  20. ryan31337

    ryan31337 Senior Member

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    I started by dissolving 50mg 1x per day in hot water, very slowly ramping it up to 200mg x4 per day. It upset me a bit at first but soon adapted.

    After a couple of months at the full dose I came off it to see if the improvements were coincidence. Within days my dyshidrotic eczema was flaring continuously again, I was bloating more after evening meals and the long lasting 'inflamed/acidic feeling' gut ache was back.
     
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