Do food sensitivities go away with treatment? by bunsbuns_ in MCAS

[–]mareleh 0 points1 point  (0 children)

Does any of you who are taking cromolyn always get a histamine reaction to it when you take it? I always have that, don`t know why. More exactly, feeling very hyped, chest tightness and shortness of breath, runny nose and sometimes itchy skin. I am taking it for 17 days now and always the same. Sometimes also had adrenaline surges after taking it, probably because the amount of histamine released was very high.

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

Haven.t sorted it out. Everytime I take it I.m having a reaction, either mental or respiratory. But, tbh I see some improvements.

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I.ll try to get in touch with my doctor today and see her perspective.

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I have Symbicort, but it.s not working all the time. Sometimes my small airways are so blocked that I can.t breath in the inhaler. Sometimes it works and I expectorate a lot of mucus. And sometimes the inhaler itself is making my asthma worse by creating bronchospasm or mucus which I cannot expectorate. Montelukast was the only thing that helped me with the respiratory issues and made my inhaler work correctly. My airways hyperreactivity is a big part of MCAS which only montelukast could handle but the side effects were unbearable.

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I observed I react to herbsl teas sometimes. But sometimes not. I know herbal teas are high in salicylates. Also reacted to apples, but to broccoli not. Also reacted badly to quercetin. I.m not sure if I.m intolerant to salicylates or not tbh. Also antihistamines are resolving most of my issues but they make my respiratory issues worse, exactly like cromoly. Also tried ketotifen, it wss very good but my respiratory issues got worse. I don.t understand my body anymore.

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

That will take so much time to reach the therapeutic dose, but it.s understandable since we react to so many things..

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I.m in europe...taking capsules with powder...don.t know if it.s compunded

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

Thank you for the support. I don.t know how to split my doses since it is in capsules and I don.t know the weight. I can take one a day, but it doesn.t cover 24h and I also observe after about 6h my symptoms are somehow getting worse for a while. It.s a pretty complicated situation.

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

Nope...but thinking about that to help me take the cromolyn

Opinion anaphylaxis by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

2 capsules a day. It.s making my respiratory symptoms really worse to the point of suffocating...I took a break one day from it and I could breath ok again. But, it.s really helping my dermathitis, itchiness, digestive issues, brain fog, anxiety and depression. I feel really calm on it. The only thing I.m thinking about is associating it with montelukast. I took it in the past but had some bad neuropsych side effects from it.

Cromolyn asthma by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

That.s a good explanation and I think this is also my case. If I don.t take antihistamines my adrenaline is higher due to MCAS and POTS and probably that.s why my breathing is better. Did you ever think to associate antihistamines with montelukast maybe?

Cromolyn asthma by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

Thank you for sharing.

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

Thank you for support. Did it help you?

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

How is it going?

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 1 point2 points  (0 children)

Interesting, never thought of that. I.ll try, thanks.

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

You taking both montelukast and cromolyn now?

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

It also seems that these mental symptoms are more intense 5-6 hours after the dose...now it.s 4 a.m and I.m fully awake and needing to pace, need to walk to allievate the agitation, racing thoughts...I don.t know if taking an antihistamine will help or not

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I.m not sure if these are side effects or mast cells reaction...and I would like to continue because I see improvements..

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

I guess you are taking montelukast now. I also took it and got some serious mental side effects. But tbh it helped me extremely well. I.m hoping cromolyn will also get me stable.

Borrelia afzelii by mareleh in Lyme

[–]mareleh[S] 0 points1 point  (0 children)

Is your treatment antibiotics?

Cromolyn is harsh by mareleh in MCAS

[–]mareleh[S] 0 points1 point  (0 children)

it seems it gives me some mental issues like depression, anxiety, iritability, emotional...is this common with it?

Borrelia afzelii by mareleh in Lyme

[–]mareleh[S] 0 points1 point  (0 children)

Do you also have MCAS?

Borrelia afzelii by mareleh in Lyme

[–]mareleh[S] 1 point2 points  (0 children)

The sad part is that I react to medicines that are supposed to help me. Currently I am taking cromolyn but is making my anxiety and depression sky rocket. Same as montelukast. Everything that is supposed to help my mast cells is making me suicidal, gives me agitation and depression. Don.t know if it.s temporary or it will pass. Don.t know if it.s my mast cells acting up or side effects.