u/Dry-Catch-3921

▲ 2 r/MCAS

Ketotifen - Itchiness?

I made a post about 2 weeks ago on whether to start Cromolyn, ketotifen, or LDN. Thank you to everyone who helped!

I decided to start ketotifen 9 days ago at 0.25mg at night. I was so excited for this drug since I have a lot of mast cell issues (floaters, dermnatographia, orthostatic issues, insomnia, tinnitus, gut isssues).

I have been very constipated at this dose. I usually go to the bathroom once on the AM and now sometimes only go every 2 days.

On day 7, I broke out in an itchy rash all over the back side of my body (butt cheeks, thighs, back of knees) and my chest. I am insanely itchy. I usually don’t itch this bad and my whole body is soooo itchy the past few days. I’ve never itched like this before!

Wondering if I am allergic and if I should stop or try cromolyn. Do symptoms subside? I am reluctant to increase my dose any more given the constipation and itchiness :( feeling defeated!

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u/Dry-Catch-3921 — 5 days ago
▲ 25 r/MCAS

Does sun sensitivity get better after being on mast cell stabilizers?

For 36 years I tanned instantly in the spring. I have an olive complexion and would get crispy dark.

After my MCAS diagnosis a few months ago, I am SO pale and get red immediately within 5 minutes of being in the sun.

After people have gotten on mast cell stabilizers, have you been able to tan again? Or will this white/red skin now be permanent?

What other meds helped you get back to a normal skin tone?

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u/Dry-Catch-3921 — 13 days ago
▲ 4 r/MCAS

Which med to start first?

I have a script for LDN, ketotifen, and oral cromolyn sodium. Which med do I start first?

I have had insomnia my whole life, which has gotten extremely bad after my MCAS started 4 months ago. In the past I have been on mirtazapine and trazadone, and had to come off due to mood disturbances and irritability. I felt very flat and depressed during the day on these meds. For some reason antidepressants just make me feel like shit or have side effects.

I have elevated PDG2 (400+) and luekotrines (115) in my urine. My main symptoms are pots like symptoms, red skin, skin burning. My symptoms started after I took a course of antibiotics then got a virus 6 weeks later that attacked my gut. I am sure I have a gut component since I can no longer tolerate dairy. I have confirmed dysbiosis, leaky gut, low SIGA. I know my hormones are playing a huge role but just had to get off a combo birth control trial due to fillers in the pill affecting my gut. Ironically started to have much better sleep on the combo pill.

I need help. I don’t know which drug to start. I know I have a lot of inflammation in my body. I need help sleeping. I need help with my gut. Heat and sun make me flare.

Out of all 3 drugs, which would you start first or what order of progression? I want the skin burning to stop. It’s debilitating. I went from a full blown athlete outside for 4-6 hours a day with a sales job to unable to leave my house.

I have read LDN can help sleep and mood. I have red Ketotifen helps sleep but can make people depressed. I’ve read oral cromolyn can lead to insomnia. I realize I eventually need a mast cell stabilizer or two.

Thank you for helping ❤️

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u/Dry-Catch-3921 — 14 days ago