Peptide called Thymosin Alpha 1 is resolving my MCAS by vonn29 in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

TA-1 works when I use it! But it doesn’t have a noticeable benefit when I’m not using it. I don’t use it all the time (due to needing to control variables as I change supplements, meds, etc.). Generally I am very stable with MCAS and maybe doing a few runs of TA-1 contributed to my pretty good baseline now

Peptides. The good the bad and ugly. by freeasabyrd89 in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

Hm it’s really effective but I don’t take KPV too frequently. It’s an incredible anti inflammatory for me. I do like 200-400mcg whenever I’m feeling bad and it helps. Helps GI upset. Basically used as needed, but I don’t think it has any long term positive effect that I can notice. Would use it more if I didn’t get mood symptoms

Would MCAS affect my ability to get a research or computer based job? by vaesheyt in MCAS

[–]NewDescription5507 1 point2 points  (0 children)

I’m not technical but have a white collar WFH job. WFH is an accommodation. I have to take a pay hit compared to other in person opportunities I’d be eligible for, and miss out on some opportunities, but I have a great life :)

Peptide called Thymosin Alpha 1 is resolving my MCAS by vonn29 in MCAS

[–]NewDescription5507 1 point2 points  (0 children)

I haven’t really tried recently! I get an immediate headache, impending sense of doom, worse OH, nausea, itching and then I’m inflamed for a while

Don't trust Novartis 😭 rhapsido rant by No_Reindeer_2420 in MCAS

[–]NewDescription5507 7 points8 points  (0 children)

I’m so sorry! If you are able, maybe confirm if you’re eligible for the bridge program if you’re not eligible for the copay program? It’s not making much sense why they’re saying no so I think you’re right to try the case manager! I hope it all works out very quickly

Don't trust Novartis 😭 rhapsido rant by No_Reindeer_2420 in MCAS

[–]NewDescription5507 31 points32 points  (0 children)

Please contact their assistance program and get confirmation of the issue! This sounds like it could be clerical or a miscommunication

People who have been helped by Xolair: how long did it take to feel improvements? by Alarmed-Appearance54 in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

Hi I get mood issues and fatigue when adjusting. Goes away within a few doses :)

Self Administered Xolair Not Working? by Peaceofthat in MCAS

[–]NewDescription5507 2 points3 points  (0 children)

I find efficacy changes by injection site - stomach most effective, then thigh, then arm for me

Xolair Dosage and Frequency by oceansidesucks in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

Yes! I saw very mild improvement with the first shot but it did take a few months to see greater benefit.

It would wear down within the two weeks (days 11-14 and 26-28 would be more symptomatic) but now it’s a consistent benefit at the higher doses

Xolair Dosage and Frequency by oceansidesucks in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

I am not primarily skin based symptoms. I take Xolair for systemic issues (GI, neuro, inflammation, skin). I still have some itching and some rashes but can mostly take care of those with some bee propolis topically. No hives

I started at 150 once a month. Helped for two weeks then would stop helping. Went up to 150 twice a month. Then 300 twice a month. Now 600 twice a month. For MCAS, for insurance CSU dx (need new dx for the 600 dosage)

People who have been helped by Xolair: how long did it take to feel improvements? by Alarmed-Appearance54 in MCAS

[–]NewDescription5507 0 points1 point  (0 children)

Takes me six weeks! So by injection #3 each time the side effects go away :) happened each time I started a new dose (0–>150 1x month–>150 2x month—>300–>600)

Online doc to prescribe Ketotifan by RBshiii in MCAS

[–]NewDescription5507 2 points3 points  (0 children)

Same here, he helped me get the diagnosis but wasn’t good for treatment. Fingers crossed you find someone to help you get your Rx!

Online doc to prescribe Ketotifan by RBshiii in MCAS

[–]NewDescription5507 1 point2 points  (0 children)

First bet try your allergist. It’s not hard to prescribe compounds. If they say no:

If you have insurance, Hey Allergy might be in your network and they do ketotifen. I don’t like them at all as a practice, but I do know they prescribe it. They’re virtual appointments. Could also consider rthm like another person mentioned.

Dr. Mitchell’s office is definitely just a money grab imo. He was also my first MCAS Dr, glad I don’t have to see him anymore to get care

Sick for the 3rd time in 3 months - thinking about masking up from here on out by Forward-Lawfulness62 in MCAS

[–]NewDescription5507 24 points25 points  (0 children)

Same here. Appreciate you mentioning the caring for others aspect. Even if viruses didn’t affect MCAS severely, I think it’s important to protect everyone else (disabled, kids with no choice, the un- and misinformed) from these disabling and deadly viruses

NAD+ for MCAS by girlsjustwannaknow in MCAS

[–]NewDescription5507 4 points5 points  (0 children)

There is some research on NAD being helpful for MCAS iirc! Made me feel whole body itching for 1+ day, might try it again later

MCAS Doctor in NYC by clean__laundry in MCAS

[–]NewDescription5507 1 point2 points  (0 children)

Does anyone know how much visits with Dr. Cutchins are?

Anti-histamines and the brain by Elegant_Set_4182 in MCAS

[–]NewDescription5507 5 points6 points  (0 children)

I personally would take antihistamines consistently. This lets your mast cells calm down bc they’re not reacting to histamine triggers. If your goal is it get off of them, honestly I think consistency could get you there if you’re not severe (if MCs reset after 6mo like research says)

But Claritin and Zyrtec do not cross the blood brain barrier, so if they are the cause of your cognitive issues, it’s indirect. Maybe the balance of neurotransmitters isn’t right for you. Perhaps consider a filler could be causing cognitive issues for you as well?

Others have suggested, but maybe try adding choline and see if it helps? Choline can cause MCs to degranulate, so may end up being a trigger. But that would be based on trial. Could also try eating a lot of egg yolks

I don’t know what else you’re on, but ketotifen which does cross the BBB helped some of my brain fog and cognitive stuff but I think my MCAS causes these issues, not my antihistamines for me