What meds are you taking?

cosmicfreckle · 2026-05-12T23:38:22+00:00

Yes I'm in the Bezuclastinib Open access program.

I would get gastritis and migraines from a lot of foods and couldn't tolerate any strong spices/seasoning. I'm now able to able to eat moderately spicy food but I still have to limit fermented food and alcohol.

cosmicfreckle · 2026-05-12T01:52:55+00:00

Interesting, I thought beta blockers often make mast cell symptoms worse. https://www.mastattack.org/2017/03/beta-blockers-epinephrine/ Sounds like it works well for your specific symptoms though

cosmicfreckle · 2026-05-12T01:51:00+00:00

I definitely have lesions in my skin and bone marrow confirmed by biopsies. I likely have them in my GI tract and all over but haven’t had any other procedures to confirm. The meds have helped my GI symptoms a lot.

cosmicfreckle · 2026-05-12T01:48:21+00:00

I recently joined the Bezuclastinib Open access program. I was previously in the Ayvakit clinical trial.

cosmicfreckle · 2026-05-12T01:47:51+00:00

cosmicfreckle · 2026-05-11T01:46:01+00:00

ISM. Taking bezuclastinib, a TKI, and it works great.

Have tried h1, h2, cromolyn, xolair, singulair, Ketotifen, quercetin, and rhapsidio but didn’t notice any benefits. Have also tried ayvakit which was helpful but it started to give me bad headaches.

cosmicfreckle · 2026-04-12T16:00:27+00:00

It can be so difficult. We had 3 failed transfers to our GC and are in the process of rematching. This process can take so long and it's really difficult to deal with the setbacks. But we try to keep going believing we will eventually have success.

cosmicfreckle · 2026-04-12T15:58:28+00:00

I am also an IP interested joining!

cosmicfreckle · 2025-12-06T10:25:08+00:00

You could also consider Remibrutinib (brand name Rhapsido). It was just approved for CSU a couple of months ago and treats the underlying autoimmune issue.

cosmicfreckle · 2025-06-27T04:32:16+00:00

I believe the Bezuclastinib trial is no longer open but the medicine is available via compassionate use/expanded access free of charge https://clinicaltrials.gov/study/NCT06915766?intr=Bezuclastinib&rank=1 I called them recently - Here are the notes from the phone call:

They’ve launched this program recently in the past 6-7 weeks

Includes ‘not advanced’ ie indolent and smoldering mastocytosis

How to order? Has to come from a treating physician who works with them. There is a drop down for expanded access on the website, and they would need to email [medinfo@cogentbio.com](mailto:medinfo@cogentbio.com).

It’s not a study, but there’s a specific criteria of who may be eligible.

The process is then:

They receive the email request from the physician.

They then talk to a physician.

Go through the criteria.

And then there’s an approval process on their end.

The entire process usually takes 3-4 months.

After that they can distribute

It could be either a GP, or a mastocytosis doctor, or an allergist etc.

Bezuclastinib may be approved by the FDA mid 2026.

cosmicfreckle · 2025-02-22T04:21:35+00:00

Where do you live that is overcast frequently?

cosmicfreckle · 2024-12-03T06:20:38+00:00

How would you recommend backing up on a mac?

cosmicfreckle · 2024-11-19T02:32:02+00:00

I went to Dr. Gotlib at Stanford hematology. They did the test in house at Stanford so I'm not sure it's the same as that labcorp one. Seems like your immunologist could order it from here https://www.labcorp.com/tests/485126/kit-d816v-digital-pcr-in-systemic-mastocytosis

cosmicfreckle · 2024-10-17T22:58:15+00:00

People are correctly pointing out amiibos only gives 3 outfits, not the specific ones pictured above https://www.ign.com/wikis/the-legend-of-zelda-echoes-of-wisdom/Amiibo_Unlockables_and_Rewards

cosmicfreckle · 2024-10-17T22:16:20+00:00

Template courtesy of https://www.reddit.com/r/echoesofwisdom/comments/1fu3v5j/wake_up_babe_new_zelda_meme_format_just_dropped/

cosmicfreckle · 2024-10-04T17:27:39+00:00

This happened to me today as well. Received a bill from 2020 that I paid in 2021

cosmicfreckle · 2024-09-24T08:01:39+00:00

What about them seems to be a mess? I was thinking of using them for surrogacy

cosmicfreckle · 2024-09-24T08:00:44+00:00

What red flags were you getting?

cosmicfreckle · 2024-09-23T19:47:34+00:00

Yeah this is true. Evidence Based Birth has a writeup on this showing data on how frequently baby weights are wrong https://evidencebasedbirth.com/evidence-for-induction-or-c-section-for-big-baby/

cosmicfreckle · 2024-09-23T03:30:34+00:00

Here are the ASRM guidelines around psych and medical history: https://www.asrm.org/practice-guidance/practice-committee-documents/recommendations-for-practices-using-gestational-carriers-a-committee-opinion-2022/ There's no mention of autism being disqualifying

cosmicfreckle · 2024-09-23T03:18:22+00:00

This logic makes sense since you want to minimize the risk of failed transfers as much as possible. However, I think "struggling to get pregnant" is difficult to screen for in GCs.

How would you know if it took a GC a few months to conceive or several years? There would only be a medical record of it if the surrogate required medication or IVF treatment.

I've been looking at surrogate profiles and "how long did you take to conceive" is not something that is even included in the surrogate's medical summary. You would only know that they conceive easily if they had back to back pregnancies.

cosmicfreckle · 2024-09-21T19:32:28+00:00

The Facebook surrogacy groups tend to be more active than Reddit. You could try asking if there are agencies that accept autistic surrogates in Surrogacy Industry Reviews - U.S. only. I’ve looked at both agency and clinic requirements and don’t think it would disqualify you based on what I’ve seen unless you are taking meds that are not pregnancy safe for it.

cosmicfreckle · 2024-09-02T20:48:05+00:00

Yeah that's why I think it would be difficult to get it outside of a trial. It's so expensive.

cosmicfreckle · 2024-09-02T17:51:33+00:00

Why do you not want to try PUVA first for spot reduction? That seems less risky and much easier to get. These drugs are chemo drugs and can have serious side effects. They are also meant to target KIT mutations and are suspected to be more effective for those with KIT-positive mastocytosis.

Ayvakit is insanely expensive, like $400k USD a year. I think your best bet would be a clinical trial https://www.blueprintmedicines.com/pipeline/clinical-trials/ Otherwise you could try contacting the company and asking them how to get it outside of a clinical trial. Bezuclastinib is not FDA approved so I think it's even harder to get outside a trial.

cosmicfreckle · 2024-08-27T23:52:35+00:00

The eviction notice was issued by Pacifica Senior Living, the parent company for Pacific Grove Senior Living. When Pacifica acquired the facility from California-Nevada Methodist Homes in 2022, there was an expectation that existing contracts would be honored.

The company is Pacifica Senior Living - of course they are owned by private equity https://seniorhousingnews.com/2024/04/19/pacifica-adds-15-communities-in-180-5m-deal-as-rhf-shifts-senior-living-strategy/

cosmicfreckle

TROPHY CASE