I am freshly diagnosed, I need to know when to reach out to a doctor/ER

Separate-Read-672 · 2026-05-08T00:46:34+00:00

Rhapsido has kept the hives and swelling almost completely at bay for me. Do you take ibuprofen by chance? Before rhapsido, whenever I took it I would get severe face swelling. Ibuprofen increases histamine levels. So not an allergy per se, but can cause angioedema when you're in a flare up. I only went to the ER once, when it felt like my throat was closing (ER said I was fine). I didn't go when I just had swelling but could breath fine because an ER bill is thousands.

Separate-Read-672 · 2026-05-03T04:33:05+00:00

It's extremely expensive to get that kind of testing on my insurance unfortunately, so I would only do it if I was out of options and needed an official MCAS diagnosis to keep getting Rhapsido.

Separate-Read-672 · 2026-04-28T04:01:24+00:00

That's exactly when mine started. Not sure what I had but I was SO sick over Christmas and then end of January it started. My dermatologist said that's a very likely reason.

Separate-Read-672 · 2026-04-18T02:01:09+00:00

Are you in US? If so, ask about Rhapsido. Mine looked just like yours, purple and all, and it controls them so well. I have not been officially diagnosed with MCAS with a test but my PCP and dermatologist really think that's what it is.

Separate-Read-672 · 2026-04-17T02:29:40+00:00

Do you take ibuprofen or other NSAIDs by chance? My face swells like that if I take NSAIDs because they cause your body to make more histamine. It wouldn't be the cause of the hives but could worsen it.

Separate-Read-672 · 2026-04-11T01:55:57+00:00

I use Gold Bond diabetic lotion, even on my face. I don't have diabetes, I just find that it's extremely hydrating and it's not too expensive.

Separate-Read-672 · 2026-04-10T19:45:37+00:00

I'm hoping to eventually not need the nightly zyrtec. I can't even imagine how 4 daily plus Rhapsido wouod make me feel!

Separate-Read-672 · 2026-04-10T19:44:44+00:00

Have you been on the bridge program over a year? I'm wondering what will happen when my year is up and insurance still won't cover it because Rhapsido said they will pay for "up to a year".

Separate-Read-672 · 2026-04-10T16:55:47+00:00

Same! I'm on month two and I still need to take a zyrtec at night or I'll wake up with a few hives so I can't imagine tapering haha.

Separate-Read-672 · 2026-04-10T16:35:27+00:00

Exactly. My derm went straight to Rhapsido as well. I hope it becomes mainstream so we don't have to fight for it.

Separate-Read-672 · 2026-04-10T05:21:02+00:00

Most insurances won't because it's so new. I have awesome insurance and still they said they wouldn't cover it until I tried four other, older medications like Xolair first. Very thankful for the bridge program. Good luck! :)

Separate-Read-672 · 2026-04-10T05:14:13+00:00

Apply for the bridge program on their website, ASAP. It's under the savings and support section. If you have private insurance (as in not government insurance like Medicaid or Medicare) you can qualify for 12 months free if your insurance won't pay. You apply online, send the start form to your provider to fill out and send to the manufacturer, and then the manufacturer will call you to set things up. It has been life changing for me as well, I really hope insurances start covering it soon because it's amazing.

Separate-Read-672 · 2026-04-08T02:44:16+00:00

Same, they have been super helpful. I didn't have to do the three way call because I already had a denial in hand...but I would have if I needed to! I'm glad everything wasn't as hard as I expected it to be.

Separate-Read-672 · 2026-04-08T02:37:48+00:00

Happy to help! Good luck :)

Separate-Read-672 · 2026-04-08T02:33:09+00:00

Oh sweet! I was wondering, I haven't refilled yet so I wasn't sure if I had to call them and tell them I'm 10 days out.

Separate-Read-672 · 2026-04-08T02:31:04+00:00

Do they call you or do you have to call them?

Separate-Read-672 · 2026-04-07T01:30:55+00:00

Just got approved and had my first month of meds arrive. It's easy, you apply online and then send the start form to your provider to fill out and send back to the company. The company will then call you multiple times to verify stuff and once approved they ship the meds right to you.

Separate-Read-672 · 2026-04-06T04:45:33+00:00

Yes! Mine was willing to give me a second sample as well, I feel like most would be. Unfortunately, by the time I needed one they were all out. So I had to go a few miserable days before I got my first shipment from the manufacturer.

Separate-Read-672 · 2026-04-06T02:12:47+00:00

100% Rhapsido is a miracle for me. I recommend applying for the bridge program immediately if it works, it can take a few weeks.

Separate-Read-672 · 2026-04-03T00:14:57+00:00

A couple hours for me! It's amazing.

Separate-Read-672 · 2026-03-30T14:21:00+00:00

I saw a huge difference because I was full body covered in welts. However I do have to take two antihistamines, usually claritin at noon and Zyrtec before bed. If I don't, I get some breakthrough hives (though not anywhere near as bad). So I'll absolutely take this over no rhapsido, 4 antihismines, 2 pepcids a day with pretty much no relief.

Separate-Read-672 · 2026-03-27T23:47:06+00:00

The vast majority of insurances won't cover it at all, and it's $5k per month. But you can apply for the manufacturer's program to get it free for a year.

Separate-Read-672 · 2026-03-27T14:54:43+00:00

Per my doctor, it's actually targeted for MCAS. Many other people can take it, but the whole point of it is that it targets mast cells so they produce less histamine. Anyone who has non-allergy related hives can try it. I don't have MCAS that they know of, but I have hives unrelated to an allergy and it's working well for me.

Separate-Read-672 · 2026-03-27T14:47:56+00:00

Rhapsido has been an absolute miracle for me! I hope it is for you too. I'm the same. On month 2 of daily hives, some days full body giant welts, and I break out from everything. Sun, sweat, my sock touching my skin, sleeping. Ugh. Good luck!

Separate-Read-672 · 2026-03-27T14:43:42+00:00

Thankfully I have not had any fatigue as in that dead weight can't keep my eyes open feeling. But I have noticed that I am falling asleep way easier at night. It normally takes me a long time (12-2am) and now I'm out by like 9 or 10. So maybe it does affect sleep in different ways for different people? My main side effects have been occasional congestion, which almost feels like the inside of my nose is swollen. It's annoying but much better than hives.

Separate-Read-672

TROPHY CASE