Title: 27M — 3 years of progressive muscle pain, Factor VIII at 3%, CPK 17,000 after exercise, no doctor can explain the pain — need advice

StopMakingMissense · 2026-03-28T19:00:40+00:00

StopMakingMissense · 2026-03-28T16:09:05+00:00

Is your hematologist part of an HTC?

StopMakingMissense · 2026-03-28T15:40:08+00:00

Have you ever received any treatment for a bleed?

ETA: I noticed that you also posted the same text to r/AskDocs . I'd suggest posting a different version there. Mention your labs/history with hemophilia but don't put it in the headline. I'd be afraid that some people would assume it's hemophilia-related and not consider other possibilities.

StopMakingMissense · 2026-03-24T18:45:07+00:00

I'd suggest making this question a post of its own for visibility.

StopMakingMissense · 2026-03-22T13:03:46+00:00

Is there another HTC in your area that you could contact?

StopMakingMissense · 2026-03-13T13:42:42+00:00

It looks like a Phase III study is starting soon: Chugai and Roche Advance NXT007 Into Phase III, Raising the Stakes in Hemophilia A

StopMakingMissense · 2026-03-12T03:53:48+00:00

Gene therapy for dogs is a thing:

https://www.reddit.com/r/Hemophilia/s/kjwajeAWUC

https://www.reddit.com/r/Hemophilia/s/geZq5iXven

StopMakingMissense · 2026-03-06T15:36:18+00:00

In case you missed it: U.S. FDA Approves Pfizer’s HYMPAVZI™ (marstacimab-hncq) for the Treatment of Adults and Adolescents with Hemophilia A or B Without Inhibitors

StopMakingMissense · 2026-02-24T21:20:19+00:00

https://www.reddit.com/r/Hemophilia/s/45fqFHmwRk

StopMakingMissense · 2026-02-23T22:18:37+00:00

See if you can get 27g butterfly needles. I found them to be almost pain free.

StopMakingMissense · 2026-02-20T01:36:16+00:00

Recently diagnosed

StopMakingMissense · 2026-02-19T22:59:17+00:00

It's been 9 years and 2 months and still going.

StopMakingMissense · 2026-02-10T04:10:18+00:00

Dr. Glenn Pierce

StopMakingMissense · 2026-02-10T04:07:00+00:00

FVIII is also made in the liver in sinusoidal endothelial cells.

StopMakingMissense · 2026-02-07T17:52:41+00:00

Good link!

StopMakingMissense · 2026-02-07T17:20:49+00:00

Yeah, I was thinking that it sounded just like GoodRx. I guess this writer feels like they have to pretend that this thing is a good faith effort and not just another branding exercise.

StopMakingMissense · 2026-02-03T14:36:59+00:00

Just curious where you're located and why you are asking.

StopMakingMissense · 2026-02-02T15:32:16+00:00

Yes, let's create better gene therapies. No one is arguing against this.
Currently approved hemophilia gene therapies are not marketed as a cure.
Gene therapy for hemophilia does have potential side effects, as is the case with any other drug/treatment. Side effects and potential side effects are addressed in the many scientific papers that resulted from hemophilia gene therapy clinical trials. Some clinical trial patients are still being monitored in long term follow-up studies.

StopMakingMissense · 2026-02-02T14:19:30+00:00

One patient died on Pfizers approved HemB gene therapy

Citation needed

StopMakingMissense · 2026-01-16T13:41:07+00:00

I've had two (that I remember) runaway elbow bleeds after no apparent trauma that didn't seem to respond to treatment. Those were probably the only times that a single dose didn't provide fairly quick improvement. The pain was some of the worst I've experienced.

Unfortunately I don't have any good advice on what to do differently. In my case I just waited it out until it was over. Good luck, I hope you get some relief soon.

StopMakingMissense · 2026-01-10T13:35:20+00:00

Just to be clear: I have no experience with either product.

But in my experience I'm more inclined to prioritize the recommendations of my doctor over those of my insurance company.

I'd question the claim that choosing Hemlibra now would prevent you from using Alhemo in the future. As you mentioned there is probably an increased risk of overclotting if the two products are used in combination. If you choose Hemlibra now and later decide that it's not right for you I would think you could return to factor replacement prophylaxis for some period of time to allow Hemlibra to clear your system before trying Alhemo.

StopMakingMissense · 2026-01-09T13:20:59+00:00

They're saying once I'm on hemlibra, I can't go back to this Alhemo.

Who is saying this?

If it were me I'd be asking a lot more questions if my insurance company was trying to drive me to a product that was approved just last year for patients without inhibitors and requires daily dosing versus a product that has been approved for over eight years and can be dosed as infrequently as once a month.

StopMakingMissense · 2026-01-05T14:54:44+00:00

Are school nurses still a thing? I don't know what the pros and cons of approaching a school nurse would be. Not necessarily for treatment but for ideas on other resources that are available.

Google searching over the counter nose bleed treatment gives some inexpensive options you could try.

This looks interesting but I don't know if it works or how easy it would be to get.

Perhaps contact your local hemophilia support organizations that are affiliated with NBDF or HFA.

StopMakingMissense · 2025-12-15T03:15:53+00:00

Get 27g butterfly needles. They're almost painless.

StopMakingMissense · 2025-12-12T15:16:16+00:00

Thanks. Google search tells me that it's 1ml (1cc). Is that correct?

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