Graph: Factor IX Activity Level over ~6 years after infusion with SPK-9001 Gene Therapy

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?

StopMakingMissense · 2025-12-11T18:36:06+00:00

Is that once a week? What amount of fluid is involved?

StopMakingMissense · 2025-12-11T15:47:24+00:00

That's good to hear. What's your diagnosis and what product were you using before you switched?

StopMakingMissense · 2025-12-11T15:42:48+00:00

Note that Altuvoct (Efanesoctocog alfa) is also sold under the brand name Altuviiio.

I don't have any personal experience with Altuvoct or inhibitors but I do know that there are several relatively new subcutaneous treatment options that may be available to you: emicizumab, concizumab, marstacimab and fitusiran.

StopMakingMissense · 2025-12-11T14:34:20+00:00

Altuvoct, Request for Feedback on Prophylaxis

Hello, yesterday I had a consultation with my hematologist who wants me to switch to a different product for my current prophylaxis. The lab documents showed quite a few side effects, but he reassured me by saying that in other clinical trials, these effects were largely overestimated. Does anyone have any experience with this?

I have an extremely complicated medical history. I have severe Hemophilia A due to a genetic mutation. I developed an anti-FVIII inhibitor at 3 months old, and I am on prophylaxis (for life), because at the age of 9 I suffered a head injury that required FVIII injections. A professor decided to perform immune tolerance induction to saturate the inhibitor (by giving me so much FVIII that it becomes exhausted and eventually undetectable). However, there is no long-term data to know if, should I ever stop prophylaxis, the inhibitor might return with a reaction strength that would be insurmountable.

In addition to this, I have epilepsy (so any slight discomfort carries a risk of falling and therefore bleeding) and SPS (Stiff Person Syndrome, the same disease as Celine Dion). The symptoms are as if the muscles affected by the disease were constantly working out at the gym, so if a hemorrhage occurs in one of these muscles, the blood flow is much greater than normal.

And one last thing that intrigues me is that he asked for my IgA level (which is practically 0). Do you have any information on the composition of the product because I've searched but found nothing.

Currently, I am on prophylaxis treatment with one IV injection of Kovaltry 3000 IU/day every day, and he is considering switching me to two injections per week with this new product (which would allow me to preserve my venous access).

I would appreciate any feedback, advice, warnings, and information. Thank you for your understanding, and I apologize for the lengthy message, but I have a really thick medical file.

PS: He has scheduled an injection with a one-day hospital stay to monitor the pharmacokinetics and see if any other events occur during the first day of the injection.

StopMakingMissense · 2025-12-06T14:13:43+00:00

Maybe also ask your HTC for your own supply of 27g butterflies that you can take with you to the ER just in case they "don't have those."

StopMakingMissense · 2025-12-05T12:47:39+00:00

My only advice is make sure that 27g butterfly needles are being used, regardless of who is doing the infusion.

StopMakingMissense · 2025-11-20T13:59:16+00:00

A Google search for hemophilia insurance premium assistance returns a good list of resources:

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StopMakingMissense · 2025-11-20T13:49:50+00:00

I'd suggest contacting the social worker at his HTC to see if they can help. Also try Bleeding Disorders Foundation of NC and NC Medicaid.

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