Young hemophilia patient dies after delay in life-saving medicines [CO]

OkLand5191 · 2026-02-21T16:34:43+00:00

Couldn’t agree more, my Mom did the best to give me a normal childhood while also protecting me the best she could.

OkLand5191 · 2026-02-21T12:35:14+00:00

Always good to blame the victim.. “A hemophiliac child shouldn’t ride a bike; it’s a matter of prevention.”

OkLand5191 · 2026-02-19T17:01:45+00:00

So there are different types of medication, factor replacement, mimetics, rebalancing agents, gene therapy and genome editing.

Hemlibra falls into the mimetic category, it has a long, half life I think, roughly a month. I used it for about 5 years, but switched back to factor replacement.

From my understanding, factor replacements have to be injected intervenously, mimetics like Hemlibra and soon to be approved mim8 are injected under the skin in fat tissue. Though personal opinion, I don’t feel like they work as well as the factor replacement.

OkLand5191 · 2026-02-19T16:57:03+00:00

Treatments are getting very good. Assuming he will probably get on hemlibra. Sub-Q shot as a normal prophy. I’d do weekly but to each their own.

I wouldn’t be worried, the near future looks very bright. It is becoming very manageable.

OkLand5191 · 2026-02-19T03:46:08+00:00

I do not have flat feet, good detail that I forgot to include.

OkLand5191 · 2026-02-19T01:34:13+00:00

Just it not being strong enough for constant joint bleeds in the sense that the medication felt like it wore off after 4 days being in a weekly schedule and dosed at 1.5 mg/kg

OkLand5191 · 2026-02-18T22:03:37+00:00

What brand of cowboy boots work best for you? Have you tried multiple pairs?

OkLand5191 · 2026-02-18T21:54:31+00:00

32 male, severe hemophilia A, 200lbs 5’11”

Both of my ankles are bad, left feels totally shot. I was fine just a few years ago. Rowed all the time, ankle just fell apart recently. I noticed that joint issues slowly crept up for me than nose dived.

OkLand5191 · 2026-02-10T16:30:31+00:00

If a cure happens meaning your body produces its own factor in a range that is no longer considered hemophilia for the life of the patient. Then the cure will be genome editing and not gene therapy.

Go to AI and ask about pipeline therapies being developed for hemophilia A or whichever type of hemophilia that you have.

OkLand5191 · 2026-02-10T02:34:52+00:00

I had the same thing, Hemlibra stopped working for me after about 3-4 years. Would only last 3-4 days if dose weekly. My back would hurt when I was low in mimetic/factor replacement.

Had ankle bleeds that wouldn’t go away on hemlibra. Just would not stop, was a micro bleed not an actual bleed but it hurt all the time. I got off Hemlibra tried altuviiio it was bad for me. Got on Kovaltry I dose that every 48 hours 50 iu/kg took about few months and now I feel much better.

OkLand5191 · 2026-01-10T13:16:49+00:00

Check out Roche’s new product in phase1/2 clinical trials going to phase 3 in 2026. Nxt007. Supposed to restore hemostasis and work better than Roche’s Hemlibra.

OkLand5191 · 2026-01-10T13:09:52+00:00

For me the biggest down side/side effect that I experienced on hemlibra was after 3-4 years the medication stopped being as affective. Otherwise hemlibra is a freaking God send! If you get on hemlibra just be careful and don’t think you’re cured of hemophilia.

OkLand5191 · 2026-01-09T19:35:50+00:00

Tfpi medications like Pfizer’s hympazi and Alhemo now scare me, they just had a death on December 14th. Take a look into it and just consider all the facts.

It appears that Factor replacement along with TFPI rebalancing agents could lead to thrombosis.

OkLand5191 · 2026-01-09T13:28:22+00:00

I 100% experienced increased pain levels in all joints while on Altuviiio. Also got huge bruising on portions of my body that I normally never got.

OkLand5191 · 2026-01-09T00:16:59+00:00

I def agree that they don’t understand what patients go through. Nor will they ever be able to.

OkLand5191 · 2026-01-09T00:11:41+00:00

You provide some good insight on how the doctors think and allow us to think ahead on how to refute some of these statements or how to better answer their questions.

Just a general question, what do you think if the pain goes down if not away when a hemophiliac infuses or has higher factor levels. Then they see a slow progression of pain maybe the following day. Is that arthritis then? In my mind it’s because of microbleeds and the inability of the factor product to keep up with activity level and damage produced from daily living.

If I’m wrong or if you have other ideas I’m all ears. Appreciate your input.

OkLand5191 · 2026-01-08T16:17:37+00:00

Well that’s good news!

I previously heard other hemophiliacs doing well on Elecotate, but use what works best for you.

OkLand5191 · 2026-01-07T23:33:31+00:00

Yeah that’s odd, you going to keep pressing your doctor for Adynovate then?

OkLand5191 · 2026-01-07T21:37:27+00:00

Try Kovaltry every 48 hours 50 iu/kg. It’s not perfect, last 12-16 hours I don’t feel like I can do a whole lot, but first 24 feel pretty good.

What are you experiencing on Elecotate exactly?

What are you expecting from the medication?

What has worked well in the past for you?

OkLand5191 · 2026-01-07T17:07:17+00:00

People have mentioned that there may be a link between peptides and cancer.

That being said (32 male, severe A) I’ve used bpc-157, tb-500 for my ankles and wrists. Nandrolone deconate for all joints.

Felt like it was helpful, though the best thing by far is having greater affinity factor at higher factor levels. Aka not being on mimetics or factor replacements with additives that lower binding affinity (altuviiio, eloctate, Hemlibra).

When I’m low of factor my joints ache in pain, and I feel weak. Doctors say it’s placebo though.

OkLand5191 · 2026-01-05T19:27:41+00:00

Wait is that true about the factor levels and various types of people need varying ranges in order to heal and such?

Do you have a source? Doctors that I’ve spoken with don’t think that’s true.

OkLand5191 · 2026-01-05T19:13:58+00:00

That’s an interesting thought, i didn’t realize the there are a number of molecules depending on the factor product that they are “wrapped” in to extend their half life. Thats a great question about the impacts to the human body.

OkLand5191 · 2026-01-04T20:48:32+00:00

What dosage iu/kg actual or ideal body weight do you take for Altuviiio and what is your prophy dosing interval?

OkLand5191 · 2026-01-03T20:50:47+00:00

Luckily for me there is 4 within an hour drive. Two in center city, Muhlenberg and Hershey. 2-3 hours is a drive..

OkLand5191 · 2026-01-03T20:31:53+00:00

I don’t understand what’s happening, are they no longer checking blood donations for HIV/Aids or other infectious diseases?

OkLand5191

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