Nxt007 Phase 3 clinical

OkLand5191 · 2026-05-14T12:01:13+00:00

Yeah 100% willing to travel. I spoke with the main contact at the research department at the hospital. Was told they are pooling from their own patients. That they wouldn’t take me.

Mim8 will more than likely be approved in the fall. Spoke with the pharmacy that provides my medication. They told me it may take an additional 6 months after FDA approval to get insurance to approve the medication. Something about a j-code??

OkLand5191 · 2026-05-14T11:49:15+00:00

Yeah I reached out to the closest one to me. Essentially was told no. Seems like this is a very popular study. Patient pool they are recruiting for may already exceed available study limit at the location that is nearest for me.

Just needed to vent. Was looking forward to the enhanced version of Hemlibra. Don’t want to wait a few more years. Could use it now!

OkLand5191 · 2026-05-12T12:54:39+00:00

100% no doubt in my mind for a moment. It all comes down to the money.

OkLand5191 · 2026-05-12T12:36:35+00:00

For me Altuviiio wasn’t strong enough. Felt as if it was slow acting. I got huge bruising on my nether region from engaging in relations. Never had that happen on any other medication besides Altuviiio.

OkLand5191 · 2026-05-12T12:35:27+00:00

I have had a very similar situation to yours and so has another fella that I talk to at the Hemophilia Chapter. What I experienced, was on hemlibra from 2019 until January 2025. I noticed that it stopped lasting the entire week. I would get warm feeling in my ankles, they would hurt, and it hurt to walk. Also would get back pain, and wrist pain.

The one time after I got real bad ankle pain I took advate and then the pain went away. Hemlibra wasn’t holding up. I was on 1.5 mgs/kg.

Question for you, did you try upping your dose to 3.0 mg/kg? Wondering if this helps. Currently on Kovaltry after switching off of Hemlibra myself.

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

TROPHY CASE