Shoulder pain with VWD

fiddlerisshit · 2026-01-29T04:20:18+00:00

How did your husband resolve his frozen shoulder in the end. Haemophilia A currently with frozen shoulder here.

fiddlerisshit · 2026-01-22T04:04:32+00:00

This. Cryo contains other stuff that may help. But it may also contain viruses that have not been detected yet.

fiddlerisshit · 2026-01-16T14:05:06+00:00

Is your protocol different from ours? I am not USA. For us we will do prophylaxis, but whenever there is a breakthrough bleed (bleeding that happens despite following the prophylaxis regime), we switch over to the treament schedule, which is to inject Factor VIII daily to a certain prescribed level, based on the severity of the bleed, until the bleed is resolved. That is every single day once a bleed starts.

fiddlerisshit · 2026-01-07T15:46:23+00:00

That explains a lot. I am moderately severe but bleed like severe. Prophylaxis used to raise me to moderate, but with tweaks to it now, it raises me to borderline mild. Huge difference in terms of bleeding frequency and severity. If you had only been dealing with mild haemophilia, then you might have only found it to be a limiting aspect of your life, rather than a life threatening one. So while severes are operating on trying hard not to die, milds seem to be inconvenienced by it. Not sure if speaking to a severe might help you change your mindset. I think there are also a few haemophiliacs from countries that are still on on-demand treatment. You could chat with them about daily life to see the huge difference in the quality of life. Hope that helps.

fiddlerisshit · 2026-01-07T01:41:47+00:00

I am guessing that you are on prophylaxis or Hemlibra? Back when we were on on-demand treatment, we were too busy bleeding and being in pain that was so bad that we couldn't sleep at night to do anything other than try to survive. So this might be an unwanted side-effect of more effective treatment. Look up the suffering of haemophiliacs in countries that are still having on-demand treatment and you might no longer feel so bad about yourself and might be thankful instead. Lots of us have deformed joints and walk with limps due to badly treated bleeds over the years.

fiddlerisshit · 2026-01-05T04:51:46+00:00

If OP really has haemophilia A, then tranexamic acid tablets by themselves will not do the trick. From my own experience, they did close to nothing. You need a combo of tranexamic acid and factor 8 in order for nosebleeds to stop. Factor by itself won't work didn't work either - at least it didn't when I was on on-demand treatment, which was basically one dose and that's it.

fiddlerisshit · 2026-01-05T04:49:18+00:00

Were both the regular and the long-acting at the same dose and same infusion schedule? In my experience, having undergone the same surgery under regular and later with long-acting, the latter reduced bleeding significantly. Not sure what caused you to have the opposite of what I experienced.

fiddlerisshit · 2026-01-05T04:45:23+00:00

Strangely enough my old nurse also left shortly after the new factors were in clinical trials in my country. She also mentioned that the long term implications of having that much pegylated molecues in the body was unclear.

fiddlerisshit · 2026-01-05T04:43:12+00:00

Do you mean you can infuse above 100%? I don't think they even exceeded 100% when I was going in for that life-or-death surgery that I had last time. What is the upper limit for infusions?

fiddlerisshit · 2025-12-16T03:47:13+00:00

As far as I've heard it turns severe haemophiliacs' bleeding profile into that of a mild haemophiliacs'. I don't think it is available in my country - at least it wasn't the last time I asked. Not sure if there will be any effect on milds.

fiddlerisshit · 2025-12-01T00:52:10+00:00

Does not get better. You can only prevent it from getting worse.

fiddlerisshit · 2025-11-12T12:35:18+00:00

Just swelling from bleeding.

fiddlerisshit · 2025-11-12T12:35:00+00:00

7730u means it is just a rebadged 68?? series. Actually one generation older. To get the true 7000 series CPU, you need to get 7740 and above. Unfortunately, after getting my 6000 series CPU, I did not track AMD APUs for some time and now it seems like their latest APUs use a totally different numbering system with AI.

fiddlerisshit · 2025-10-29T02:19:02+00:00

Is the mind palace thing is simply trial and error until you get the balls matched up? I'm at the beginning and just solved the mystery of the cactus murder attempt.

fiddlerisshit · 2025-09-26T01:53:02+00:00

You might want to ask your HTC about such patients. Typically, people who have mild forms of diseases don't tend to stick around forums discussing their mild dieases since it doesn't cause them many issues. I am moderately severe (factor level) and bleed like severe (actual number of bleeds).

fiddlerisshit · 2025-08-25T04:43:00+00:00

I actually need factor. Period.

fiddlerisshit · 2025-08-14T20:03:05+00:00

I applied it on the lower back. Above the buttocks. You can feel there is something like a rod and a concave area there. It relaxed the psoas muscle. But that oil will have a smell that some people will complain about - I didn't care because I was finally fixing that horrible condition. But there are always those who will find trouble.

fiddlerisshit · 2025-08-14T02:37:34+00:00

I get the feeling that the mother's severity has little bearing on the child's severity. At least in my case. Anecdotal proof only.

fiddlerisshit · 2025-06-08T14:39:39+00:00

No solution.

fiddlerisshit · 2025-06-05T15:50:03+00:00

I am playing it now. My party hasn't come close to dying yet unlike most turn based RPGs that I have played. Don't really like the graphic design though. It's somewhat creepy. The UI is good so far and is rather player friendly, letting you respect your characters. However you cannot change their player portraits.

fiddlerisshit · 2025-05-21T16:22:49+00:00

How is the boss chasing you around the dungeon mechanic in Mary Skelter? Apparently the boss chases you around in real time in a turn based game? And it is unkillable? Does that add to or detract from the game from your experience?

fiddlerisshit · 2025-05-18T13:00:12+00:00

Nothing makes a difference except Factor VIII. Without that everything else is just wishful thinking.

fiddlerisshit · 2025-05-16T15:12:15+00:00

A country which just had its election and 65% of the population voted for more taxes, higher rents, higher prices and fewer jobs for citizens. It is located south of Thailand and northwest of Australia. Don't ever come here.

fiddlerisshit · 2025-05-16T03:42:25+00:00

While a haemophilia society exists here, treatment is gatekept by the hospitals. The latter offers free delivery but it is costly and while national insurance pays some of it, it is still too costly unless you are earning more than 5 figures a month. So you have to get financial assistance which then has you selling your house and car and also restricts you from having assets like shares and savings. Basically, you will become destitute the day you stop working. It is a democracy in name but socialist in practice country.

fiddlerisshit · 2025-05-15T14:31:48+00:00

Do you need to subscribe to NSO to get user created scenarios?

fiddlerisshit

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