Hemophilia

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Does any one have factor five Leiden and if so does your body respond to pain medication?

Does any one have factor five Leiden and if so does your body respond to pain medication?

A MyHemophiliaTeam Member said:

I have Factor V Lieben and on Percocet for pain. I also have nerve burns done every few months to my left leg where I’ve had 3 clot. I feel every single… read more

posted 9 months ago

Physical Therapy

Physical Therapy

I do pilates 2-3 days a week. I also walk 3 days a week. I find this has helped keep the pain in my joints, and all around well-being more positive. My question is: Is this too much?

A MyHemophiliaTeam Member said:

If you enjoy it, you are not in pain and your levels are good I don't see why it would be too much. I think the stretching walking and strength training… read more

posted almost 2 years ago

Need help finding others with the same very rare coag profile

Need help finding others with the same very rare coag profile

Recently encountered a 6 year old kid that has the following coagulation profile...Severe F8 deficiency, very mild F9 deficiency and a low titer F8 inhibitor...does anyone else have the same profile???

A MyHemophiliaTeam Member said:

My son is 6mo old with f8 severe. I am 30 with f8 moderate, low vw but so far he has no inhibitor but i have no inhibitor perse but no tolerance to read more

posted over 1 year ago

Does anyone else have side effects from Amicar?

Does anyone else have side effects from Amicar?

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

A MyHemophiliaTeam Member said:

I've had similar side effects (nausea, dizziness) with Amicar, which I've used after invasive dental procedures (extractions, other oral surgery). It… read more

posted 11 months ago

I have Von Willebrand

I have Von Willebrand

Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement

A MyHemophiliaTeam Member said:

Yes terrible for many years. I'm sorry you are hurting.

posted 7 months ago

Elbow pain - older Haemophiliacs

Elbow pain - older Haemophiliacs

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

A MyHemophiliaTeam Member said:

Yes. I am 62 with severe Hemophilia A and am currently experiencing chronic pain in both elbows, both ankles and both knees. Had total joint replacement… read more

posted about 1 year ago

Has anyone have prolonged menstrual cycles associated with excessive bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

A MyHemophiliaTeam Member said:

I have ITP with bad periods, extremely heavy bleeding started the depo shot for 8 years must have went through menopause while on it. No periods now. I’… read more

posted 3 months ago

NOWIQ and octapharma

NOWIQ and octapharma

got a packet from the non-profit chapter about this company and their product. was just wanting to see the reviews from people that i have connected to or a support group that i am in.

its derived from human based cells, from what i am gathering. just not sure on it as last i remember when they had tried something along that line the AIDS and Hep C outbreak occurred.

Do any of you with VWD experience petechiae and fatigue?

Do any of you with VWD experience petechiae and fatigue?

For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?

A MyHemophiliaTeam Member said:

I also have VWD and get the same spots on my chest , face and even fingers .

posted 4 months ago
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