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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 over 1 year 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 over 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 about 2 years 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:

I use a lot of pepperment oild and jajoba oild mixed for joint pain that helps

posted 4 months 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 over 1 year 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 almost 2 years 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.

I Am Wondering About Fatigue With Mild VWs.

I Am Wondering About Fatigue With Mild VWs.

My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the… read more

A MyHemophiliaTeam Member said:

I get extremely fatigued even tho I’m mild...also looking for fatigue relief

posted over 1 year ago

Insurance Problems

Insurance Problems

Well this is a really long story but I am going to make it short. I have Blue Cross Blue Shield of NC they will not cover my Factor for me to have on hand witch is kinda a big deal. Because I am having to miss work to go get my infusion. They are wanting me to pay a stupid amount of money every month to have it at home at witch point I could buy a new Ford F150 every month lol. But does any one have any suggestions how not to get the run around with them or what I should do

A MyHemophiliaTeam Member said:

Try SSA.gov they have Medicaid for hemophilia's, look for it. They require three episodes in the last three months. An additional check would help.

posted about 3 years ago

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

A MyHemophiliaTeam Member said:

Yes
I do. I also have vonwillebrands that is not too bad.

posted about 1 month ago