Hemophilia

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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

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

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

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

For Mild Hemophilia- females- How do you know when to treat, what symptoms do you experience that you relate to a bleed?

As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more

A MyHemophiliaTeam Member said:

Interesting since I had a total hysterectomy to resolve nonstop menstrual bleeding and now my last factor level was like 120....... I think that is why… 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

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:

I get my factor thru biogin,it's factor 8 but I figure they have others. I take it weekly and it has been a god send.it's a fusion factors made from… read more

posted about 2 years ago

How do I discourage my 17 yro. Severe Hemo. A son, not to buy a motorcycle?

How do I discourage my 17 yro. Severe Hemo. A son, not to buy a motorcycle?

.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument.
This would not happen right away, but probably within the next 6 to 8 mos.
I am searching for help from… read more

A MyHemophiliaTeam Member said:

I just joined this sight and I saw your post from over 2 years ago. Having had motorcycles since I was 10 made me curious of your outcome. I am Severe A… read more

posted about 1 year ago

Has any one had a second knee replacement done? What was the life span of your first one?

Has any one had a second knee replacement done? What was the life span of your first one?

A MyHemophiliaTeam Member said:

I posted on this forum that I had both knees replaced. The first one 20 years ago and the second one 5years ago. It was the second one that developed… read more

posted 11 months ago
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