Immune tolerance therapy (ITT) and hemophilia | MyHemophiliaTeam

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Top 10 Search Results for "Immune tolerance therapy (ITT)"

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Does Any One Have Factor Five Leiden And If So Does Your Body Respond To Pain Medication?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

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 clot. I also had to have the IVC filter… read more

I Have Von Willebrand
A MyHemophiliaTeam Member asked a question 💭

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

Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like… read more

Surgery For Hemophilia Carriers
A MyHemophiliaTeam Member asked a question 💭

Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks

A MyHemophiliaTeam Member

Your sister should coordinate her care with surgeon and Hemophilia Treatment Center closest to her. It may be wise to consider factor replacement therapy or at very leat Stimate.

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.
A MyHemophiliaTeam Member asked a question 💭

Hi, I have VWD, I have had red and purple dots for at least 15 yrs. Only on my abdomen and a few on chest. There are tons of them. Some very very tiny, a few look like cherry animolas spell?? A few raised. Most flat and never itch. Never go away completely. Sometimes they seem much worse or more prevalent than other times. Like if i take ibuprofen, which I was told not to but can't help it sometimes. My hematalogist always said its from the VWD. But that was 15 yrs ago. And i can't remember the… read more

A MyHemophiliaTeam Member

Keep your feet elevated.

Does Anyone Else Have Side Effects From Amicar?
A MyHemophiliaTeam Member asked a question 💭

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

NO ILL EFFECTS!!!

Are There Any Severe Hemophilia A Women Out There?
A MyHemophiliaTeam Member asked a question 💭

My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.

A MyHemophiliaTeam Member

My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more

Do Any Of You With VWD Experience Petechiae And Fatigue?
A MyHemophiliaTeam Member asked a question 💭

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

I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?

Elbow Pain - Older Haemophiliacs
A MyHemophiliaTeam Member asked a question 💭

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

Tremeau Phamaceutical is currently enrolling patients for study of a new Cox2 inhibitor for pain. Google them to see if there is a study site near you.

Joint Bleeds
A MyHemophiliaTeam Member asked a question 💭

I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.

A MyHemophiliaTeam Member

I have VWD and have always been told it’s a Factor VIII deficiency.

Need Help Finding Others With The Same Very Rare Coag Profile
A MyHemophiliaTeam Member asked a question 💭

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

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 stimate as it was no longer effective.