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Real members of MyHemophiliaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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?

Does Any One Have Factor Five Leiden And If So Does Your Body Respond To Pain Medication?

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

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

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

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.

Does Anyone Else Have Non Itchy Red/purple Dots. Always There.

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?

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

NO ILL EFFECTS!!!

Are There Any Severe Hemophilia A Women Out There?

Are There Any Severe Hemophilia A Women Out There?

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

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

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

Joint Bleeds

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

You can research it on Google. It’s a factor 8 Deficiency, if you have internal bleeding or heavy periods you can take medications to add factor 8, or sometimes people react well to stimate. Swelling… read more

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.

A MyHemophiliaTeam Member

All Factor products available in the United States are safe from Hep C and HIV. Nuwiq is manufactured from human cells, but is not from human blood plasma. Even plasma derived factor in US is heat… read more

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

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.

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

Check with your local Hemophilia Chapter for help with insurance issues.