I am a 22 yr old male with severe hemophilia A. I back in December started having pain in my pelvis area. I assumed it was a pulled muscle or a bleed. I treated for another bleed a couple times and it didn't get better or worse. I took it as being a pulled muscle and just needed to give it some time to heal. Than at the end of January I started having worse pain in my pelvis and lower back on my right side. So I started treating at 100% and went to the doctor to be sure it wasn't any infections or something else possibly going on. Did a UA and CBC and an exam by doctor. Everything came back fine and nothing was off whack or wrong. So assumed it was just a bleed or pulled muscle just really bad. I started treating 100% the first day and than 50% everyday for a week. Than stopped and between hours 48-72 without having treated, I would start hurting again in same area real bad. So I started up factor again at 100% level and thought this would conquer the problem within a week. So came to being this past Thursday and skipped dosing. Next day than, Friday, between hours 48-72 I started hurting AGAIN. You would think after this much treating, I would be better if it was a bleed. So Friday I did 100% dose AGAIN. I have been in contact with my HTC and they say it pry not a bleed since treating this often. I am now doing prophy which was Sunday at 50% and than now I will be doing 50% on Tuesday Thursday and Saturday for the next few weeks and see how things go.

 

Has anybody had this problem or know what is possibly going on? It wierd how I feel fine if I have factor in me and hurt if I don't after 48-72 hrs of treating. My HTC says it pry not a bleed and it something else. The next thing is to do a MRI or CAT scan and get an exact picture of what is going on.

 

If any ideas or suggestions on what could be going on let me know. Any ideas or advice would be of great help. I hope it gets better soon after time.

 

Thanks

 

Jacob Wilke

It kind of nice seeing what my factor levels are after so long of having it in me and seeing how fast it is used up when in me. Of course when having a bleed it gets used up faster and the level goes lower at a  faster rate.

A fall off study is when they do tests to see how your body responds and uses factor when it enters your body. They usually check your factor level by drawing blood before infusing medicine into you than drawing so often after having it infused in you. They drawed blood than infused me with a 100% dose and than drew at 15 minutes after infusion and than 1 hr, 2 hrs, 4 hrs, and 6 hrs after infusion. They can do any amount the doctor chooses to do. Some do 12 and 24 hrs checks also. This showed them what my half life was and how long the factor lasts in me when I treat myself. This helped them figure out how much medicine I needed for when I had surgery. They figured out how much medicine I needed infused in an hour to keep my factor lever close to the 100% level throughout the day and night.

I contacted the HTC and doing medicine is the right thing. I am on Advate for medicine. I had a "fall off" study done in March and my response to Advate was great.

Anybody experience problems with small cuts and them not stopping from bleeding? I remember when young a minor scratch or cut would stop but would just take time for it to get better and stop bleeding. Lately small minor cuts would not stop bleeding for me and I end up having to use a box of medicine just to get it to stop. I use one box which only puts me at the 25% factor level. It is enough to do the trick though. Something changing with me or are others experiencing this? I am severe with less than 1% factor eight in me and use Advate as my medicine.

 

Jacob Wilke

They have an adult hematologist at the University Hospital in Omaha. From what I have learned over the years, they not up to date or a good treatment center. I have not been getting the care or treatment I feel I should be getting from them. A good portion of hemophiliacs in Nebraska are going out of state for care they need. Options for other treatment centers are Iowa City University Hospital, Mayo Clinic, one in Colorado, etc. I just this past week switched to Iowa City, IA and was very pleased with the treatment there.

I am not sure if any of you know of this website or not. I just found out about it the other day and thought all people with hemophilia should know about it.

 

The site is called Hemophilia Emergency Care. It can be found at http://www.hemophiliaemergencycare.com This site contains guidelines for treating different types of bleeds, and specified doses by the hemophilia treatment center you go to. Also the site has the basic information on hemophilia and how to mix the medicine. The site also contains contact information for your treatment center.

 

A card with the website and your treatment center contact information can be obtained from your HTC. Contact your HTC for more info or to obtain a card.

 

Hope this is helpful to some of you.