Prophylaxis

Well, after some time and experimentation I thought we might finally be getting somewhere with my bleeding control.

I've been taking prophylactic injections to manage my periods ever since coming off the pill last year. My specialist initially advised me to try 1000 units of Haemate P every day while I was bleeding. Haemate P is heat treated factor VIII concentrate and one bottle contains 500 IU of factor VIII and 1200 IU of von Willebrand factor:RCoF (ristocetin cofactor activity - don't ask me to explain this, I'll look it up! This link has some info on the pathology of vWd: http://www.massgeneral.org/pathology/coagbook/CO006200.htm).

I can't have recombinant (synthetic) factor products because they don't contain any vW factor and wouldn't be of much use to me. What I need is the factor VIII, the vW factor and the RCof activity - all of which can be found in heat treated factor VIII concentrate. My specialist at the QE was confident that 1000 units per day would be enough to calm down the bleeding. I wasn't entirely sure. I've had problems in the past where - even with treatment - I continue bleeding; with gums and nosebleeds and when I've had surgery I have stopped bleeding, only to start again with a vengeance.

For the first eight months of 2006 I injected 1000 units, about 40ml once dilute, every day of my period and felt that whilst it might not have been quite as horrific as when I was a teenager, I didn't feel it was making a huge difference to the amount I was losing. It became hard to carry on at work because I was bleeding so often and so heavily. I kept having to run from my desk to get to the loo, excusing myself pretty sharpish whenever I felt anything flooding out. I carried a handbag everywhere that weighed a ton due to the amount of sanitary stuff in it.

At the Haemophilia Society AGM in September I spoke to a friend of mine who is a clinical nurse specialist, she said in her opinion I wasn't having nearly enough factor to control my bleeding, confirming what I thought. However when I spoke to my doctor he wasn't keen to do any testing of my levels - to really investigate how my factor levels were affected by the treatment. He did suggest that I try 1000 units for 7 days and then do 2000 per day after that until it stopped. His concern was that with increased factor my factor VIII levels would be going too high and that there could be other reasons why my periods were so heavy. Fair point I thought and tried the new regime.

The first month it seemed to really do the trick. 9 days of v heavy bleeding, clots and flooding as per usual but then after three days of 2000 units it slowly calmed down and then stopped. 12 days! Yippee, I thought, we've done it!

The next month it had exactly the same effect, 10 days bleeding in total - still heavy but sooo much better for my sanity and sanitary. Hehe!

The next month I hit 10 days with gusto, 12 days still bleeding, 13, 14 with no sign of stopping, until boxing day when I finally clammed up. What was the bloody problem now??

I was due to see my specialist again in January and I was intending to use my 'patient power' ....