I have had a lot of bleeds in the same joint recently. What is happening and what can I do to stop it?
It sounds as though what you have is called a “target joint”. Even though you may have had the “correct” treatment for joint bleeds, almost every adult today has some degree of joint damage. Once a joint has had a bleed it may take up to six weeks for the blood to be fully re-absorbed into the system. This is when it is most likely to bleed again because as the joint is healing more blood flows to the site and so a vicious cycle is set up. The way to stop this happening, once it starts, is to have prophylactic (preventative) treatment 2-3 times weekly to keep the factor level high enough to prevent that spontaneous re-bleeding. If this treatment fails, there are some other more complicated treatment options which should be discussed with your haemophilia specialist.
How do I tell the difference between a bleed and arthritis?
If you have had a lot of bleeding into a particular joint over many years, it is likely there will be a degree of arthritis there. Arthritis tends to be at its worst first thing in the morning and eases slightly as the day progresses and with movement. A bleed, even if it is not acute, gets gradually worse, more swollen and painful. If factor replacement is making no difference then it probably is arthritis. An x-ray and visit to your rheumatologist would confirm this. There are medications available for people with haemophilia and arthritis, so consult your Haemophilia Centre.
What is the shelf life of Factor VIII and IX, and how should they be stored?
Factor VIII and IX have a shelf life of two years. Recombinant products have a shelf life of three years. It is recommended that a close eye is kept on the expiry dates and when the product goes close to this date people should bring it into the Haemophilia Centre and it will be exchanged for fresher product. It is recommended that all products are best stored in the refrigerator, but time in normal room temperature will do no harm.
I can’t find a General Practitioner who knows anything about haemophilia. How do I do this?
This is not surprising considering there are very few people with haemophilia in Australia. Most GPs will never meet anyone with haemophilia unless they have worked in a hospital where there is a Haemophilia Centre of some kind. People with haemophilia are encouraged to keep themselves as educated about current trends in haemophilia and to find a GP who is interested enough to learn more about haemophilia and liaise with your Haemophilia Centre regarding your care. Your GP can also be placed on a mailing list to receive regular information on haemophilia from HFA. For people in rural areas, it is often better to establish a long-term relationship with a well informed GP than depend upon assistance from small hospitals with rotating staff.
I am having problems with my veins. What can I do?
This is sometimes a problem in older people who have had many, many venepunctures over the years, made worse by the use of “cut downs” (surgical exposure) of the veins which means they cannot be used again. It also can be because of poor health, hydration, obesity or lack of muscle tone. If you have tried to take measures in all these areas and cannot find a new vein, contact your Haemophilia Centre to discuss the options of venous access devices such as a port-a-cath. This is a small box attached to a tube which is inserted under the skin and directly into a vein. It can then be readily accessed with a special needle. This does, however, have some complications so it should be discussed at length with your specialist.
I have blood in my urine. How should I treat myself?
Blood in the urine is medically called haematuria. It is a common occurrence in some people with haemophilia and usually seems to be for no reason at all. (In people without haemophilia, it can be a sign of serious disorders.) A small amount of blood in the urine can look far more frightening than it actually is, but it needs to be investigated nevertheless. Sometimes the haematuria can be stopped by increasing the fluid intake to 3-4 litres per day and “flushing out” the system. If it continues, factor treatment will be required, but only do this with consultation with your Haemophilia Centre. It is also important not to take antifibrinolytic medication such as Cyclokapron or Amicar as these can cause small clots which can block the urinary tract and cause intense pain.
Read more about haematuria in this article in National Haemophilia.