Hello everyone
I've been reading the posts for years and have always been impressed with the amazing amount of knowledge, wisdom and compassion on this site. I need to tap on this knowledge right now.
My hema is putting me on an immuno-suppressant, mercaptopurine. I've tried IVIG products, WinRho, & prednisone, but I had to taken off all of them because of a variety of reactions. I need to get my platelets up over 100k to undergo neurosurgery. My hema was going to prescribe a massive round of preds to raise my platelets, but my neurosurgeon said the steroids would inhibit the healing of the arterial by-pass and could perhaps cause the new artery to atophy.
The one good note about having low counts (around 5K) is that my neurosurgeon feels my low counts are doing a good job in keeping the blood and oxygen flowing to the collateral arteries around the clot and keeping me from stroking. But with this time bomb ticking away in my head, we need to start on something to raise the platelets for surgery.
Has anyone tried mercaptopurine and had any success with it raising platelets 100k or over?
I remember reading posts from an ITPer in England who was training to be a specialist in ITP. I'm sorry I can't remember his user name. Would someone put me in touch with him? I'd like to know if he has any current information about mercaptopurine and raising platelet counts.
The drug monologue from my pharmacy lists acute lymphocytic leukemia, Crohns disease, ulcerative colitis and lymphoblastic lymphoma , but nowhere does it says it will help with platelet production. In fact the sites I googled have warned of the following:
Common side effects:
With this drug, many people have a temporary drop in the number of blood cells made by the bone marrow, leading to the following side effects
Increased risk of getting an infection from a drop in white blood cells - it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery.
Tiredness and breathlessness due to a drop in red blood cells (anaemia) - you may need a blood transfusion.
Bruising more easily due to a drop in platelets - you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia).
My hema chose mercapto6 over immuran because the first drug works faster... 1 month as opposed to waiting 3-4 to get a rise in platelets. With the seasonal flu shot in Nov., H1N1 shots in Dec, and catching a bit of the H1N1 plus some my kids and husband having January cold, it wasn't a good time to start an immunosuppressant.
I've been following the rituxan files and asked my hema if he could apply for Exception Drug Status but he said the rituxan costs were so astronomical that it would never be included in our province's health plan and that Health Canada didn't have empirical evidence proving Rituxan is able to bring on remissions. As far as Health Canada is concerned, Rituxan doesn't raise any longer than conventional IVIG products. So I'm stuck with trying immunosppressants.
Sorry this is such a long note, everyone! Thank you to all who respond.
Toffeegirl ( formerly know as Judy51... thought I'd change the handle cause I'm now closer to 60 than 51, and I love homemade toffee so hence the toffeegirl name