Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Need help with mercaptopurine

More
15 years 3 months ago #792 by toffeegirl
Need help with mercaptopurine was created by toffeegirl
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

Please Log in or Create an account to join the conversation.

More
15 years 3 months ago #798 by CindyL
Replied by CindyL on topic Re:Need help with mercaptopurine
That was Simon. He hasn't been here to the new site yet. The old site is still available for reading, and if you have access to it, you might find Simon's username 'cause I don't remember it.

What about a 2/3 day dose of IVIG? I see you have reactions to it, but in this situation, would it work? That's what I get when I need to bring my counts up for surgery.

I hope you get your numbers up so that you can get your surgery done!

Please Log in or Create an account to join the conversation.

More
15 years 3 months ago #799 by toffeegirl
Replied by toffeegirl on topic Re:Need help with mercaptopurine
I tried Sandoglobulin, a newer IVIG, just before my first surgery booking,but my counts instead of rising went backwards... from 62k down to 45K. My anxieties about a 8 hour operation probably play havoc on my counts.

Please Log in or Create an account to join the conversation.

More
15 years 3 months ago #800 by toffeegirl
Replied by toffeegirl on topic Re:Need help with mercaptopurine
Thanks for the info re: Simon
Hope you're doing well. I just read that your counts are coming up. Way to go!

Please Log in or Create an account to join the conversation.

More
15 years 3 months ago #801 by toffeegirl
Replied by toffeegirl on topic Re:Need help with mercaptopurine
I must be suffering brain fog.

I'd forgotten about a post I'd made entitled Feeling Blue. Thank to Juliannemom, Katie57, foursons,Melinda,KimL, and CindyL for you kind thoughts and prayers. They are so very much appreciated.


KimL, thank you for sharing your experiences with 6-mp. You've given me hope. I'm am going to start taking it next week. :)

Please Log in or Create an account to join the conversation.

15 years 3 months ago #809 by
So you are now toffeegirl Judy - I love toffee too, my daughter in law makes THE best!!

I went to MedlinePlus to look up Mercaptopurine and found this:
www.nlm.nih.gov/medlineplus/druginfo/meds/a682653.html

Scroll down to Other Uses and it says:
"...idiopathic thrombocytopenia purpura..."

Hope you can get your count up and the surgery out of the way!!

Please Log in or Create an account to join the conversation.

More
15 years 3 months ago #844 by toffeegirl
Replied by toffeegirl on topic Re:Need help with mercaptopurine
Thank you, Melinda! I'll check it out.

Please Log in or Create an account to join the conversation.

  • Kim
  • Offline
  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
More
15 years 3 months ago #849 by Kim
Replied by Kim on topic Re:Need help with mercaptopurine
mercaptopurine (purithol or 6-mp) is an older drug, although it could be effective.

I used 6-mp from 1993-98 or 98. It worked for me, but I did not get counts above 100. I was at about 70-80, but I've had a really tough time getting my counts above 100 for 24 years. I had minimal initial side effects, such as mild stomach upset, but if I took it with food, I did OK. If I remember correctly, it took more than a month to get my counts to the highest they would eventually end up and I do think the doctor started out with a low dose and increased. I did end up with creeping counts after about 1.5 years of using it, but the doctor increased the dose again and my counts went back up to the 70-80 range, but they did creep down again. Since I was at the maximum dose, my counts just continued to creep down, until eventually they wee only holding around 30k, so I stopped the 6-mp after 5-6 years of using it.

I tried imuran after the 6-mp, but it did nothing for my counts. I went through several immune suppressants and none of them worked as well as the 6-mp did when I started on it.

I hope it works for you.

Please Log in or Create an account to join the conversation.