Thanks everyone...good info and very supportive.

Question mrsb04....why don't you want to get to normal range on romiplostim or Eltrombobag?

I don't really remember eating more than usual, but probably did as I recall being hungry a lot. I used to be skinny as a rail, friends would joke if I turned sideways they couldn't see me (I was just naturally thin), not any more though even off pred I couldn't get back to where I was.

About 10 years after we got back home I had a good crash & needed treatment - I refused prednisone because I was not going to look like the Pillsbury Dough Boy in our son's wedding photos & I told my hematologist my dress for the wedding would compliment bruises ! That's when I got Win-Rho and it did the trick.

Same as Avatrombopag, new platelets are big and sticky ergo increase clotting risk.

Ahhh...got it. Something else to look forward to!! Thanks.

When mum was in the hospital 2 years ago, I had started to drop a lot of weight. From where her room was to where the bathroom was, was quite a walk. And there are some days I have to pee a lot, so some days I was walking the hallway 3x's or more a day. Right now, I'm a little over 200. Would love to get under that, but I doubt it will happen.

Hi LMan-
I've been doing "okay" on Revolade/Promacta. Some side effects that are bearable. Yes I already have a master's degree, but since all my degrees are art related, I don't mind doing other jobs occasionally, if it's very short term. I've done audience/ extra work, waited tables and such things. Caretaking is a different category for me, because helping people would give me more meaning in life. Good to know that that would be an option in the US. I'm currently applying for teaching jobs in Germany, because I want to save up money and feel safe at the moment. And again there's is the nice feeling of actually doing something for others.
But in the long run where is the point of being a bit more safe, if I'm not really living, and I felt much more happy and connected somewhere else.
I'll take it one step at a time, I was just wondering what my options are. It looks like it'd be reasonable to go back with some money saved up and leave if I have to. Thankfully I have both citizenships and can do that.

I haven’t been on this site for awhile but looking for feedback from those who have had multiple rituxan treatments. Had first treatment of 4 infusions in January 2016 which lasted until about May 2019. Had next round of 4 in June 2019. Coming out of my remission slowly and count today was 104,000. Dr is suggesting another round of 4 treatment with a maintenance infusion every 6 months or so. Anyone else do this? Looking for similar stories and Length of response. Thanks in advance!

My son, now 16, was diagnosed with ITP last July, after I noticed a lot of bruising (mostly on his legs) and petechiae. Our family doctor initially told us there was nothing wrong with him (after just a visual examination and questions about other symptoms), but thankfully ordered bloodwork, “To put Mom’s mind at ease.” His platelets have, for the most part, been at either 4 or 1 for the majority of the year.

We have tried various treatments, including prednisone, IVIG, Sirolimus, with not great results. He is now being watched for symptoms of Lupus, as he has tested positive for the antibody that is an indicator of Lupus, but so far, aside from the ITP, he has no symptoms. However, as they suspect it could be developing, we’re now trying Plaquenil. Since February, his platelets have gone up and down, from 15 to 23, then down to 12, then 17, and now at 12 again. At the same time that he started Plaquenil, I also started him on a number of vitamins and supplements, including a multivitamin, C, D, alfalfa, and two probiotics, but he decided to stop taking them because he didn’t think they were working (and our haematologist isn’t supportive of natural approaches either).

The doctor has decided the Plaquenil isn’t working, but is letting us stay on that until July. At that time, if there is no significant improvement, he wants us to try Eltrombopag; if that doesn’t work, the next option is splenectomy.

I’ve just ordered some papaya leaf tea for my son to try.

It’s been very difficult to persuade my son that there is actually something seriously wrong with him. I don’t know if he’s in denial, or what, but part of it is that he’s been very fortunate in his experience with ITP - he doesn’t get blood blisters in his mouth, he doesn’t have nosebleeds, or cuts that refuse to stop bleeding. A few bruises aren’t enough for him to believe that he really does have to try everything possible to get his platelets back up, and he’s convinced that it’s fine for him to go back to his regular risky activities, like playing soccer, snowboarding, and mountain-biking, etc.

I’d love to hear from other parents of teens, or from adults with ITP who maybe have had similar experiences.

If your son is going to take Eltrombopag then he is either going to have to take it in the middle of the night or adhere to the dietary restrictions.
" Eltrombopag should be taken at least 2 hours before or 4 hours after antacids, dairy products, mineral supplements or any other products containing aluminum, calcium, iron, magnesium, selenium and zinc. It may be taken with food that contains very little or no calcium." see bodyandhealth.canada.com/drug/getdrug/revolade .
Little or no calcium = less than 50mg in the restriction period. 40mls of milk contains 50mg.
Over here in the UK, much to my annoyance, Avatrombpag is not licensed for ITP unless the patient has chronic liver disease and needs a safe platelet counter surgery.
I don't know about Canada but it would be worth you investigating as there are no dietary restrictions attached.
My haemo started me on Vitamin D very early on. It is worth researching it, there is a wealth of information on google scholarly articles. Here is one for starters www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/
Best of luck. I remember my boys at that age, I could willingly have strangled them on more than one occasion.

Does anyone else get a brownish tongue and a 'bloody' taste?

93 thousand platelet level 3 weeks ago and now 30 thousand ( freaked out ) .. eating grapefruit i was told reduces the 75mg. promacta i am taking ?? anyone know about that ?? good luck to all .. rizzo

Told by whom?

Not sure about brown tongue, but used get the bloody taste sometimes. You could have bleeding gums?

Thanks. Its weird...never see blood but sometimes a brownish tinge in my saliva - mostly in the morning.

That's what happened to me Cindy - I've never been heavy until prednisone, the day of that fateful gamma globulin injection I had to get to go overseas or the company wouldn't let us go I was thin as always a few weeks later looking like I'd been beaten up and prednisone started I've never been thin again. I'm sure sure over 3 years on pred didn't help - I've heard it redistributes the body fat, but haven't heard if it ever goes back to normal once off it.