Thank you Midwest. That's a horrible experience...I really appreciate being able to read it. Definitely gives me more insight to Rituxan. I hope you're doing ok now.

Lot of pondering to do...

Thank you for you information.
I have discussed with my doctor, he mentioned there was no new drug available in Hong Kong for ITP.

I have performed 2 blood test in May 2020, details are as follows;
9 May 2020: 252 (result from body check)
23 May 2020 :221

The combination of my treatment:
a. Cyclosporine A - 200 mg daily (am: 100 mg, pm: 100 mg)
b. Azathioprine - 75 mg
c. Eltrombopag - 25 mg daily
d. Prednisone - 5 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Hello I am new to this forum.
I am a 50yr old frontline emergency services worker in Canada who has been dealing with ITP for the past 9yrs. My numbers have been consistently between 70 and 84. They think it was the mono virus that was the trigger although that’s an assumption as they never really tested me for other things other than having a bone marrow aspiration. I experience bruising with minimal contact with things and extreme fatigue although much of that is likely through the fact that I am a shift worker working 12 shifts.
I was encouraged by my hematologist 9yrs ago advised that I could continue in my profession as long as I didn’t get into anything to ‘physical‘. At the time I was relieved and anxious to return to work, but in doing so I have found it stressful trying to manage my health on the job. With the pandemic here I find it even more stressful as there seems to be so much information that we still don’t know with the virus and my increased risk with trying to manage this. I am currently assigned an admin role until my doc and hematologist can update me with a possible safe return.
Are there any other emergency service workers out there with any advice? I don’t really know how concerned I should or should not be in my profession while trying to manage ITP.

Thanks,
Bryan

Hello and welcome, Bryan Thank you for your service! I cringe every time I see the cases rise in Ontario. I have family who work in different cities who are front line workers. I can't imagine the stress you are feeling right now. I don't have any advice for you, but I know there is nurse on here from Ontario. Hopefully, she'll chime in.

Thank you for the welcome Cindy.

We'll be interested in what you decide. And of course, wishing you the very best outcome!

BDP did you read the info on the virus - if you go to the top of the page, click on COVID-19 & ITP; Resources and News in the light pink box.

Are you treating now or is the 50-80k what your body does without help? My daughter-in-law is an RN, son a former EMT - not easy jobs you all have/had.

Take care and get some rest

Thanks mrsb. Our haemotologist didn't tell us anything about the dietary restrictions with Eltrombopag. I did read about that on another discussion post though, and my son says he is prepared to wake up in the middle of the night to take it. We'll see!

It's also helpful to know that your doc recommended taking vitamin D. I wish we had a doctor who had a more holistic approach. But maybe if I tell my son that other doctors do recommend vitamins, he'll be more willing to try it again.

I don't think vitamin D is a holistic approach - my understanding is that those of us with autoimmune disorders need vitamin D. A couple years ago I was tested and my D was below the normal range, I was put on a high dose of D3 once a week for a while & tested again, it was in the low normal range & I was told to stop the high dose & take D3 at 2000 IU a day (not telling you to have your son take it - or to take that dose - he really should have blood work to see if in fact he does need D).

I was told not to take a multi-vitamin with E in it - and lately I was told by the eye doctor to take a vitamin that had a lot of E in it and my hematologist nixed it because of the E. Vitamin E reduces blood clotting.

Your son is at the age of being invincible All go through that stage - our younger son was diagnosed with mono in high school and continued his summer job which he shouldn't have done as the risk was high for a fall & his spleen very enlarged. Has your son's hematologist told him to lay off some activities?

It is hard enough for an adult to come to terms with ITP (I've had it since 1989 so now it is just a part of me) but for a teen or a child it has to be harder. Sorry your son (and you) have to deal with this. The best to you both - keep us posted!

Thanks. I guess my use of the term "holistic" wasn't quite accurate. I was meaning more that our doctor is only concerned with drugs/medical interventions, and doesn't give any importance to nutrition. I think that everything we put in our bodies has the potential to have an impact on our health.

My son has been told not to participate in contact sports or activities that put him at increased risk for injury, especially head injury. So he stopped with soccer and basketball, and wasn't allowed to go snowboarding this winter. But now he's been mountain biking with his friends, and had a big wipeout going off a jump, in which he his his head on the ground. Thankfully he did wear a helmet, even though his friends didn't. (He had video evidence, or I wouldn't have believed him!)

Only thing I've been told about nutrition was no vitamin E in a multi-vitamin - no large amounts of vitamin E.
I do feel that if we [or those without ITP] are going to add a supplement that is more than required daily amount that they first discuss with their doctor - or ask the doctor for a blood test to determine if more is needed. Too much of something can be a bad thing.

I had to smile when reading about your son and his mountain bike - yes, invincible Snowboarding, our older son was a boarder, younger a skier - older a skate boarder, younger a mountain biker and raced - so if you are turning gray I know where those gray hairs came from (I do prefer to call them sparkles). Maybe your son will skip the jumps while mountain biking after this fall! Thank heaven he was smart and had his helmet on - good for him!!

What I find interesting is my ex-brother-in-law, a non-ITPer, had a brain bleed from a fall and hitting his head on the tile floor of his kitchen, that caused a brain bleed that went on until he finally went to the doctor a week or so later - I fell down basement stairs & hit my head on a step with metal edging and did not have a brain bleed - 2 years ago I missed a curb and fell into a rock planter breaking my shoulder and hitting my head on who knows what causing intense bleeding running down my head & face and required 3 staples to shut the wound and I did not have a brain bleed (the ED where I was taken did a CT due to my ITP). My count with the head wound was decent, can't recall 80k or 90k?, so that was good. Guess what I'm trying to say is - who knows what will happen.

Vitamin E can reduce the platelets role in blood clotting.
It would definitely be worth getting his Vitamin D level checked however

It would be good to have the D level checked since those with autoimmune disorders can be low.
Yeah, that's what I mentioned Anne about the E - I'd get broken blood vessels on my palms and back of fingers and my doctor said stop the multi with E in it, I did and that stopped.

Decided to try Rituximab (Truxima). Went in today to start treatment. However, platelet levels were 850 (had nPlate injections last week and week before). Hematologist canceled treatment today and will retest next week. Cant imagine high platelets are good either?!?