TOPIC:

Hello All, my name is Anna and I was recently diagnosed with ITP two weeks ago. I was a healthy 25 year old living a fast-paced life in Washington DC and had just started my Master’s degree when I got bruises and Petechiae and ended up in the ER. My level was 1,000. Steroids and 2 rounds of IVIG later, the doctors sent me home after 3 days with a level of 7,000.

I didn’t feel better when I was at home and the blisters and bruising and at my first appointment two days later I was back at 2,000 and admitted to the hospital and I quickly dropped again to 1,000. That was 10 days ago. They started retuximab right away, which I had awful allergic reactions to. They also tried 4 mcg of NPLATE. My numbers went up to 2,000 - so no real change. They started me in cellcept right away to target another part of the immune system. The doctors tried an experiment drug focused on the compliment part of the immune system, called Berinert which made my levels go up to 4,000 but did not have the same immediate effect that it did on other patients. My levels dropped to 2,000 the 1,000 again two days later. They then gave me the additional 6 mcg dose of of NPLATE and I had my second round of retuximab. My levels went up to 6,000 on Saturday and down to 4,000 yesterday.

I’m still in shock that my life has changed so much in the last two weeks. My mom had to fly across the country and took a month off her job to be with me in the hospital. It has already put a strain on my relationships, let alone even starting to think about making up work and school. I refuse to accept this is my new life but know that I need to start to. I feel lost, alone, anxious and scared. I know there a lot of questions I can’t get right away but hoping to find a community and support of people who know what I’m going through. Can anyone give me insight on these questions:

1) has anyone had experience not responding to NPLATE?
2) has anyone heard of someone being in the hospital for weeks with levels below 5,000?
3) If I’m not bleeding and don’t feel sick, is it safe to go home with levels under 5,000? One doctor says I should just go home and wait to respond and one doctor says they can’t advise I leave the hospital under 5,000?
4) does this sound like ITP to you? All my other tests are normal, but has anyone heard of the doctors having so much trouble getting levels past 7,000 in two weeks?
5) has anyone heard of ITP’s connection to h pylori? They said I tested positive and started me on antibiotics, today is day 9 for that. Has anyone had any experience with these two?
6) Are adults chronic? I have heard different things from different doctors.

Thank you for any help / information you can give. I feel so alone and like my case is different than anyone’s I’ve ever read. Although everyone’s is unique right? There is no right way to have ITP? Or normal response to medications?

Please help.

All these posts I’ve read no one seems to have been in the hospital for as long as I have. I haven’t had much bleeding even though my numbers are at 1,000 I know I’ve been lucky. The worst of it is the

IPT is a known side effect of H.pylori. Some antibiotics can lower platelet count, maybe count will rise once H.pylori eradicated and antibiotics out of your system.
Talk about a sledgehammer to crack a nut. 6 different treatments in a fortnight. Not given any of them sufficient time to see if they work.
Are you being treated by a haematologist or just medics who think they know what they are doing? If not a haemo ask for one if it is I'd be looking for a new one immediately.
Perfectly safe to be at home with a low count if not bleeding. I've worked 12 hour shifts on my feet all day with a count of 2.

Anna, glad you could find this web site. You will find a lot of useful information here. By the way, you should post at the adult section, where you could get more responses. Here are my answers to your questions,
1) has anyone had experience not responding to NPLATE?
>>> There is a good percentage of people, not a response to NPLATE at all. You could try to increase NPLATE dosage, it could go as high as 10 mcg per kg of body weight.
2) has anyone heard of someone being in the hospital for weeks with levels below 5,000?
>>> I saw a quite bit of people in this forum living with platelets below 10K for years. As long as you don't have any active bleeding, I don't think you need to stay at the hospital. By the way, based on my son's hematologist. Platelet count under 10K are practically the same since they were just manually counted and estimated.
3) If I’m not bleeding and don’t feel sick, is it safe to go home with levels under 5,000? One doctor says I should just go home and wait to respond and one doctor says they can’t advise I leave the hospital under 5,000?
>>> You will see a lot of posts here saying "treat symptoms not numbers". Our hematologist always said as long as you don't have active bleeding, you are fine to go home.
4) does this sound like ITP to you? All my other tests are normal, but has anyone heard of the doctors having so much trouble getting levels past 7,000 in two weeks?
>>> This happens. For my 12 years old son, the first four months of ITP, nothing could bring his count over 10K except for high dose prednisone along with IVIG. That combo only lasts for about a week, then it is back to under 10K.
5) has anyone heard of ITP’s connection to h pylori? They said I tested positive and started me on antibiotics, today is day 9 for that. Has anyone had any experience with these two?
>>> Yes, we heard that. But it is a hit or miss. Eradicate H Pylori help some, not the others.
6) Are adults chronic? I have heard different things from different doctors.
>>> ITP for children (under 10 years old) are acute in more than 80% of cases. Unfortunately for adults, most likely it will be chronic. However, most people could live a normal life with ITP, as long as you know your limits.

Good luck and hanging there. Things will get better. By the way, Ritumax usually takes a couple of weeks to kick in after your 4th dose.

acdiet12, no steroid and IVIG response is row 2 in my ITP treatments table.
bottools.com/Hal/ItpTypes.html
I would suspect that you will, eventually, respond to Nplate. Perhaps a higher dose will get it started. Taking steroids with Nplate may speed the process. As you may already know, max dose is '10'. Also, as 'th8899' mentions. High dose steroids with IVIG should also work.

As for someone else in a (somewhat) similar situation, take a look at user: 'coach-troy@hotmail.com'. He suddenly stopped posting. I suspect because he started to respond to the high doses of Nplate.
pdsa.org/discussion-group/search.html?searchuser=coach-troy@hotmail.com&exactname=1&searchdate=all&order=inc&childforums=1&limit=30&start=0

Hope this helps.

It took me 4 weeks and going from 1mcg per kg body weight to 4mcg to see first effects. Before that I was flatlining below 5. I was at home as I had no bleeding. I can feel the difference between 5/3/1 giga/Liter. At 5 I bruise a little easier. At 3 I get petechiae on my foot. At 1 I also get them on my face.
nPlate seems to need some time to get th epilate let production up. It is not instantaneous. So give it some time. Normal protocol is to increase by 1mcg per week if your count is below 50.
Don’t give up. It’s is a roller coaster but most people find something that works for them.