I'm so sorry to read this, mrsb.   Hopefully you'll find something that works for you soon.

I have terminated my participation in the PRN 1008 (Rilzabrutinib) trial. 
It is a very well organised trial  and I've been closely  monitored but with  a count of 14 last week and 13 yesterday I have failed  to meet the criteria to be offered an extension trial so there is no point me staying on it any longer.
Plus I can now stop taking the anti sickness meds. 

I am allowed to take nothing but Prednisolone for the next 4 weeks and will be monitored weekly. After the 4 week period I can take add in something else. 
I have 4 options open to me
-: Fostamatinib which kept my count above 30  (with 5mg Pred added in) for most of the trial I was on all those years ago. I had no side       effects. However I have now discovered it may affect bone remodelling and is classed as  risk factor for osteoporotic patients. Not that I can   find any research being conducted regarding this. I'm going to contact the Consultant I see at the metabolic bone clinic and ask his advice. 
-: Avatrombopag has finally ( about 4 days ago)  been licensed  over here but it will be about 12 weeks before it is available
-: Myofortic which is closely related to MMF which I've taken before but didn't like. Made me very low in mood. 
-: Rituximab 

Oh for a count above 30 and I'll feel normal again. 

Hi! 
I hope everyone is going to have an awesome thanksgiving!

I had a question. How do you talk about itp in the initial phases of a relationship? I explained it to my ex-girlfriend after 6 months of being with each other and she was totally ok with it. I suspect one reason that she had gotten used to me so this small issue was negligible for her. She was the first gf that I opened this up for. During that time I was hinting to her that I should take some precautions with respect to the foods and drugs I use.

Now I'm dating someone (ugh, from a long distance) and it is pretty much a recent thing (less than a month). She found out that I had a medical exemption from conscription (which was mandatory back in our country) and asked me about it. I postponed it to sometimes we can talk, rather than chatting.

My fear is that since we have just gotten to know each other and it is the very first stage of the friendship, she might refuse me. I honestly don't care much since I would just move on to someone better . This is something out of my control.

Anyway, how should I explain that to her? And to what extent shall I explain that to her? She has studied premed (and will enter medical college next year) and her parents are doctors and her sister is also a pharmacist, so they will know what I am talking about.  Also, I wanted to know to what level does it make sense for her to ask questions about my medical history? I don't feel comfortable explaining the very little details.

Thanks!

Hello - I've found so much helpful info and individual experiences from members in this forum so I'm sharing my latest tx try in case helpful to others...
Started Tavalisse 6 days ago - was on Promacta (eltrombopaq) for 3 yrs but dip in count to 16 prompted Heme to suggest alternative. 
No gastro, blood pressure (bp) or other side effects so far - not thrilled about possible bp rise / possibility of taking bp med.  I've seen the stats/ trial data so no huge hopes but you never know! 

FYI - My past treatment experiences:
-WinRho and then Nplate (romiplostin) push injections 1 x wk for 4 wks in prep for hernia surgery in 2016 - at 4th NPlate injection my count made it >65 for a short period - surgery completed with no issues
-Dexamethasone pulse - tried this with no results 
-Promacta - 3 yrs @ 75mg - no side effects - hit 50s a few times but counts mostly fluctuated 20s-30s   (Honestly not sure how much promacta was doing - but with no side affects and counts mostly above 25 - gave some peace of mind not to think about it or get blood drawn as often)

When I found out I had ITP three months ago, I also realized that I had diabetes, so I started a low carb, mostly plant based diet. I have lost weight, and brought my A1C levels down to normal and I am feeling better, but my platelet count has still been up and down. So the plant based diet was clearly not a cure for ITP. Currently at 70. I am really interested in learning more about the gut microbiome and its connections to ITP and auto immunity.

That did happen during the 2 weeks I was taking after knee replacement - then when stopped went back down.
But I won't be stopping the baby aspirin now - will be interesting to see how long this lasts.

Thank you both for the kind thought

Didn't the same thing happen when you were on the daily baby aspirin after your knee surgeries, Mel?
I told mrsb the same thing about giving her some of my platelets if I could!

Curious if anyone is taking a daily baby aspirin and if so how is your platelet count doing?
I started last week and yesterday my count was 179k !!!    That was a surprise as it has more than doubled and I don't like that because of those big sticky platelets.   mrsb I really wish I could share some with you!!!

I'm very sorry to hear that mrsb.

The real change since you last treated low counts is that they don't tend to use steroids for long now. If it doesn't immediately work they move on, often to a TPO. Calcium reduces the effect of Promacta. They used to say not to ingest calcium foods four hours before or after taking it, but that got reduced to say to take it two hours before and four hours after calcium unless it's changed again. Your haematologist sounds like he knows what he's doing and is following current protocol so if it were me I'd take his advice.

The diagnosis of ITP is not made unless the platelets are the only low cell line. MDS can be seen on an ordinary blood test. You'd know by now if you had it. A bone marrow biopsy would be done to look further into the type of MDS but the blood test would show it first with low red cells.

What are the dietary restrictions? Is it calcium? Otherwise, is Avatrombopag pretty much the same class as Promacta?
I downgraded from the 10K to the 5K as a compromise to my wife and mom who don't want me to run this race. So we met in the middle. I'm hoping to win my age group. Will have a pocket full of tissue in case I get a bloody nose (happens on occasion in my right nostril when I run hard).
Do you think they'll try to get me to do a bone marrow biopsy? My doc admitted that this really feels like it's definitely still ITP since I'm feeling healthy and good and that it came on so fast and not really gradually. So I hope not. 

Go for it. I gave up letting ITP rule my life ages ago.
I'd ask for Avatrombopag (Doptelet)  as there are no dietary restrictions like there are with Eltrombopag (Promacta) 

Can't see it happening Cindy. 

Now that my ITP has relapsed, and this time around my platelets are not really bouncing back like they did the first time I was on prednisone 12 years ago (yes, I enjoyed a LONG remission), my dr is thinking we should start Promacta. I like the looks of efficacy on that.
But Promacta has this little disclaimer - not to be used for people with MDS. So I'm like, "what's that".  It's a precancerous disease that turns into Leukemia.
Has anyone here ever had to get extensive treatment to ruse out MDS? What were the factors? Was it not responding to Prednisone? Or something else?

After tapering from 80mg of pred to 60, four days later my count dropped from 80 to 57.
So my doc has cleared me to run a 10K I entered tomorrow. I feel uneasy about this but I also don't want to compromise my quality of life so I think I'm going to go for it.
Back to treatment discussion, we're checking again on Mon, I'm sure it will be low, still. And then he's talking about putting me on Promacta.

I had a large drop in my platelet count after receiving a lumbar injection for lower back pain. 
Has anyone had a similar reaction? If so, did your lately level increase over time as the effect of the injection wore off?
Thank you 

I have had 3 surgeries in Canada. One for a tibial plateau fracture plate and screws inserted. A second, a year later, for removal of the plate and screws. A third surgery for laparoscopic removal of my gallbladder. Surgeons and hematologist are comfortable with surgery if platelet count is 50+. Each time I required IVIG one week before surgery as that gets my platelets above 50 for two or three weeks before dropping back to my usual count of 23 ( no meds taken and very minimal ITP symptoms for me). 

Ok now I got the explanation of the benefit letter and it seems that $1500 is my out-of-pocket. Yet the Amgen copay assist website has not shown any update on this value. Now I have more confidence that future shipments are more likely to be covered (I hope ).

Now one more thing. On the bottom of the explanation of the benefits letter, it is stated:

We reserve the right to investigate for Pre-Existing Conditions and applicable Exclusions/Limitations

What does it mean? Well, I do have a pre-existing condition, now what? Do you want to deny me coverage or charge me more, while that is illegal in the US?

www.hhs.gov/healthcare/about-the-aca/pre-existing-conditions/index.html

It seems they cannot deny, but they don't want to give the 100% assurance

I hope your course of steroid will spark the same kind of remission you got from it before. 

You say the TPO-RA drugs are new to you.  I'll tell you that I didn't decide to take one until it had been in wide use for at least 10 years.  It was just about that when I started NPlate, the weekly injection form of TPO.  I've been taking it more-or-less successfully for 8 years.  Besides NPlate and Promacta, there is now another of this type drug called avatrombopag (Doptelet).

Most recently I think, fostamatinib (Tavalisse™) has been introduced.  Rather than being a platelet booster, it aims to correct platelet destruction.  

You can read about all of the treatments currently offered on this PDSA website page ~ pdsa.org/treating-itp.html ~ and on the links connected to it.

Hopefully things will improve and you can stay on the trial.
Good that you have a back up plan.  I'd give you some of mine if we could share!

I am so sorry mrsb - we all had such high hopes for you and this drug!!

Exactly what mrsb said!
Anything unsual/odd should be checked out and not let alone!!

No Cindy 
I will give it another couple of weeks and if no improvement come off it and try Fostamatinib again. 

Aw, mrsb, I'm so sorry you're going through this!
Is there anything else you can do?

Today is week 15 of 24; my count is 16. 

Thanks. Me too. I feel normal all the way until 10 am when I take this drug. Then the rest of the day is just a rollercoaster. I start tapering off starting Saturday. You really need to be super self aware about this drug while taking it. 

Best if you attend GP surgery to get it checked out 

80mg Pred....you have my sympathies. I hope it works and you can get off it soon