That was my thought on it as well Adam. While I don’t think he had ll the info, the information he is sharing is backed by other doctors and studies. It’s nice that people are trying to look at the underlying causes instead of just throwing heavy medications at people.

Well darn it mrsb!
I hope your count improves!!

13 years ago I was diagnosed with ITP, and went straight into a remission after tapering off my first go at Prednisone. I always felt lucky about this. And I always felt that it could come back at any time. And this week it did.

After doing some research, it doesn't look like much progress has been made in terms of treatments. I'm seeing the same old stuff. I am seeing TPO-RA drugs like Eltrombopag (Promacta) for the first time.

Anyway, trying to figure out what's new. I feel I got pretty lucky going into remission after prednisone back in 2009. Would love for that to happen again of course, but that would seem extra lucky.

Thanks,
Mark

Thanks!
I confirmed with Optum again (and had previously confirmed with UHCR as well). The first bill is now pending and let's see how would it unwrap.
And interestingly this time they told me my copayment is 0 and not I have a good feeling that it is getting fixed!

Mark what is your count now?

When I checked into the ER on Tues: 10K
Wed morning in the hosp: 1K 
Thurs it was 16K
Friday it was 26K and I was discharged. That's the last number I've seen. I go in for CBC on Monday AM.
I'm on 80mg prednisone right now

Hopefully, the first shipment is now processed and the paid amount was changed to some $9500. Keeping my fingers crossed that it is working! My out-of-pocket balance is now 0 but the explanation of the benefit is yet pending.

You did relapse for sure, sorry!   Hopefully the prednisone will treat you well and give you another remission!   A tetanus booster dropped mine back down years ago, I refused prednisone and was given Win-Rho and that did the trick - not sure if they even use that any more! Keep us posted - hope you get some good news on Monday!

hurting and numb ness on side of leg with a black dot on vein  every night in bed numb, pins and needles with split veins on left thigh above knee,

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

Best if you attend GP surgery to get it checked out 

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. 

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

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

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

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

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

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 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.

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 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). 

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 

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.

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?

Can't see it happening Cindy. 

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) 

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. 

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.

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.

I'm very sorry to hear that mrsb.