My Latest NPlate Responses

Not moving towards remission just frustrating. Convinced my hematologist to lower my Nplate shot threshold to 40.


42 x10'3/microL

Date:
Sep 28, 2017 04:37 p.m. CDT




75 x10'3/microL

Date:
Sep 19, 2017 04:39 p.m. CDT





22 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Sep 07, 2017 04:49 p.m. CDT





27 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Aug 10, 2017 04:38 p.m. CDT





37 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Jul 13, 2017 04:39 p.m. CDT





58 x10'3/microL

Date:
Jun 29, 2017 04:39 p.m. CDT





30 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Jun 15, 2017 04:33 p.m. CDT





40 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
May 25, 2017 04:35 p.m. CDT





64 x10'3/microL

Date:
May 11, 2017 04:38 p.m. CDT





31 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Apr 19, 2017 04:46 p.m. CDT





35 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Mar 30, 2017 04:44 p.m. CDT





51 x10'3/microL

Date:
Mar 22, 2017 04:54 p.m. CDT





145 x10'3/microL

Date:
Mar 08, 2017 04:47 p.m. CST





91 x10'3/microL

Date:
Feb 22, 2017 04:40 p.m. CST





25 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Jan 30, 2017 04:08 p.m. CST





82 x10'3/microL

Date:
Jan 24, 2017 04:37 p.m. CST





15 x10'3/microL (NPLATE 2.9 MCG\KG OR 1 VIAL 250MCG GIVEN)

Date:
Jan 10, 2017 04:47 p.m. CST

Why not increase N Plate dose?

Gosh, what an amazingly slow response decay. So slow it seems hard to think your immune system has it out for platelets - just TPO.
Interesting data Jay. Thanks for posting.

so Hal you are convinced I am type 3?

What are my options will splenectomy work for me?
Iam thinking of Danazol or cellcept to combine with NPlate.

My Hematologist is scaring me into rituximab but iam insistent with my steroid response, I don't want the aggravation of rituximab.

Interesting to see the way you are playing it. I did it differently. If my count had been something like 75 I would have still dose but a smaller dose. I didn't miss a dose until my count went over 130 or so. It was the steadily reducing the dose that eventually got me off it altogether. But there are no real rules except to be patient!

jayinchicago wrote: so Hal you are convinced I am type 3?

After thinking about it some more I would say no. I suppose an improving type 2 is possible too. If you try Danazol and get a strong response then that would confirm type 3.

jayinchicago wrote: What are my options will splenectomy work for me?

Your guess is as good as mine.

jayinchicago wrote: Iam thinking of Danazol or cellcept to combine with NPlate.

I was originally thinking of Danazol and Promacta for myself. Realize that if one gets a strong response to Danazol then NPlate won't be necessary.
When I asked my hema about Danazol risks she mentioned clots. So combining Danazol with NPlate could be pretty dangerous from a clot perspective.

jayinchicago wrote: My Hematologist is scaring me into rituximab but iam insistent with my steroid response, I don't want the aggravation of rituximab.

Yes, Rituxan looks like a waste of time, money, and an unnecessary risk here. When I was considering it, and knew what I know now about the treatment response groups, I would have never taken Rituxan. I would have gone straight to Danazol or Promacta.

I think that if something is working to keep counts in a safe range, you should stick with it and use the lowest possible dose. Keep toxicity to a minimum. Having used most of those drugs that you guys are talking about, Rituxan, Danazol, CellCept and Prednisone, I've seen first hand the damage that they can do. I experienced it. If I could go back and do it all over again, I wouldn't have done any of it. I wasn't lucky enough to have Promacta or N-Plate back then and I can tell you from observing here, they have been a life-changer. I've seen countless people go down the entire treatment line, using all of those and getting nowhere only to end up on the TPO's at the end and finally see stability. I always hoped they'd start using them at the beginning to avoid all of that and now that they are, people want to rush through it and move on. You may not know it but this is it. The TPO's can be the best option. Sure, Rituxan can give the odd person a long remission but the majority get about a year or no response at all then you're back to square one. ITP doesn't have a quick fix, it requires patience and in the meantime, you manage it. People with ITP today have such an advantage and it's a shame that you don't know it.

All of the immunosuppressants raise the risk of cancer down the line. If the risk of the treatment is greater than the risk of the disorder, is it worth it?

Hi Jay,
My two cents: My Hema also wanted to go the rituximab route after my IVIG rescues and dex blasts faded. The more I read the more it scared me. He was very willing to start Nplate instead. I have been on it for 10 weeks NPLATE 1.0 MCG\KG and getting 98-144 numbers. I was just wondering about what side effects you might be experiencing? I ignored mine until recently but wow they caught up to me yesterday. Numb feet & lower legs, muscle aches, brain fog, some gut pain in the lower left, and turpentine breath, and some headache. I can't imagine 2.9 dosage. What side effects might you experiencing?

Can they lower the dosage? Your counts are high enough...too high, actually.

I beat the nurses ear on my last visit about a lower dose. However the Pharmacist seems to be in charge and is following the Nplate protocol exactly as published. "MAINTAIN
If platelet count is 50-200 x 109/L, "
I also tried to get my CBC draws reduced from weekly to monthly based on the exact same protocol but that was not agreed to either. My current weekly regimen consists of a 15 mile drive, 45 minute wait for a blood draw, 1 1/2 hour wait for injection on a good day. The same health system has a smaller office only 8 miles away, I spoke to them yesterday about switching to their building but I would have to change my Hema to one that goes there. I have no problem with that as long as they co-operate with what I think is best for me with their advice taken also. So far my MPV has never been higher than 7.3 and I have been on aspirin for cardiac issues for 15 years so I am not too concerned about the big sticky ones quite yet. I am a little mystified why my RDW is rising each check and is now high at 15.0 , Thanks for asking!

Hi Thomas,

I dont have any side issues at all.
But your responses are excellent, I think you have a very good chance of complete remission.

Thomas - Have you had your Folate and B-12 levels checked lately? A high RDW can indicate a deficiency in either of those. Low B-12 could also account for some of those symptoms you're having.

It's not fair to keep you on a higher dose with bad side effects when you could possibly use a lower dose and feel better. It's all about balance.

Thomaskm
UK guidelines for dosing Romiplostim
Action following platelet count
< 50 (x 109/l) :Increase once weekly dose by 1 μg/kg
> 150 for two consecutive weeks :Decrease once weekly dose by 1 μg/kg
> 250: Do not administer, continue to assess the platelet count weekly
After the platelet count has fallen to < 150 x 109/l, resume dosing with once weekly dose reduced by 1 μg/kg