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Yesterday 14:16
  • midwest6708
  • midwest6708
I've been taking NPlate for 8 years with no noticeable side effects.  I'm currently on a very small dose, less than the standard beginning dose of 1 mcg/kg.  I've never attained steady control over my counts - that is, the recommended 50k average - but it has kept me out of single digits the entire 8 years.  Sometimes count goes much higher than 50; but as long as it stays below 100, I'm willing to accept the increased clotting risk.  
Yesterday 13:16
  • ecoclayton
  • ecoclayton
I started Avatrombopag (Doptelet) in March 2020 at 20mg/Day. My counts raised a little (low 30's to 70) then the Covid Vaccines dropped them way down into the 20's. I got Covid last October and they jumped back to almost 70 and slowly dropped back to the 40's and 50's.  I upped my dose of Doptelet to 40 mg M,W,F and 20 mg T,TH,S,S and have slowly been climbing since. I am currently around 115.  I have had no side effects at all and just take my pill(s) in the morning with breakfast.
Yesterday 10:24
  • sneakerlrw
  • sneakerlrw
Thank you again for your reply pertaining to your personal experiences with the TPO agents.
Also, I did read through the article (from your link above). Very helpful information.
I will see what the next group of doctors recommend. In the interim, I will give my hip more time to heal and hope that my cycle reverts back to its former norm. 
Yesterday 09:44
  • CindyL
  • CindyL
Aw, that sucks, mrsb!  Fingers crossed your counts start going up more!
Yesterday 08:23
  • mrsb04
  • mrsb04
I took Romiplostim (N Plate) for a year the first time but stopped it as my counts swung all over the place, highest 230 lowest 6 and anywhere in between. Dose related bone pain in my hips, the higher the dose the worse the pain.

After that I took Eltrombopag (Promacta/Revolade) for 4 years. I gave that up when I lost response on the highest dose. Dietary restrictions need observing too. It played havoc with my sleep, permanently felt as if I was starting with a cold  and I developed anaemia and have been on iron tablets as a result.  

I tried Romiplostim again  for 5 months when Eltrombopag failed but couldn't stand the bone pain and gave it up with a count of 15.

Another 6 months on Eltrombopag  and after a count of 6 and ending up on hospital with a pulmonary bleed I refused to take to any more. 

Avatrombopag (Doptelet) has not yet been licensed over here but has in the US. I know it has no dietary restrictions. Hopefully it will be licensed here soon and I will give it a go. 

Good luck with what ever you decide and hope your new hip works wonders. 
Yesterday 07:52
  • mrsb04
  • mrsb04
It is 24 weeks long but in all honesty if my count does not start to climb significantly over the next 6 weeks I will be deemed as a failure and booted off 
Yesterday 00:22
  • MelA
  • MelA
You made me smile mrsb!
How long is this trial?
03 Oct 2022 17:34
  • sneakerlrw
  • sneakerlrw
Thank you for replying. I have not tried IVIG. I will bring this up with my Hematoloogist. Over the years, it has not come up in discussion.
However, I was originally diagnosed with ITP and tried Prednisone and WinRho. After my diagnosis was changed to CTP, I tried Danizol. They did not work for me. 
I share your concern about trying a platelet boosting drug with intermittent thrombocytosis. However, I may have to try these drugs. Platelets are in short supply in our area and my usage is starting to interfere with quality of life. If platelet boosters are effective for me, I suspect that my usage would then become long term, multi year.
I am out of touch with current ITP treatments and I was wondering if there were some ITP patients that have used platelet boosting drugs for many years, or since inception. Maybe there have been some studies along this line? I just haven't found them as of yet. This is one of the reasons why I am visiting the board.  
Thank you again for commenting.
 
03 Oct 2022 10:00
  • CindyL
  • CindyL
Yay!  Another increase! Is this an indication that the drug you're on is working?
03 Oct 2022 09:34
  • mrsb04
  • mrsb04
03 Oct 2022 09:33
  • mrsb04
  • mrsb04
sneakerlw
pdsa.org/platelet-growth-factors.html  gives a decent overview of the medications available. 

I don't know how you will manage your thrombocytosis part of the cycle though. There are protocol;s for dosing with different platelet counts, but stopping any of them abruptly  due to a high count can lead to a rapid drop in platelet count. 
Have you had IVIg mentioned? That generally leads to a transient rise in counts and may be more appropriate. (This is my personal opinion but may be worth discussing with your haematologist).
02 Oct 2022 11:41
  • sneakerlrw
  • sneakerlrw
It has been 15 years since I last posted on this board. I don't have ITP. I have a diagnosis of cyclical thrombocytopenia purpera with rebound thromobocytosis. During this cycle, my nadir period is severe (and always has been). My typical treatment involves platelet transfusions when my platelet counts are low. In May of this year, I had a successful hip replacement. However, the thrombocytopenia portion of my cycle has doubled in duration requiring additional platelet transfusions. Ultimately, I will head to a teaching hospital for advice. I am posting on this board to ask two questions.
1) My orthopedist said that it would take about a year to fully heal from the hip replacement. Has anybody experienced any prolonged (multi month) change in their platelet count, up or down, post hip replacement surgery? If so, did the change continue beyond a year? I am trying to decide how long to wait this out before reacting.
2) When I last posted on this board, platelet boosting drugs were relatively new. I may have the option to try these. I have to consider the thrombocytosis portion of my cycle. I also have to consider long term side effects. I thought by now there would be some ITP people with long term experience with these drugs. I was wondering if anybody could comment on their long term experiences?

I apologize for writing to the ITP board without an ITP diagnosis. Unfortunately, my situation is pretty rare with little medical research to consult. When I posted several years ago, I received much good advice (and made contact with one other person with CTP). This helped me establish a successful care plan. I thought that I would try again.
28 Sep 2022 17:16
  • packh1@yahoo.com
  • packh1@yahoo.com
I have had great success with rituxin .The first remission lasted 15 years.The second time (currently) I have have been in remission for 3 years and am hoping it continues indefinitely.The side effects were minimal and did not last long.Good luck.
27 Sep 2022 13:35
  • MelA
  • MelA
Cindy my 2nd bout was more painful - an itch type pain.   It was a larger area on my back, round & looked like a big cluster of spider bites.  The 1st was in back at my waist.  

Cindy my family doctor had it on the list of immunizations for me - but after my immunologist said not to I told my family doctor no I would not get it.   Family docs aren't that in tune with ITP.

And as Janet said, we got off track so my apologizes to Charlotte (except we are still commenting on vaccines) - however if something arises in a thread that needs attention then we must reply to that situation.  Thank you for that info Janet, I'm sure that will help others!!  And I'm glad to know my immunologist wasn't off-base telling me not to get the shingles vaccine (the "new" 2 shot vaccine, Shingrex, is the only one available now in the US - I think in Canada there is still both, but Shingrex is a lot more effective).   
27 Sep 2022 13:14
  • MelA
  • MelA
Ok, that's good - 10k is the same as the 11k so you stayed steady!!
Sorry about the bruise - I was surprised when I didn't get one after the flu vaccine, my arm wasn't even sore.   I'm still debating on the covid vaccine, whether to get it or wait to see what the human reactions are to it.  I've had 4 Pfizer shots so not sure I want to add Moderna into the mix.  I think the Pfizer one is approved here - probably ought to email my hematologist to see what he says.  My thing is neither one was tested on humans - but basic ingredients are the same as those in the original vaccines and those were tested safe.  
27 Sep 2022 10:07
  • CindyL
  • CindyL
Not much change in counts, yay!  Sorry about the bruise.  We get our flu shots next month.  I've only gotten a bruise from one shot.  No issues with Covid vaccines.
26 Sep 2022 16:55
  • midwest6708
  • midwest6708
This thread has gotten a little off track, but I hope Charlotte won't mind me adding my opinion about the newer, two-part shingles vaccine.  I don't want to talk anyone else out of shingles vaccination.  Just want to offer food for thought.

I decided I wanted the vaccine after declining it for many years, but I didn't just charge ahead.  I found a medically-reviewed article in US News and World Report from last November titled, "Why You Should Get the Shingles Vaccine Soon".  Dr. Ardeshir Hashmi, a geriatrician and endowed chair at Cleveland Clinic is quoted in the article.  He says that for people who have any sort of autoimmune disease, "the shingles vaccine, specifically, is not for them."  The entire article can be found here ~ health.usnews.com/health-care/patient-advice/articles/shingrix-shingles-vaccine

I didn't stop researching there.  I also learned that Shingrix is made with Chinese hamster ovary cells, the same as Rituxan, Humira, and some other drugs.  Since I had such an abysmal reaction to Rituxan, I'll have to take my chances with shingles itself.  
26 Sep 2022 10:13
  • mrsb04
  • mrsb04
Count is 10 today bruise from Flu vaccination last Friday one of the worst I've ever had.
Covid vaccination the week before and not a mark to be seen !!!!
26 Sep 2022 09:40
  • CindyL
  • CindyL
My family doctor is recommending both Steven and I get the shingles vaccine.  I think he says to get the 2 shot one.  We haven't discussed it in a while.
If I remember correctly, my grandmother had shingles.
Was it as painful as the tv ads suggest, Mel?
26 Sep 2022 00:40
  • MelA
  • MelA
Cindy - I was sent to an immunologist a few years back - he told me not to get the new shingles vaccine because it had not been tested on those with immune system problems - that may have changed since this was a while back.  I'll try to remember to ask my hematologist when I see him next, which hopefully won't be until the yearly check up late next year.   I have had shingles 2x already.
25 Sep 2022 11:19
  • mrsb04
  • mrsb04
You're welcome 
25 Sep 2022 10:15
  • CindyL
  • CindyL
Oh, ok.  Thanks mrsb.
25 Sep 2022 02:20
  • mrsb04
  • mrsb04
CindyL
I was directed to it from CDC site. 
24 Sep 2022 10:57
  • CindyL
  • CindyL
I had my splenectomy in 2006 and the only vaccines I get are the flu shot,  the Pneumonia every 5 years and most recently, the Covid vaccine.
I'm pretty sure I had the MMR as a child and I do want to get the Shingles vaccine.  Unfortunately, it is very expensive here and we can't afford it.
That's quite a list you shared mrsb!  I wasn't told to get any of them other than the ones I mentioned.
24 Sep 2022 03:18
  • mrsb04
  • mrsb04
Charlotte 
Have a look at this list, it should help.
www.immunize.org/catg.d/p4047.pdf
23 Sep 2022 21:07
  • charlotte
  • charlotte
It's been years since I've been on this site many years ago I had splenetomy 2016 not by choice Had emergency surgery they found my spleen enlarged My platelets are in 100's since surgery I'm now compromised immune with the pandemic it scares me Had antibody testing after booster My hemo said body didn't make antibodies Has anyone had covid after splenetomy and few symptoms?
Also when leaving hospital 2016 was not told of future vaccines to have later So if someone could let me know I'd appreciate Thank you 

21 Sep 2022 09:30
  • CindyL
  • CindyL
Yay, mrsb!
I'm with Mel, sorry about your arm!
20 Sep 2022 19:12
  • MelA
  • MelA
Nope, never heard of that being the case mrsb.   I do know that our platelets are young and sticky and big - but not that I'm more likely to have a stroke than my non-ITP neighbor.  I do know that we shouldn't be having our count go real high as chances for a stroke are higher.
20 Sep 2022 19:09
  • MelA
  • MelA
Now that's more like it mrsb !!   Way to go !!

(Sorry about  your arm - some people just should not be sticking needles in arms!)
20 Sep 2022 09:34
  • mrsb04
  • mrsb04
Count is 11 which surprised me considering the mess the phlebotomist made of my arm. 
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