I am finishing my third year on N Plate. I am extremely lucky in that for the the last two and one half years, my counts have been above 100,000 and 90% of the time above 140,000. During that time I have been receiving 1 mcg/kg. I have had 6 occasions when my counts were above 200,000 for two consecutive weeks and then fell below 200,000 the third week. In accordance with N Plate's parameters I would have reduced 1 mcg which in my case would have meant no injection. My hematologist and I have discussed going to a 1 mcg/kg injection every other week but were hesitant to do so during the pandemic. We are now discussing it again. I was wondering if anyone has experience or knows of someone who has had a similar situation and what happened when they spread out their injections from weekly to something longer? My hematologist said he had two patients whose counts dropped severely and then stabilized and came back up somewhat after doing so.
Thank you

I did it like that. Did injections further and further apart up to about once every five weeks and then stopped altogether. My counts didn't drop low at that time but stabilised around 80. Counts did drop again a few years later and I did nplate for a few months and when my count went too high, I stopped again.

Can I ask what your counts were before you started to stretch out the injections? Did you see a drop each time you lengthened the time between injections?
Thank you very n=much for responding.

www.clinicaltrials.gov/ct2/show/NCT03395210 

Started the trial this morning, I am in Part B

WAHOOOOOOOOO !!

I am so happy for you mrsb !!

Why is it taking so long (days or weeks) for someone to be notified that they have a new message??
Thanks!
Melinda

I get Nplate weekly but have been getting less than 1 mcg per kg for years.  I weigh 61kg and my dose is 40 mcgs.  My counts are rarely in the ideal 50 range.  They're generally between 60 and 100, which is okay with me.  When the counts begin moving above 100 with regularity, the dose gets dropped by 5 mcgs. Skipping doses makes them even more erratic and is unacceptable to me.
My point is, success can be had with doses of fractions of 1 mcg per kg.

Congratulations!   Wishing you success from it.

Hello everyone,
Has anyone had any treatments that worked " TOO WELL"?  I was diagnosed about 1 year ago.  After receiving 2nd Maderna vaccine my platelet count dropped to 15k about 30 days later. I was given Dex Pulse treatment for 4 days and my platelet count shot up to over 800... Hemo was very surprised at my response. Next treatment was IVIG, again platelets shot up to over 800 in 2 or three days. Next, Promacta 25 Mg per day. Platelets shot up to 1 million in just a few days. Stopped that immediately... Now trying Nplate tweeking doses. 2mcg /kg shot me over 1million again. Stopped that immediately. Last injection at 1.5 mcg/kg has not worked at all. Platelets down to 25 k today. checking again tomorrow. I have never had any bleeding problems, only petichae on my lower legs when under about 30k. Thank you in advance for any replies....   

Did you ever try a much lower dose of cortisone, since your previous treatments seem to have been too much? Ask your doctor about it... Good luck!

I don't understand how the waiver would help you, if you can't take the classes you need... There were several people who wrote something about their experience with the tetanus vaccine. I got a booster when my ITP was pretty bad, but can't say for sure whether it got worse from it. And our experience isn't necessarily yours. I don't know if it's a problem to take MMR if you don't know whether you had it. I would want to know that.

Sorry no cat here, my experience with Eltrombopag: Only thing that was stable for me (tried Dexa, Pred, NPlate), but diarrhea, bone pain, joint pain, I could barely walk or sit straight for a long time, hair stopped growing on my upper body, hormone problems etc. My hema first didn't believe me, because apparently other patients of his didn't have the same experience. Later he wanted me to switch to Ava but I didn't need anything anymore. And it takes a couple weeks to work, so for medical treatments only maybe not ideal?

Mrsb04 did your bowel actions stop when you quit Eltrombopag?

Exciting, I hope it goes well!

That is super news, mrsb!  Hope it works for you!

Why not get your doctor or hematologist to order the titer test for both the MMR and DPT - that way you know if you have immunity!   My immunologist ordered those tests since the tetanus booster sent my platelets to the gutter & had to treat for the 1st time in years - even though it had been 10 years since I had that tetanus booster I still had immunity!!      And why not ask your hematologist about these vaccines - he/she would be the one to tell you if they should be safe or not.    As ImPatientid "And our experience isn't necessarily yours"

Is there a titer test for Dtap?Description. A Tdap titer is a blood test that checks for immunity from prior vaccination or infection to Tetanus, Diphtheria and Pertussis.


The MMR Titer is a blood test that checks if you are immune to Measles, Mumps and Rubella. It measures your antibody levels to get a sense for whether your immune system has the capability to respond to an infection with one of these diseases.

Jeff when I tried to get on the forum this morning I got an alert that the site was not secure and I was stopped from entering.
Is the site secure - is the certificate date valid?   I did get in now.

I tried to post the message but can't figure out how to post it here as it is not a url  - I  used snipping tool to copy it and put it in an email so I'd have it.  It said "Your connection is not private"   NET::ERR_CERT_DATE_INVALID

Thanks Jeff

How far apart were these different treatments given?

Hi Jeff - Sorry, I had forgotten the Conference was going on.

I sent a private message to a member and she said it took a while for her to get notice that she had a new private message.  So it would be concerning a private message notification.  So far when I have received a new message I am getting a notice right away.

Thanks Jeff!
Melinda

Great Jeff - thank you!!

(If I could delete this thread I would)

Melinda

ImPatient 
Yes I returned to my normal pattern. 

Thanks for all the replies.  I believe that some doctors try to gloss over any side effects. When I asked the new hema about side effects, the ONLY thing he said was that the one had to be taken with a meal containing calcium.  Did he not think that we were going to do the research?  In my personal opinion, sometimes I think that getting the 'numbers up' is a feather in the doctor's cap but the patient is not fully considered. The list of side effects of these drugs is a mile long. It irritates me that these were not even mentioned or discussed with us.

The other thing I read about is the frequent bloodwork getting the dosage correct. My husband's veins are already tough as leather because his original hema many years ago wanted bloodwork every 2 weeks. This went on for a few years until she wanted to do some exotic test every time he had an office visit....24 hr urine catch...things like that. What does that have to do with ITP?  There was nothing else in his bloodwork that would warrant any other tests. ITP is ITP.

No real info in this post...just venting...or maybe blogging!

I had to over ride my security to get in yesterday too.
No problems today!

I put my computer clock back to 31st July and that let me in. Got in normally today. 

Luvmycat you may vent any time you want, we don't mind - it is nice to know others going through the same thing, not to mention it IS frustrating!!   

Does anyone have neck and shoulder pain along with joint pain in your fingers and knee. I am thinking maybe I got RA . Does anyone have arthritis along with ITP? Since ITP is auto immune wondering if RA is an easy possibility as well?

I've only got joint pain everywhere since I used Eltrombopag, so for me I think it's probably a side effect that persists and can be fixed someday. Eating salmon and tuna helped a lot, I actually stopped being vegan after 17 years, because it improved my pain and my platelet level.

My counts were over 100 for a few months, testing only every four weeks.. 102, 136, 102, 103 etc. So I did every other week for a while.  Then as they stayed over 100 stretched it out further. Eventually my count went over 200 so I stopped altogether. We don't inject if over 200.  I was then off it for over four years and crashed down to 1. Did Nplate again for eight weeks, count 184 and stopped.