When I bring up the reply box, there are some icons just above it.  For example, an undo icon, find, select all, spell check.  In the next box beside these is bold type, underscore and a few others.  On the bottom row, there is a link and unlink icon.  Then in the next box over is the image icon, smiley, confidential and a few others.
These are over the reply box, but not on the quick reply box.

Hi ,

I was diagnosed in 2019 and have been on and off on Prednisone. Tried IViG but didn't work , then opted out of treatments for a while. Now my count has dropped to 12000 and Doctor is pushing to try Promacta. Has anyone been on Promacta for several years like say 5+? Did anyone have any issues with liver or bone marrow? Is Doptelet a better option than Promacta? She wants me to try either Promacta or Rituximab and if both don't work then she will go for other options. Please share your experience. Thank you.

I don't take Promacta but have been treated with NPlate for almost 10 years. One of its risks is marrow reticulin formation, of which I have no signs. My choice was to wait at least 10 years after the drug was introduced before I'd try it. My reasoning is that if there were major problems with it, the lawsuits would have been flying and the drug pulled from the market before 10 years passed. I may be mistaken, but Promacta has a similar period of use. Reports of either drug having serious side effects are rare in this forum, but milder side effects do happen sometimes. Those usually can be dealt with.

I tried Rituxan 6 years ago. It was a horror show for me, plus it didn't work. My experience was admittedly atypical, but I wish it could be undone.

I'm sorry I don't know very much about Doptelet. It's relatively new, and I haven't researched it. I don't plan to change my NPlate treatment as long as it continues to work. Besides, anything I would switch to would have to pass my "10 year" rule. LOL

Good luck with your decision!

Hi! I have been taking Promacta for over 6 years, tolerated it pretty well.  Today I read in the FB forum that there are guidlelines about handling the tablet: to avoid skin contact with the tablet (do not touch), even wear latex gloves if one must.  Anyone here knows why? My Hema never mentioned it, I don't think I have been affected in any way but wonder at the rationale.  My meds are mailed to me in a bottle, which is now inside a ziplock bag labeled "Hazardous material, handle with care"  Didn't use to.





 

RR01
I tookEltrombopag (Promacta) for quite a few years then lost response to it.
My main complaints with it were the dietary restrictions were a pain in the neck for someone who needs a high calcium diet, and the fact that if ripped out my iron stocks ( a known side effect) so I had to have replacement tablets. If you do choose it as a treatment make sure your Ferritin levels are checked before you start it then regularly afterwards.

I have been on Avatrombopag (Doptelet) for the last year and apart from a little tiredness (not fatigue) I have had no side effects .

The trouble with facebook is it is not a medically based site and lots of rubbish is posted on it.
Presumably you get a patient information leaflet in the tablet box. If you need to wear gloves it will say so in there. It doesn't mention it on UK leaflet.

Jeff
I cannot access my messages at all. I get a 404 message 
 

mrsb04, I appreciate your perspective, thanks for responding. The US leaflet does not mention it either. It was both the FB comment and the new label in the mailing bag that alerted me. But your reasoning seems sound to me: if there was an issue, it would be posted and communicated officially by someone.i.e. Novartis, the manufacturers.

Thank you. My ferritin levels are quite low So I guess I have to continue to take supplements then and the same scenario with my calcium too. Prednisone always brings my count up though. Hope Promacta works so I can get off steroids.

Thank you midwest6708
My platelets seem to always come up with one week of prednisone at 40 mg and then it drops when tapered. I hope something else works so I have a safe range of platelets without dropping to 12000. This is the first time going to try Promacta 12.5 mg per day.

 

RR01
Promacta can take a while to work, plus with tapering steroids on 12.5mg it might not do much at all. Protocol is start on a minimum of 25mg/day.

I always like when mrsb responds, she is very knowledgeable!

RR01 you mentioned your platelets go up on 40mg of prednisone after a week but then when taper the count goes down - what does your count go up to and how is pred being tapered?

Me too Jeff - same as mrsb - get the 404 message. And had to click on a number of things before even getting to the message section.

I just clicked on the box that says "Go to Editor..." below since wasn't sure what it was and got the 404 message there too.
Isn't it fun to update things

My 21-month-old son was diagnosed with ITP 40 days ago, initially presenting with a platelet count of 10. Subsequently, his platelet count decreased to 7, then 4, and finally 3. On April 30, he received IVIG treatment, and his latest platelet count has improved to 57. We are planning to travel from Canada to Iran. Is it safe for him to travel at this time? What would be the best time for him to travel?

Thanks:)

Jeff
Thank you I am now receiving messages . However when I looked back I'm pretty sure some previous messages are missing and only some of the ones I can see are dated .

Thank you for looking into it, Jeff! 

That really is up to his doctors I think.

mrsb is right HP - this is something that should be discussed with your son's hematologist! His count may have risen with IVIg however for how long? What if his count goes back down to 3 while you are in Iran, do you have a plan? Please do get with his hematologist, your son is so young and so new to ITP.

Please keep us posted!

.

MelA wrote:

mrsb is right HP - this is something that should be discussed with your son's hematologist! His count may have risen with IVIg however for how long? What if his count goes back down to 3 while you are in Iran, do you have a plan? Please do get with his hematologist, your son is so young and so new to ITP.

Please keep us posted!

Thank you for your response. I spoke with his hematologist in Iran, and she mentioned that 24 hours before the flight, the platelet count should be at least 70, with no bleeding at all. His hematologist in Canada said that the platelet count should be at least 40. Tomorrow, a week after receiving the IVIG injection, my son will have a blood test, and we hope that his count will be more than 70. Actually, in Iran, I have better access to specialists and even medications than here in Canada. I hope that everything goes well.

mrsb04 wrote:

That really is up to his doctors I think.
 

Thank you for your response. I spoke with his hematologist in Iran, and she mentioned that 24 hours before the flight, the platelet count should be at least 70, with no bleeding at all. His hematologist in Canada said that the platelet count should be at least 40. Tomorrow, a week after receiving the IVIG injection, my son will have a blood test, and we hope that his count will be more than 70. 

on 40 mg for 1 week it goes to 170K and then  when tapered it comes down - on 20 mg now - will know my current count tomorrow. Quick quo - they told me that promacta should be taken on empty stomach and I am a coffee freak , got ot have coffe as soon as I get up . Do you all take it in the middle of the night , does it cause insomnia and also any side effects like hair fall ?

 

RR01 Have a look at this
us.promacta.com/persistent-or-chronic-itp/taking-promacta/dosing-and-administration

 

Hi Jeff
How does one hyperlink a website address on this new system?

Thank you mrs b

pdsa.org/discussion-group/10-social-chat/31263-question-for-jeff/reply/73534.html


So it does thank you 

I too hope your son's count will come up to 70,000+ !! It sounds like you are from Iran and I know it is important to be able to go see relatives - it is good you have a hematologist there who will be able to help if your son's count would decrease!! If you are able to go I would want a count maybe a couple days after arriving just to be on the safe side. It sounds like your hematologist is good.

We did move to Tokyo and then Hong Kong shortly after my diagnosis and I was on prednisone when we left for Tokyo - but I am an adult so that makes a big difference.

Please let us know how your son is doing - I wish for you the opportunity to take this trip and that your son will do fantastic!!