Hello, I am new here with progressively declining platelet counts. I have been graphing my numbers since 2018. The decline is co-incident with my starting Prolia. In September of 2023 I requested to be switched to something else after finding studies listing a 20 % incidence of low platelets with that therapy.

The alternative was Alendronate (generic for Fosamax). I did lots of looking back then and it appeared to be a good choice (I didn't know about PDSA.org at that time). Of course now I have found numerous peer-reviewed studies about bisphosphonates and thrombocytopenia. Unfortunately I took Fosamax for 7 months... Now scheduled for a bone marrow biopsy the end of this month.

I don't want to discourage anyone from this class of drugs, but since this thread and the PDSA.org site does not have any references I am pasting what I have found so far (searching has been difficult due to different spellings) The last journal article states >10% incidence in its undesirable effects section:

Scholarly Articles Associating Bisphosphonates with Thrombocytopenia
(first article title has different spelling for Thrombocytopenia)
Kulkarni P, Cushman T, Donthireddy V, Rao S. Spontaneously recovered severe thrombocytopaenia following zoledronic acid infusion for osteoporosis. BMJ Case Rep. 2016 Feb 3;2016:bcr2015213786. doi: 10.1136/bcr-2015-213786. PMID: 26843222; PMCID: PMC4746530. Retrieved 6 May, 2024 from NIH.gov Website: www.ncbi.nlm.nih.gov/pmc/articles/PMC4746530/

Ferretti G, Petti MC, Carlini P et al.. Zoledronic acid-associated thrombotic thrombocytopenic purpura. Ann Oncol 2004;15:1847–8. 10.1093/annonc/mdh478 Retrieved 6 May, 2024 from NIH.gov Website:
pubmed.ncbi.nlm.nih.gov/15550592/

Bhadada SK, Bhansali A, Das S et al.. Thrombotic thrombocytopenic purpura following zoledronic acid infusion with a fatal outcome. BMJ Case Rep 2009;2009:pii: bcr09.2008.0923 Retrieved 6 May, 2024 from NIH.gov Website:
www.ncbi.nlm.nih.gov/pmc/articles/PMC3029861/

Toller, Claire, S. Charlesworth, Sarah, Mihalyo, Mary, Howard, Paul, Wilcock, Andrew (2019, May) Bisphosphonates, Therapeutic Reviews, Volume 57, ISSUE 5, P1018-1030, May 2019 Retrieved 9, May, 2024 from JPSM Website:
www.jpsmjournal.com/article/S0885-3924(19)30050-8/fulltext

Kind Regards,
Ken / Salisbury, NC USA

yes  MelA  started with 40 mg for one week then tapered to 20 mg and on it for the past two weeks and already started Promacta 12.5 mg( been 3 days). Going for weekly blood work. Hope something works but getting headaches and some joint pain with Promacta hope it just goes away.

Thanks.

"To me, nursery is basically a contact sport!!"

You made me laugh - you are so right about that!  Heck when I'd pick up my young grandson he'd run at me like he was going to make a tackle in the Super Bowl, I had to brace myself so I would not fall!!  So you can just imagine how they play with each other    

I'm very sorry your son has ITP, he is so young - know that is a big worry!  Unfortunately it is me, an adult, who has had ITP since 1989 so I really know nothing about a child with it.  I think I might be concerned too about sending him back to the nursery with a count of 16k - but I'd also not like taking him away from his friends.  Have you talked with his teachers at the nursery to see how they feel?  Are you comfortable with his hematologist or do you feel you should get a 2nd opinion?   I

I was hoping someone with experience would see your post - and I'm still hoping someone will!!  

RR are you doing a slow taper? I recall they dropped my pred way too much too fast and my count hit the gutter so had to start all over again. I'm sorry I know nothing about promacta, have only had prednisone and Win Rho.

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!!

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


So it does thank you 

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

Thank you mrs b

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

 

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 ?

 

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. 

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.

.

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!

That really is up to his doctors I think.

Thank you for looking into it, Jeff! 

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 .

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:)

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

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?

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.

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.

 

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.

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.

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

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.

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 .