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  • kclifton
14 May 2024 10:54
Replied by kclifton on topic Fosamax
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
  • RR01
13 May 2024 18:02
Replied by RR01 on topic Promacta treatment
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.
  • MelA
08 May 2024 16:38 - 08 May 2024 16:39
Replied by MelA on topic Return to nursery

"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!!  
  • MelA
08 May 2024 16:24
Replied by MelA on topic Promacta treatment
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.
  • MelA
08 May 2024 00:24
Replied by MelA on topic Long flight with ITP
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!!
  • mrsb04
07 May 2024 08:42 - 07 May 2024 08:43
  • Jeff
07 May 2024 08:22 - 07 May 2024 08:23
Replied by Jeff on topic Question for Jeff
Does it work to just copy the website URL from the address bar and paste it into the box?
pdsa.org

Yes, it does work, but you have to use the "Editor" and not the "Quick Reply".

 
  • mrsb04
07 May 2024 08:17
Replied by mrsb04 on topic Question for Jeff
Hi Jeff
How does one hyperlink a website address on this new system?

Thank you mrs b
  • mrsb04
07 May 2024 08:13 - 07 May 2024 08:44
  • RR01
06 May 2024 19:17
Replied by RR01 on topic Promacta treatment
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 ?

 
  • HP
06 May 2024 14:02
Replied by HP on topic Long flight with ITP

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. 
  • HP
06 May 2024 14:00
Replied by HP on topic Long flight with ITP

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.
  • HP
06 May 2024 13:56 - 06 May 2024 14:03
Replied by HP on topic Long flight with ITP
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  • MelA
05 May 2024 00:08
Replied by MelA on topic Long flight with ITP
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!
  • mrsb04
04 May 2024 14:55
Replied by mrsb04 on topic Long flight with ITP
That really is up to his doctors I think.
  • CindyL
03 May 2024 09:53
Replied by CindyL on topic Question for Jeff
Thank you for looking into it, Jeff! 
  • mrsb04
03 May 2024 01:42 - 03 May 2024 01:42
Replied by mrsb04 on topic Question for 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 .
  • HP
02 May 2024 11:00
Long flight with ITP was created by HP
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
02 May 2024 10:43
Replied by Jeff on topic Question for Jeff

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
 

Cindy, that is just sample Latin text. It doesn't pertain to anything and isn't anything important.
  • Jeff
02 May 2024 10:40
Replied by Jeff on topic Question for Jeff
I asked my programmer to remove the "Go to Editor" button, since it is not working.
  • Jeff
02 May 2024 10:27
Replied by Jeff on topic Question for Jeff
I think I fixed the PRIVATE MESSAGES component. To access it I went to my profile picture >selected the arrow to expand the menu >selected Private Messages >then selected the Messages tab.

Is there another way you get to your Private Messages? If so, I may need to fix that too.
  • MelA
02 May 2024 00:30
Replied by MelA on topic Question for Jeff
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 ;)
  • MelA
30 Apr 2024 13:02
Replied by MelA on topic Promacta treatment
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?
  • mrsb04
30 Apr 2024 12:52
Replied by mrsb04 on topic Promacta treatment
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.
  • RR01
29 Apr 2024 17:56
Replied by RR01 on topic Promacta treatment
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
29 Apr 2024 17:33
Replied by RR01 on topic Promacta treatment
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.
  • miluz2017
29 Apr 2024 09:19
Replied by miluz2017 on topic Handling of Promacta
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.
  • mrsb04
29 Apr 2024 04:48 - 29 Apr 2024 05:21
Replied by mrsb04 on topic Question for Jeff
Jeff
I cannot access my messages at all. I get a 404 message 
 
  • mrsb04
29 Apr 2024 04:42
Replied by mrsb04 on topic Handling of Promacta
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.
  • mrsb04
29 Apr 2024 04:35
Replied by mrsb04 on topic Promacta treatment
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 .
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