Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Fosamax

More
4 years 6 months ago - 4 years 6 months ago #68211 by acosta02151
Fosamax was created by acosta02151
The PDSA website lists biphosphates (Fosamax) as contributing to low platelets, yet I cannot find any scholarly research confirming this. Can anybody help with this?

Please Log in or Create an account to join the conversation.

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
4 years 6 months ago #68228 by Hal9000
Replied by Hal9000 on topic Fosamax
In reading the relevant PDSA web page, there doesn't appear to be any studies. Rather, Fosamax is on the list of drugs that patients report as causing 'drug induced thrombocytopenia' aka DITP.
www.pdsa.org/about-itp/warnings.html

I think it is more like this. If a researcher has a theory on some mechanism about why Fosamax causes patients to report low platelets, then he would write a paper/study explaining his theory and supply evidence to substantiate and convince others of his theory. It is up to the reader to accept or reject the theory. A DITP drug is a fact. A study presents a theory about facts.

FYI, the order of names on a paper is important. The primary author is listed first. The person that contributed least, is listed last. Those that aren't first may not agree with all the assertions presented in a paper.
The following user(s) said Thank You: acosta02151

Please Log in or Create an account to join the conversation.

More
1 month 4 weeks ago #73570 by kclifton
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
The following user(s) said Thank You: midwest6708

Please Log in or Create an account to join the conversation.

More
1 month 3 weeks ago #73571 by MelA
Replied by MelA on topic Fosamax
Ken - your platelets been going down for 6 years - what have you done for them? What was your latest count, was that with treatment or no treatment?

I would never ever want to take Prolia - know a non-IPer who did and with serious outcomes. The infusion zoledronic acid I wouldn't want to take either. I have been on the generic fosamax for a few years now, almost time to give it a rest, and have not had 1 problem with it or my platelets!! I will take it over getting very serious results from osteoporosis - knew someone who wasn't diagnosed fast enough to avoid complications (probably because he was a male - afterall males aren't supposed to have that problem) and he ended up with his rib cage rubbing against his hip bones.

Good luck to you!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

More
1 month 3 weeks ago #73572 by kclifton
Replied by kclifton on topic Fosamax
Hello MeIA,
Thanks for responding. I was switched to Prolia because it was mandated by my insurance's pharmacy benefit manager (PBM). I wish they would just outlaw PBMs. I think it is a very, very bad idea for the PBM to drive decisions that should be made by a doctor. Anyway, the reason for the therapy was a T-Score of -2.9 on hip bones.

Regardless, looking back initiation of Prolia is when my platelets started declining. Of course hindsight is 20-20. Since I save all my blood work results I finally had the idea to graph them when they first went below 100k last September. As many have posted here doctors don't do much except watch until platelets get really low.

After the graphing last September I demanded to be switched from Prolia to something else, and as noted in my first post, I ended up on Alendronate (generic fosamax). The doctors and my hematologist at the time wanted me to do the Reclast infusion, but I said "no." All the NIH articles I had found showed better results from stopping Prolia with 1 year of oral fosamax. Of course the Reclast is zoledronic acid, which has some bad outcomes too as I stumbled on to this month (NIH articles in my first post).

Around February of this year I stopped all prescription drugs and otc drugs except the alendronate. No improvement after 30 days, still declining. Finally, four weeks ago I stopped the fosamax after finding the NIH article from JPSM. This week's blood work is the first increase in platelets this year -- a jump to 87K. I am not going to get too excited, since the bone marrow biopsy is the end of this month, but with losing 10k per month all year I will celebrate any increase, even if temporary. I had a feeling there might be an improvement since last Monday was the best I have felt all year -- 4 weeks after stopping fosamax. The fosamax stays in your system and bones for a long time according to the literature I have read -- I thought that any positive change in platelets would be about 3 months after stopping it.

Regarding the osteoporosis, I decided I would rather be alive and feeling better than to have someone looking in my coffin remarking about what great bone structure... I may try the Salmon Calcitonin prescription nasal spray if platelets stabilize.

Kind Regards,
Ken in Salisbury, NC USA

Please Log in or Create an account to join the conversation.