Search Results (Searched for: )

  • MelA
19 May 2024 14:40 - 20 May 2024 00:33
Replied by MelA on topic Rituxan vs Truxima (Rituximab)
What is a biosimilar medication? A biosimilar is a biologic medication. It is highly similar to a biologic medication already approved by FDA – the original biologic (also called the reference product). Biosimilars also have no clinically meaningful differences from the reference product.May 7, 2024

Biosimilars Basics for Patients - FDA

FDA (.gov)
www.fda.gov › drugs › biosimilars-basics-patients

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TRUXIMA is a type of biologic called a biosimilardifferences from existing FDA-approved biologic drugs. TRUXIMA is a biosimilar of the drug Rituxan® (rituximab), for the treatment of adults with GPA and MPA. Both TRUXIMA and Rituxan are given along with a type of steroid medicine called glucocorticoids. TRUXIMA® (rituximab-abbs) | GPA or MPA | See Safety Info
TRUXIMA
www.truxima.com  › gpa-mpa

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khakie4 the only sure thing about ITP is that there is no sure thing about ITP !
What is your count now?
Take care and keep us posted.
 
  • khakie4
17 May 2024 17:41 - 17 May 2024 17:42
Rituxan vs Truxima (Rituximab) was created by khakie4
I am wondering if anybody has had experience with Rituxan and the generic Truxima. I have had Rituxan (brand) 2x in the past 10 years. It seems to work for me and put me in remission for 5 years. Well, last year my platelets dropped and they did a round of the generic Rituxan (Truxima) and now my platelets have dropped again. I got the treatment 8 months ago and I am wondering if the reason I didn't react as well is because I got the generic last year instead of the brand name. My Dr says that they are "biosimilar" and basically the same medication and "the nature of my illness" may be causing me to not react the same. On top of that, insurance most likely will not cover the brand name even if I ask for it. I am frustrated because biosimilar does not mean the same. I am trying to figure out why I didn't react as well this last time. My Dr may be right but I am wondering if there is any validity to my thinking.
  • kclifton
17 May 2024 14:28
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
  • MelA
17 May 2024 00:44
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!
  • 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.
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