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.

"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!!  

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.

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

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!

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

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.

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

_____________________________________________________________________________________________________________________________________________________

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

_____________________________________________________________________________________________________________________________________________________

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.
 

I started Octagam (again) back in December 2023 and since then have experienced bouts of diplacusis, which is a variance of pitch (and sometimes echoing) in the ears. I know this is a long shot but has anybody else experienced this as a result of IVIG treatment?

Never heard of Octagam - I'm assuming it is a brand of IVIg? Was this your 1st line of treatment? What is your count doing?
I've never heard of anyone saying IVIg caused a hearing problem. We feel my ITP was triggered by a gamma globulin injection
that was required by my husband's company before we could move to Tokyo.

Keep us posted as to what you find out! Good luck!

I've had IVIg twice..a complete waste of both donation and  money as did nothing either time... I was consented both times after  long discussions  re side effects, diplacusis was not mentioned either time. Have checked the UK emc and it isn't mentioned there either

Hello everyone 
My 6 year old son is newly diagnosed with ITP (15/5/2024). He had many bruises and petechia all over his body. He has been suffering with nasal bleeding the past 10 months. Pediatrician think it’s acute ITP and we are doing watch and wait. 
When he was diagnosed his count was 15. A week later it was 51 (spontaneously/no treatment received). All his bruises and petechia disappeared within a week. 
We have an other appointment on Wednesday and here he will have a new blood draw. 

But…yesterday he got one new bruise on his leg and today he has one single blood blister in his mouth (wet purpura) - never had this before.
Im worried that his count is getting low again.

Has anyone experienced a spontaneous raise in platelets and sudden fall afterwards? 
 

Par for the course with ITP I'm afraid, counts can fluctuate

Is it possible that a very low count only causes a single small wet purpura in oral mucosa - but no petechia at all on the body and only a single small (1 cm ) bruise on one leg??
I’m really afraid of what tomorrow is hiding, when he will have blood work done

All of us are different. I only ever get one or two wet purpura blisters orally and never with a count in double figures.
As for Petechia, I have had ITP for 10 years and never had it despite  many  counts  in single figures.  I can be covered in bruises even with a count above 30. 

Thanks for replying. His count is 46 today (51 last week).

My platelet count from Feb 23 to May 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174
17 May 24 - 171

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

mrsb04 wrote:

The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80
 

The problem is that if we go one step further and reduce the dose of cyclosporin A to less than 100 mg daily, then my platelet is likely to crash again, that's my experience.

So glad for this thread - exactly what I joined to look for. My ITP has been in remission since 2012 (just two dips when I was sick in 2013 and in the ICU with an infection in 2016). Platelets stay well above normal. But I have had superficial clots in my legs (2013 and 2018) and just discovered a DVT in my leg a few weeks ago. Am on Eliquis and have a follow up with my hematologist in a few weeks but am curious whether she will check for any conditions that increase your risk for clots. Just so strange to worry about not clotting for 14 years to suddenly have to worry about clots. Glad to know I am not the only one!

diagnosed 7 years ago,  treated with steroids 4 times, 8 rounds of retux,  counts ranging from 125 to a low of 7…. nothing worked for me,  started promacta 60 days ago, counts now 350-400.  zero side effects,  

been quite a journey with minor bleeding, exhausted all the time, last 2 rituxan treatments encountered a major allergic reaction including trip to the emergency ward straight from the infusion center…. after 6 successful rounds.  i’ve had 3 marrow biopsies, all negative.

recently discovered i have kidney liaisons… probably cancer… 7 in total, docs won’t biopsy them to avoid spreading cancer.

my advice to anyone facing these tough decisions….  Go to mayo clinic,  they deal with this tough stuff every day.

gods speed and live your life like today’s your last chance,  tell your family you love them

Hi! My husband was diagnosed with ITP 3 years ago. It's been the usual roller-coaster ride, but with the help of a fine hematologist, he's doing all right-- BUT for the last few months, he's had an itchy rash that won't quit. It's pretty much everywhere, tho it moves around. Our hemo and derma MDs have consulted, and are baffled. They thought it might have been from the rituximab infusions 6 months ago, but have pretty much ruled that out. Skin biopsies are inconclusive. They think it's eczema/dermatitis-- but nothing helps, not even steroid shots, Dupixent, anti-itch creams, etc.

It's kind of a misery. We're wondering if anyone else has had this situation...? And we'll appreciate any suggestions about dealing with it!

We're happy to be part of this group. It's wonderful.
 

Hi! I have not heard of anyone having an itchy rash due to ITP. Could this be a type of contact dermatitis? Have you changed laundry detergents or fabric softener or laundry booster? I'm sure the dermatologist has already asked you that.

I hope you can find an answer and get that itchy rash gone, that must be miserable for your husband! Keep us posted!!

Just read an article on the National Library of Medicine in which you start out on IVIG then add Rituximab which is tapered off over a 6 mos. period ending with just a once a mos. regimen of IVIG.  Wondered if any body has tried this and what there success rate was.  I have tried about every thing with minimal success.  Either what I try works for a while and then fails or I have a bad reaction.  I tried Promacta and had a bad reaction.  Also tried Win Rho and ended up in the hospital twice.  N-Plate worked for the longest but than gradually petered out.
Any ideas.

I'd be interested to see the article can you post a link?
Have you tried Avatrombopag?

Here is the article www.ncbi.nlm.nih.gov/pmc/articles/PMC6058053/
Yes we tried Doptolet and followed the manufactures dosage regime.  The highest my platelets got were 32000

Hi, MelA-- and thank you for your response. We've changed pretty much all of our soaps, etc. and it hasn't made a difference. We appreciate your empathy, though-- it helps! Best, JandS

WTow I would be interested in what happened with WinRho that put you in the hospital twice!!   I had one IV of WinRho about 22 years ago after a tetanus booster sent my count to the gutter - that one IV brought my count to a decent level and basically a steady count (not in the normal range but a good count).  I had no problem with WinRho - it was given as a slow drip IV not a push.

Thank you in advance !  
 

The WinRho first caused me tot have the chills, then a fever of 102.2 and severe kidney pain (I have Polycsytic Kidney disease and am on dialysis) and weakness to the point that I could hardly walk. The dialysis center sent to the hospital. Not much was done other than observation.
About 3 weeks later I tried a weaker dose of Win Rho and I had negative results again including severe kidney pain that resulted in ruptured kidney cysts, hematuria and my HgB dropped to 6.6

Hi everyone 
my son was diagnosed with itp last month. He had a fever and cough few weeks before he was diagnosed. He also had nose bleeds 1-2 weeks before his diagnosis. His count was 15K. 

Today and just 1 month after diagnosis his count is 150K … he didn’t receive any treatment.

But the thing is that I’m almost sure that he also had itp several months ago. When he started having nasal bleeds (9 moths ago). The nasal bleeds always happened after flu symptoms. 

Has anyone tried something like this- I mean itp only when sick and spontaneous remission?

WTow  Thanks for the link. How long were you taking Avatrombopag for?