Gerlinde
Average lifespan of platelets in ITP is generally less than 5 days as opposed to 7-10 days in none ITPers.  
Newer platelets are larger and more sticky than mature ones thus risk of thrombosis is increased. This is why treatments are supposed to be at the lowest dose possible to keep counts above 50. 
My haematologist told me at diagnosis (9 years ago) that should  I need surgery with a count above 50 I would require subcutaneous Heparin injections whilst activity was reduced. 

Count now 131 so Avatrombopag is working but  finding the appropriate dose is proving difficult 

Wow, mrsb, talk about a yo-yo count!  Hopefully they can find the right dosage for you soon.

Hi RinJin,
My case is a little similar to yours although my platelets are falling slower. I was around 120K at 20, and now my counts are around 40K at 38 (so about a 4K decrease per year). 
Do you have bleeding symptoms or not ? If you don’t, a 48K count is usually not a problem and doctors probably won’t want to treat you for now. 
The important thing is to have a competent doctor following your case. 
In my case, when my counts dropped too low during pregnancies, they tried prednisone and IVIG and my count didn’t go up. Combined with a few other factors, they thought in might be genetic and I’m now waiting for some genetic test results. Preliminary findings seem to indicate it really is a genetic disorder. 
ITP is a diagnosis of exclusion, if you’re having doubts, you should discuss them with your doctor(s). 
Could you provide a few more details about your condition? I’ve been trying to find other people with steadily dropping platelet counts but I haven’t had much luck. Have your platelet counts always been under 150K? Do other people in your family have low platelets, or bleeding symptoms? 

Hello,
I think the 'standard' for major surgery is 100k. My orthopedic surgeon wants 100k. Yes, there will be blood thinners for a month. I don't know the name yet, but whatever it will be, it has to be at the lowest dose, says my hematologist. I don't quite understand why with ITP the platelet life span is less than 5 days.

As I said - my former hematologist said a count of 50,000 for platelets would be good for brain surgery.
I don't even know what my count was for each knee replacement, my surgeon was quite knowledgeable about ITP and aware I had it.   
But you need to have or be near the count the surgeon says he/she wants.  

What is your count now wildhag?

Has anyone had a positive increase in platelets from having the Tamiflu series of drugs when you’ve gotten the flu type a?   My platelets were down to 70,000 and I got the flu and took the Tamiflu medication for seven days or whatever it was and my platelets jumped up to 400,000 and they’re still just gradually coming down; I’m at 200 now about three months later. Interesting …..makes me wonder what’s in the Tamiflu and if any research has been done.

I want to take elderberry for my platelet count to go up, but if I do, will it adversely affect my RA??

I would go with what my RA doctor advises!!

I know ITPers shouldn't take echinacea.

www.mountsinai.org/health-library/herb/elderberry
"If you have an autoimmune disease, such as rheumatoid arthritis or lupus, ask your doctor before taking elderberry, as it may stimulate the immune system."

Oseltamivir was well tolerated with a good overall response rate and was useful for treating chronic ITP. We observed an initial increase in the number of platelets; however, this response was not maintained. 
Apr 26, 2022
National Institutes of Health (.gov) pubmed.ncbi.nlm.nih.gov  › ...

Cindy how are things going with getting on here??

Recently, I've come across discussions on Oxalate poisoning from foods, such as Spinach, Rhubarb, Swiss Chard, and a host of other seemingly healthy vegetables. My onset of ITP did come around a time coincidently when I also ate raw spinach daily. I don't know if this was the exact cause but as I'm learning now, oxalates are plant toxins that can accumulate in your bones and bone marrow, where blood is produced, including platelets, and can interfere with their production. They are difficult to eliminate from the body. I read above that while pregnant you were consuming green smoothies daily. Wondering if oxalate poisoning from the daily spinach and kale was a potential factor in your platelets being consistently low, despite you adjusting your diet several times? 

Mel, so far, so good!  I think it's been a month since I've had this issue.  So we shall see what happens in the next little while!

YES !!

Anyone have experience with cyclophosphamide (cytoxan)?

Count is 64....Avatrombopag 20mg 3 times a week, Pred 2mg a day.
Promoted to fortnightly bloods. 

That is great news!  So happy for you mrsb!

Fantastic news mrsb!!   

Back in January I went to the hospital for pain in my ear and neck. Was sent home on antibiotics. The following week went back and had a ct done and was admitted for a week heparin drip, removed my port and three antibiotics. I went on the day before my birthday and had to go to infusion daily for iv antibiotics 

Hi All,

I have been doing my own research because of the severity of my ITP case. Just a reference I have previously been on Steroids, IVIG, Rituxan, NPlate, Promacta, and now back to NPlate. Rituxan gave me a year of remission the first year and about 6-8 months the second time. I also have a very small therapeutic window according to my doctors with NPlate I have to get shots every three weeks because I overly respond or under-respond. My last injection was at 12, and my numbers every three days after that were 12 (again), 12, and then 501. The shot dose is 2mc and when we have reduced it, I go down to single digits. This has been the cycle for at least three months or so and it is really starting to concern me, be of the effects of the roller coaster.  Because of my response to treatment, the doctors have told me I have refractory ITP and called me brittle with a small therapeutic window while sharing with me that I am one of the most complicated patients they have ever treated. I know you all can relate to these complications of ITP so I'm not trying to be extra special, but I am trying to find some kind of treatment that may work for me. Today I came across this study and it showed a great response, so I thought I would check and see if anyone has done these together as a combined treatment. I have attached a copy of the link and the outcome data just for easy reference, but I am also curious if anyone has just had cyclophosphamide and I am curious how that went.

Feel Free to share your thoughts.
- Nick

Here is the link to the study:  www.ncbi.nlm.nih.gov/pmc/articles/PMC6395969/
Here is a clip of the outcomes:
GroupsCompletely effectivePartially effectiveMinimal effectiveIneffectiveTotal effective rateaP<0.05, compared with rituximab groupbP<0.05, compared with cyclophosphamide group.

Sounds dreadful. I hope you are feeling better now 

 Nick,

A small number of patients only in the study but interesting all the same.
Have you read this?  link.springer.com/article/10.1007/s00277-022-04786-y#Sec5   
If you cannot access it I have a pdf copy I could e mail if you wanted. 

As a retired renal  nurse I would err on the side of caution and if you do choose cyclophosphamide please ensure you have your kidney function checked prior to treatment then, assuming it is ok, monthly thereafter. Over the years I nursed several patients who developed a degree of kidney failure as a result of taking it, some of whom ended up on dialysis. It also has many more horrendous side effects. 

I too am refractory to many  treatments (Azathioprine, MMF, Romiplostim, Eltrombopag, Fostamatinib, Rilzabrutinib, IVIg).  
High dose steroids  work but obviously that  is not a long term answer.

Admittedly I have yet to try Rituximab. When I was diagnosed 9 years ago I had 2 young grand kids (i.e. germ factories) I would have had  to stay away from.   I could not do so as I provided child care for their working parents.  They are older now so I may well have to try it sometime.

I notice you haven't mentioned Avatrombopag (Doptelet). It might be worth a try. I have  been taking it since March this year with no noticeable side effects.  It has taken a while to sort the dose out but am now on 20mg 3 times a week,  my last platelet count was 64. 
 
Good luck with whatever you choose and please update us as and when.

Always appreciate your opinions & expertise mrsb!

I think we all need to realize that covid is not gone either - 4 friends just got it, believe a booster which will include the newest covid variant comes out next month.  

Nick I've only had prednisone and WinRho as treatment so I can't help you - but as mrsb said:  Good luck and keep us updated!

Thank you for the article and I am going to submit both of them to my provider. He honestly has probably read them but hey, why not make sure?  

As far as Doptelet, I have not tried it but I think that was the next option after this next round of Rituxan. I think both my doctors are still not sure about it and so they want to give it more time before just prescribing it to me. Also, I can't remember and I can look it up, but is Doptelet another platelet stimulant? I don't have an issue with the production of platelets, it's the destruction I have an issue with so I know that is also a reason I haven't taken or been on certain medications. 

Anyway, I see the doctor on Tuesday, so I will for sure be sharing what I find out.

Are your numbers holding? Or are you having fluctuations? I was told, for me, the goal is to stay between 30 and 100 weekly, but as I shared I am bouncing consistently from 12, 28, 5, to 400, 500, 600, and even at one point up to1600 (this was after my first initial shot at a much higher dose) however since then, and the dose reduction, I have received the same dose every time. They are starting to get really concerned though about me clotting because of the spikes. 

Thank you again for the information, Talk Soon!

Hello everyone, I was wondering about bleeding symptoms in relation to platelet counts. When I was younger I hovered around 80G and I had menorrhagia, even though it’s not a particularly low count (it’s under control now, thanks to an hormonal IUD–I was resistant for years, but I have to admit it’s life-changing). Nowadays my count is between 30-50G, and I often have very dark bruises (almost solid black) and scattered petechiae on my legs. 
Would you say that is typical? What’s your experience with bleeding symptoms wrt platelet counts? 

Sorry no one has been able to respond to you AnnaM.   I've had ITP for many years and have found all of us are different in symptoms.   I am not sure what a count of 30-50G means.   When I was diagnosed I looked like I'd been beaten with at 2x4 there were so many bruises on my body along with petechiae - when my count went way down after a tetanus booster I had no symptoms at all - when I was put on a baby aspirin a day to prevent blood clots after knee replacement my count went up in the normal range.   I do have many very dark red/brown bruises on my arms from bumping them - usually they don't bleed unless the skin rips open.  

I think I'd say there is nothing typical about ITP.

It just started again this morning!  I can log in, but can't see my profile and can't stay logged in!  But I've been expecting this!

Thank you for replying MeIA! 
That is the conclusion I’m coming to: that every patient with itp is unique… what makes it frustrating for me is that I’d like to know if my symptoms and lab results are weird because I have atypical itp or because i don’t have itp at all. I know I'm not likely to find a definitive answer in a forum, but the scientific literature is frustrating. I feel like every time I try to dig for information, scientific papers fall short: “we don’t have enough data on pregnant itp patients” “we haven’t tested this on enough patients” “here is this algorithm because we don’t have the tests to determine who has itp” etc. etc. 
I even had the opportunity to see a professor who specialise in rare genetic platelet disorders and at first she said she thought I did have itp, but now she’s saying it might be genetic after all? It all seems very murky to me. 
I know it’s nobody’s fault, it’s simply where the science is as of today, but I can’t help trying to find if some people have a disease that looks like mine. 
(PS: 40G simply means 40,000, or 40 as we’d say as patients. 40G is just the way it’s written on my labs. Maybe it’s a french thing?)
But thanks again for confirming that bleeding symptoms don’t really correlate with platelet counts for you either!

Happening to me too now  Cindy am told I am logged in on this page, but if I go to the recent topics tab it will show me as logged out and does not show I have posted this message. 

Hmm, that's weird, mrsb. Can you see your profile? Sometimes I can and other times I can't.  I can today.
I'll have to log in for a few days, then suddenly, I'll bring up the page and I will already be logged in.  I don't understand it at all.  I think it'll go for a couple of months before it happens again, once I get back to normal.