I’ve had ITP for 12 years and it has been controlled well by short courses of steroids which were giving me one to two years of remission. Recently following a bout of Covid, the steroids have not been working as well and I was persuaded to try Avatrombopag. After 5 months of trying and many infections it has become clear it is not working. I have generally just not felt well and struggled with joint pain all the time I have been on Avatrombopag and steroids or another immunosuppressant aren’t good options because of the constant low level infections. My haematologist is keen for me to try Romiplostin but I’m very reluctant as I’ve had such a bad time with the “gentler” Avatrombopag.
My count has been in single figures for a month and I’m getting some low level bleeding in the mouth and bruising. I don’t get any symptoms when my count is over 10. The other suggestion is that we do nothing at all and I live with a low count and low level bruising. Has anyone been in a similar situation? How do you cope with the worry of a bleed? Has doing nothing caused hospitalisation due to a major bleed?
Thanks in advance
Janet
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janran
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Hi have you looked at pdsa.org for options? Romiplostin has a lower 'effective' point than promacta or avatrombopag...ie it will be more effective generally if your thrombopiotin level is at lower levels. I'm curious if your dr said constant infections are related to the medication. I understand your apprehension. I personally have not lived with low counts for an extended periods yet! but do see people on the forums who do this. Some who've had zero counts.
He thinks the infections are caused by the steroids. I’ve was taking steroids alongside the Avatrombopag because the count was really high or low and I tried to stick with it and give a good chance to work. Of course this made it impossible to know what was lifting the count and the constant utis and antibiotics were affecting the count too. I came off the steroids about 6 weeks ago with no improvement to the utis. I was started on steroids again on Friday due to count of 1 and bleeding in my mouth.
Unfortunately I read on line that Romiplostin can cause utis and I’m bound to wonder if Avatrombopag could do the same. That’s not making me keen to take it either. Dr absolutely sure that it’s the steroids. Had the first clear urine sample for nearly six months on Friday a week after stopping the Avatrombopag. I guess it will be interesting to see if the steroids do start it up again? I’m seeing a different Doctor next week so will be able to get another opinion.
Hi Janet - I have had ITP for 10 years now and have tried several treatments which held my platelets around 50/60 - I am now off all treatment and they are still holding at around 40 and so long as they don’t go below 30 my consultant is happy. I too started to experience very sore pain and swelling in my hand wrist and fingers whilst I was on Fostamatinib - I then came off it and was put on Romiplostin and intermittently I still experienced the same pain but the rheumatologist said it was connective tissue pain - since I have been off all medication I feel so much better - thankfully I have not had another flare up of pain since last August and hopefully this will continue - I do bruise a little but thankfully no bleeding
Thank you I would very happily live with a count of 10 or over because I don’t get any symptoms at that count apart from a bit of fatigue and small bruises. I’ve been hoping that my count would get to that level but it seems to be stuck in single figures. Just would like to know how bigger a risk I’m taking.
My daughter 18 was diagnosed with itp mid February and went to hospital with a number of 4. She didn't respond to steroids and took second line treatment Rituximab. Her last Rituximab dose was on 26th of March. She didn't seem to respond to that either. Her numbers were for 1.5 month around 7-11. She had no bleeding or petechiae, only some small bruises. We are now 2.5 months with no treatment and her numbers have gone up from 11 to 17 and last week to 27. If she stays around 30, we have discussed with her doctor that they might leave her with no treatment to avoid side effects of medications. The only worrying thing is that her periods are very heavy and last longer than normal. I have read in this group that there a re people with single digit numbers who are having a normal life . Of course you need to be cautious and avoid some things like contact sports, getting cut with a knife etc. Wish you well x
Thank you for your reply. It must be so much harder and limiting to your lifestyle when you’re young. I’ve got to the stage in life where I don’t want to do sports and didn’t develop ITP until after the menopause. I hope your daughter manages to find something to help her.
I’ve had ITP for 15 years. For the first 4 years it was just monitored with regular blood tests and my levels stayed stable at around 50. In 2013 my count dropped suddenly to below 30 so I was started on treatment. First off was steroids which did nothing to my count, then Romiplostim, followed by Rituximab, both of which raised my count but only for a short while. It was decided to try NPlate injections which worked well, keeping my count at around 60. Finally in 2017 I asked to come off the injections as I was going on holiday to America and couldn’t be sure I could keep the injection packs in a fridge - I was self injecting at this time - so I tried Eltrombopag tablets 25mg daily. Since then, apart from a few blips due to illness, my count has been stable at over 100. In fact the latest count was 205! Is there any possibility of you trying Eltrombopag? I know this drug doesn’t work for everyone, but at least it’s another possibility for you to try. Good luck!
Both Nplate/Romiplostim injections or Eltrombopag are probably the treatment that I will try if I decide to do that. Avatrombopag is supposed to be the best tolerated of the TPOs and I really struggled with it. Also the fact that it really didn’t work doesn’t fill me with great optimism. I haven’t ruled anything out but was hoping to hear from someone with a really low count without treatment about their experience. That’s really good news about your count 😊 long may it continue.
Hi Janet. I think everyone responds so differently to the medication options that beyond trial and error I can’t advise. I had a very low count and depressingly halting platelet rate of improvement in the first months with ITP. I was on steroids then put on to Eltrombopag. I have generally felt well on it with a count hovering near the normal baseline for some months now. I’d asked about Avatrombopag but decided, despite the advantage of not having to time my meals, that I would stick with eltrombopag. Have you tried it? I hope you find a solution soon Janet. Good luck
Thank you for your reply. I’m glad that your count is good at the moment and thank you for telling me about your experience with Eltrombopag. That is an option if I decide to go for more treatment. It’s the trial and error bit that I’m finding hard at the moment.
I was interested in what you said about timing your meals whilst on Eltrombopag. I was never told how to take it, but after reading the leaflet I decided to take it at bedtime rather than any time earlier. As we eat our evening meal between 5 and 6 and go to bed some time after 11 I find I can cope without having to time my meals. I have managed taking it this way for over 7 years now so must be doing something right! 😊
Well done👏 I eat my evening meal a little later 7/7.30 which I often like to round off with a cup of tea - with milk! I’m a night owl so I don’t mind that I have to wait till after midnight to take the darned tablet!
γεια σου από Ελλαδα παίρνω Romiplostin έξι χρόνια και είναι μια χαρά, είχα πάθει εγκεφαλική αιμοραγία πριν και το ξεκίνησα, άργησε να δράσει αλλά δεν έχω καμμία παρενέργεια
My 23 year old daughter has had ITP for over 8 years. Her platelets have been below 10 for most of this time. She went through high school and college and only had to use prednisone when she needed surgery (for non related things). Other than that, she always has bruises and gets heavy periods (she takes tranexamic acid to stop them). She's a patient at Stanford Children's Hospital and they're fine just watching her live a normal life rather than keep trying different types of medicine. She gets checked every 6 months but that's just to monitor it.
I’ve had ITP for 4 years, my counts were 2, My haematologist start with steroids, that worked for few days and my counts was again dropped to single count. Then they tried immunosuppressants but I only got side effects without any improvements on my counts.
Then they recommended removal of spleen, which I rejected, since then I am normally less then 10. I get mouth bleed very often, so I switch brush with tooth powder, which improved my gums over several months, now I am able to use a soft brush. And I try to avoid getting bruising but sometimes we can not do anything for it, so I just ignore it
Recently someone told me to use Papaya leaf extract, After a week of using it, I checked my count and it was on 38, now I am taking it for over a month, I will do a retest soon to verify my counts are staying up
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Newly diagnosed with ITP low platelet 
ITP since May this year. Currently on Revolade
