Avatrombopag or should I try living with a low count? Does anybody have experience of either please?

[janran]

Hi everyone

I am a woman in her early 60s. I was diagnosed with ITP 12 years ago and have had no active bleeding symptoms during this time. I only bruise and get oral blood blisters when my count is very low (usually under 10). Steroids have been working well for me and usually a short course of a low dose will maintain my count for over 12 months. This year I have had a run of viral infections and COVID and have needed to take more steroids for a longer period. As the steroids seem to be less effective my haematologist is recommending I try Avatrombopag.

I’m worried about the possible side effects of trying an newish drug and would always prefer to use the minimum amount of treatment possible. The steroids do give me some unpleasant side effects but, at low doses, they’re manageable. I really don’t want to end up in a situation where the treatment is worse than the disease and I will probably need to take Avatrombopag continuously.

I have discussed with my haematologist the idea of having no treatment at all and living with a low count. Without the yearly steroid boost, I think my count will be very low (possibly in single digits). I don’t take part in any sports or any risky activities so that will help me to avoid injury.

Just hoping for some advice from anyone who has tried Avatrombopag or anyone who is not an active bleeder and is living with a very low count without any treatment.

Thanks in advance

Janet

[RachelP03]

Hello, I’m afraid I can’t input on your question as my daughter hasn’t gone down that route for her ITP yet but like you we are debating it! Your post drew my eye as you mentioned mouth ulcers (my daughter has 3 currently but not of the blood blister kind, normal illness type) which she regularly gets but also we have been told she can try steroids. Our recommended dose was based on weight and we were told something like 40 for 4 days. You mentioned a low dose helps you, how much is that and how long for do you take it? Many thanks!

[janran in reply to RachelP03]

Hi Rachel

My platelets used to respond really well to a low dose of steroids. But we found that out by chance when they gave me a low dose before trying another treatment. Within a week of taking 10mg my count was over 100. I would normally take 10mg for two weeks then taper off over two or three weeks. This would keep my count above 50 for a year to eighteen months. Before that I did have a couple of courses of steroids at 40mg as this is the more typical dose. I struggled a bit with the side effects at the higher dose but it raised the count really well. I hope you manage to find a treatment that works well for your daughter.

[LifeafterITP]

I had bruising and mouth blisters when my count was under about 15. Steroids did not work for me so I was offered Eltrombopag and that has kept my platelet count at a very safe level for the last 9 years. I am fortunate that I have no side effects and live a completely normal active life. Avatrombopag is a similar drug, like all drugs it will come with a big list of possible side effects. You will only know by trialing it if any of them affect you. By not taking it you may be missing out on a treatment that keeps you safe from a dangerous bleed in the event of a simple accident.

I don’t like taking any medication long term but it keeps me safe, healthy , active and worry free.

[Bowiemolly in reply to LifeafterITP]

Started Avatrombopag in November after having serious side effects from N/Plate injections. Started with some side effects from the drug but much more manageable. Really bad on Steroids, turn into a Zombie. Would recommend giving Avatrombopag a go, much gentler on your body is what they have told me. Last blood test platelets 89 due in 5th January for next check. They want platelets between 50 to 150 while on this drug. Elaine.

[janran in reply to Bowiemolly]

Hi Elaine

Thank you for your reply. I started Avatrombopag four weeks ago. The count has been all over the place and I’ve not felt great on it, especially in the first two weeks. The consultants are not phased by the huge fluctuations and feel it will settle down to a regular level soon. Fingers crossed that they will be right. I need to stick with it now that I’ve come this far. Did the Avatrombopag make you feel weak, off balance and wobbly?

Kind regards

Janet

[Bowiemolly in reply to janran]

No some joint pain,comes and goes, loose stools but only go once or twice a day. Slight hair loss. Generally I am ok ! This is easy compared to N/ Plate.

[Bowiemolly in reply to Bowiemolly]

I have been admitted twice last year. With platelets at 1 or 2 with the side effects that goes with that count. 2023 was awful year for me. Swelling of left leg and arm, ultra sound scan on leg. Cat scan on brain. Have always been very fit and healthy, only medication I am on is for ITP. Now can’t do hardly anything, try to keep up with Yoga but often don’t feel strong enough, walk a lot but not as far as I used to ! Can’t work ! Hoping 2024 is a better one for me !

[rjsmyth]

I would try the drug offered. Steroids are horrible long term but they are very cheap so are always used first to suppress your immune system. The drug you have been offered is wholly different approach to the problem of ITP. I have been on NPlate for 12 years and lead a normal life other than having to inject myself weekly and 12 week blood tests I do not give my ITP much thought. Good luck

[Clarry1234]

Hi, I've been on Avatrombopag 18 months now, no side effects and it's enabled me to get back to my life. Up until 3 months ago I was still having blood tests every 2 weeks as my counts were still fluctuating (I’m somewhere between 2 recommended doses) but I think I might have found the right one now as I’m having blood tests every 8 weeks. Eltrombopag did nothing for me, steriods worked but at too high a dose to keep me on and Romiplostim was working for a while but they kept having to increase the dose. I was living in Southern Ireland up until September 2022 and then moved to Scotland for college. I checked I could still get the medication there before moving. I'm very thankful for this new medication. I currently take 20mg avatrombopag 5 days a week and my platelets have been hovering around 100. By all accounts, although it’s a new drug and I understand your apprehension it does seem to be a game changer for ITP patients and I would definitely recommend it over continuous steroid treatment. Good luck. Clarissa

[janran in reply to Clarry1234]

Thank you for your reply Clarissa. It’s good to hear from someone who’s having good results with Avatrombopag. I’ve got a face to face appointment at hospital later this week so will be able to ask a few more questions and make some sort of decision then.

[Bowiemolly]

Hi I have recently started Avatrombopag and so all good, weaning of steroids now down to 5mg as I have Bad side effects from them. Was on N / Plate injections but started to react badly to them, joint and muscle pain, swelling of legs and arms. My haematologist is this is alot gentler on your system and tolerated better. I have high hopes for it working for me after 10 months of admissions, steroids and alot of pain. Give it a try they say keeps your platelets at a steady number. Good luck !

[Kerryc]

Hi, I started Eltrombopag about 2 years ago, definitely made a difference to my platelets and sense of well being, not always finding bruises and wondering how I got them. I felt normal again.

Not quite the same medication but worth a try.

[Bertie_Potter]

I'm on Avatrombopag and don't have any side effects as far as I know.

[JigSaw63]

Hi janran, I'm currently on both Avatrombopag and Fostimatinib - Avatrombopag did not work for me on its own. These 2 drugs together give me a much better platelet count but it's not brilliant. I don't get any side effects with either drug, thank goodness. I would give Avatrombopag a try as steroids alone are really bad for the body long term and whilst no one knows what these new drugs are like long term, I still think everything is worth a go. I would not want to risk going drug free because the possible effects of internal bleeding anywhere in your body is not worth thinking about, let alone the chance of injuring yourself in any way!

[janran]

Thank you JigSaw63

Thank you for your reply. I had an appointment with my haematologist this week and he’s really not happy for me to go without treatment. My count was 15 and has been slowly dropping. The steroids aren’t working as well as they used to so I am going to try the Avatrombopag. Fingers crossed for good results.

[holcotts]

Hello janranIt sounds a goid decision.

I am similar age snd ITP stage Steroids carry osteoporosis risk for women of our age. Sterouds liwer immune system hence orone to infection.

I too wanting to stay off the 'big drugs' until covid when consultant nudged ne harder because of steroids lowering immune system .

I have been taking n plate for nearly 2.5 years....

No side effects. Platelets sit above 40 I have got very used to injecting.

Well done for taking a move forward from steroids. Good luck!

Jen

[janran in reply to holcotts]

Thank you Jen. Just fear of the unknown was putting me off really and as you say the steroids come with their own side effects anyway. I know that I will struggle with the higher dose of steroids and the low doses aren’t working anymore. Hopefully this will work and turn out to be better all round.