I am about to start Avatrombopag which is newly licenced in England, and am wondering if anyone has any experience of using it.
I was going to be put on Fostamatinib but wasn't sure about the side effects so have asked to try Avatrombopag as I am currently using Eltrombopag which has suited me but seems to have stopped being effective.
This is very interesting to me as I had been told avatrombopag was expensive so I think you are fortunate to be able to try it. I hope it works well for you. I am curious to know if anyone else has been on Eltrombopag for 3+ years with platelet levels fluctuating always below the golden ‘normal threshold ‘ of 150. Then for no apparent reason I passed this magic number and the following appointment it had soared to 344! I was assured this is safely within the normal range as i started to worry I’d be more in danger of clots than bleeds. I have consequently been changed from 50 mg/day eltrombopag to 50 on one day, 25 the next. I’m feeling ok but can’t wait to go and see what my platelets are doing! I’ll let you all know!
Hi, I've been on Eltrombopag for 7 years and up until last year it worked just fine, although we did adjust the dosage as and when. Last year it was just low platelet numbers with the odd rise now and again, hence why I am going to try something new.
I've been told that anything above 30 is safe but ideally 50 is really good. I've rarely been above 100 but have felt just fine.
We are all so different!!
Hi there, my son , soon an adult, was on eltrombopag for years but on a high dosage in the end. His doctor who is amazing fought hard for him to be on avatrombopag and it works a treat. With eltrombopag as you know there are diet restrictions whereas this has none of that. The best medicine for him that works.
Thanks for that positive reply. I really hope it works for me too. I'm looking forward to being able to eat what I want when I want!!😀
I read your post with interest and wonder what diet restrictions your son has experienced. I have been on Eltrombopag for 6 years, taking 25mg just before bedtime. In this way I can get round the listed restrictions regarding times before and after taking the drug.
Brilliant that eltrombopag works for you. It was just that it did not work as well as he had sports and had dinner afterwards and depending on what we had for dinner he would had to wait to take his tablets. He used to be woken up early to take eltrombopag before school and then have soya products for breakfast. But I’m thrilled it works for you. Everyone is different. 😊
I have been on Eltrombopag for 6 years now, at present taking 25mg daily. My count has been stable at above 100, apart from a blip a couple of years ago when I started taking a drug for another ailment which disagreed with Eltrombopag. This was due to a lack of communication between my consultants. After weighing up what was more important I stopped the other drug and stayed on Eltrombopag. However I’d be interested to hear how you go with the new drug, please post your results won’t you?
Hi Lynney, just to let you know that I started Avatrombopag this Monday, 1 tablet daily. I have another blood test tomorrow but my starting platelet count was 5! so I'm not expecting any great increase after just 5 days. No side effects so far though 😀
Hi, I have just started Avatrombopag, no side effects so far but on a low dose whilst tapering off steroids. Count seems OK, no symptoms, even through Covid this week so no test possible. Yes it is expensive. The count target is 50 and as I normally run at about 30 on steroids this would be nice.
Thanks for your response. I am hoping that I can start Avatrombopag next week (had to delay my clinic appointment this week because of doctors' strikes). I will have to taper off steriods also but really hope this medication will suit me too 😀 It's so good that these new drugs are starting to come through.
Hi Bertie, Avatrombopag seems to be working for me so far. Last Friday my platelet count was 3 and yesterday it was 28 so I'm feeling very positive and no side effects so far.😀
I have been on Eltrombopag for 7 1/2 years. My platelet count tends to jump about a bit but very slowly over the first 4 years it increased until it was consistently above 150. My dose was reduced from 50mg per day to 25mg. Now been on 25mg for 3 years, it dropped down to the 60 to 80 range when my dose was reduced but very slowly it’s increasing and now am consistently in the 90’s.
You're very lucky that Eltrombopag is still working for you. As I said, it suited me just fine until the past year when it was just so erratic. I am just starting a 3 day trial of Avatrombopag to see if I have any allergic reactions, blood test on Monday and then, hopefully, move forward from there 😀
Yes I've been on Avatrombopag nearly a year now, no side effects and it's enabled me to get back to my life. Up until last month I was still having blood tests every 3 weeks but I think I might have found the right dose now. 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 every day except for 2 days a week I take 40mg and my platelets have been hovering over 100 (at my request as one of my 'tells' - hot flashes, start when my platelets are below 100).
Hi Clarry, I understand Scotland had Avatrombopag long before England so I'm just grateful that it has now been licenced here. I have just started a 3 day trial to see if I have any allergic reactions, then a blood test on Monday and, hopefully, move forward from there. I was hoping to start a couple of week's ago but the hospital pharmacy had trouble getting the drug 😔
How’ve you got on with your trial of avatrombopag?
Hi Clarry, my platelet count was 5!! but I started Avatrombopag daily on Monday and I have another blood test tomorrow. It's still very early days. Plenty of bruising so I don't think it will have cut in yet 🤞 in a couple of weeks it will and no side effects yet😀
Hi Clarry Hi Clarry, just an update, last Friday my platelet count was 3 and yesterday it was 28 so all moving in the right direction and still no side effects so I'm feeling really positive😀
How’re you getting on with the Avatrombopag, are you still on it?
Hi Clarry1234, yes I am still on Avatrombopag but it is being combined with Fostimatinib as it didn't work on its own. The 2 drugs together give a better platelet count but I am still very up and down. I am really lucky that I don't have any side effects as Fostimatinib can have some very serious side effects. Hopefully it will stay that way 🤞
How are things with you?
Hi, Im glad they’re finding something that is working for you even if you’re not 100% stable. This ITP really is a roller coaster.
I’m still on Avatrombopag although on a lower dose than before as I’m very up and down too. I really think my general stress levels play a huge part. I’m at Uni (mature student) and leading up to my submissions (I’m studying photography) they had to up my dose but after I’d submitted everything, my platelets did a great leap so it was lowered. I was taking 2 a day 3x a week, 1,- 4x a week. Now I’m on 1,- 5x a week which makes me abit uneasy as the semester goes on. But I’m not complaining.
I'm on 200mg of Fostimatinib 7 days a week and 40mg Avatrombopag 5 days a week. It was upped from 40mg 3 days a week because I only had a platelet count of 30 at the end of 3 weeks. I've got a blood test on Friday this week so we'll see what platelet count I get after 3 weeks of the new dosage. It can be very draining but what are the options?
I'm now retired but have had ITP for 8 years and tried all sorts of medications. Eltrombopag worked well for 6 years then stopped, goodness knows why. So now I'm back on the merry-go-round of trying things and adjusting dosages 😔
I have been on Avatrombogag for 2.5 weeks. I was at 33 count before, took 20 mg daily for one week and went to 233. Cut back to three times a week and a week later I was at 464! Now trying twice a week to see if count comes down. If not, the next option is once a week. It seems to work very well for me. No side effects yet.
Interesting to hear how it has worked for you so far. I have just started a 3 day trial this week to see if I get an allergic reaction, so far so good. A blood test on Monday and hopefully move forward from there. I was hoping to start a couple of week's ago but the hospital pharmacy had trouble getting the drug 😔 Still, fingers crossed, it'll work for me too.
Very keen to hear what your blood test says jigsaw. Any side effects?
Hi holcotts, my platelet count was 5!! but I started Avatrombopag daily on Monday and I have another blood test tomorrow. It's still very early days. Plenty of bruising so I don't think it will have cut in yet 🤞 in a couple of weeks it will 😀
Hi Holcotts I've started Avatrombopag properly now and last Friday my count was 3 and yesterday it was 28 so all going in the right direction. No side effects so far. I'm feeling quite positive.
Here is an update on my experience. After getting too high a platelet count, I switched to two pills a week. The last three weekly readings were 189, 102, and 133. Doc says to stay on two per week and get a blood test in three to four weeks. I was a little fatigued early on in this treatment, but I am not sure if that is the drug, ITP or old age. All in all, I am quite pleased, as my count had dropped steadily from 70 or so, where it was for a year, to high 20s after I got a flu vaccine last fall. Steroids did not help me.
I have also just started Avatrombopag after having serious side effects with N / plate injections. Just weaning of steroids now. Let me know how you go on with the medication, they tell me alot less side effects with it. X
Hi, that was quite an old post that you replied to. Avatrombopag didn't work on its own for me so now I take a combination of Avatrombopag and Fostimatinib and this works really well. When I was on just Avatrombopag I didn't suffer any side effects and because you can take it any time and not worry about when to eat, it is so much easy to manage than Eltrombopag which is really affected by food. Hope this helps 😀
Does anyone else have a very dry mouth on Mycophenolate?
Anyone have their speen out?
Does anyone have any good news?
