I’m very new to this as I haven’t needed anything like this in all my life, as selfish as that sounds. I’ve had itp since I was 17 with a brain bleed that I lived through at 20 which amazed the doctors and my poor parents. Since then we tried several things and the only thing that worked for me was either dex or Vincristine, I opted for Vincristine as I was young, it gave me great results and I looked normal without the dex side effects. We then decided to stop having Vincristine as I was on it every second month. The doc wanted to see how things would go and also discussed what the remifications could be if I wanted kids. Since then I have been in full remission and have only taken the odd dex 0.5 tab if I have ever had a really bad flu about 10 years ago. I know this as my first born is 10 and haven’t needed anything and would go for a blood test every second year, until now! My world has calapsed on me and struggling to deal with the realisation that this never really goes! For the last month my blood has been under 10 more like 4 - 6 (same really) and the doc has put me on Eltrombopag, 4 days in. I am wondering if anyone has any experience with how long it usually takes to come into effect? I’m hoping this will work for a while until I clear any dex in my system and then at a later date try something that will potentially put me into remission again, as I’ve heard this doesn’t. Any advise would be great and much appreciated.
Cheers James
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Jamesheather1
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As I seen eltrombopag work instently because my wife have ITP from last 4 year last year doctor start eltrombopag 50 mg. Before start tablet wifes plt count was 40K and after taking for 2 days CBC shown plt count 154K and after 14 days its 80K but affected Liver so doctor Stoped it.
All the info I have has said the opposite. Is there someone who has told you this, have you experienced it or can I read it somewhere? Sorry for all the questions.
Hey, it's not possible to post links but search for remission studies. At least one showed after 4 months coming off of it was possible for a good % of participants. I know the manufacturer claims if you go off the meds the count will drop, however, as with anything in this condition, it's effect probably varies from one to another.
Personally, it helped me tremendously. Just keep close tabs on counts, they can jump high, especially when you have no spleen.
Good to know BellaMo. I’ll look up remission studies again. Here’s to hoping for Eltrombopag to kick in and hopefully give long lasting results. I hope all is well with you now. Have a great day.
Hi, I really must start proofreading my post before hitting “reply”. I meant to say: “count of 40-80K is good enough for me to function fairly well”. Be well
Hi BellaMo just finished reading all responses to Jamesheather1 and I’m confused about all the reports of “remission “; what is your definition of remission? Is it return to normal platelet counts (150K to 450K ) with continued medication ?
I started treatment 11/ 28/ 2009, failed dexamethasone, IVIG, and 4 weeks of Rituxin and weekly platelet transfusions during Rituxin infusions; platelet remained at count 6K to 10K. Started on Nplate 01/ 2010 at lmcg/kg, counts increased to 20K after two weeks. I’m currently on 8mcg/kg (maximum dose is 10mcg/kg) weekly injections to maintain my platelet count 40K to 80K which is good enough for me fairly well. Unfortunately my platelets dropped from 46K to 14K in seven days related a depressive episode due the death of a childhood friend. My platelets are struggling to recover to baseline currently at 15k to 30K as it generally takes 4-6 weeks to recover. For me remission is a stable count of 40K-80K with the help of medication as we don’t have a cure for ITP, research is on going. Be well
Thank you for your quick response. I have one more question, did you develop ITP after a viral or bacterial infection? Children generally develop ITP after serious infections and recovery is much better then in adults. I’m much older than you and refused all treatment for 15 years until I was too sick to refuse which may have compromised my body’s ability to respond to treatment.
You’re very fortunate to have had 10 years of relatively normal platelet counts. You’re in the prime of your life, let’s try for another 10 year remission! Be well
Here is to hoping! I suffered tonsillitis as a young kid twice a month which could have been a factor. I removed my tonsils as an adult st 27 years of age, my choice then.
Thank you for the well wishes, you’re very kind. I am hoping the same thing! Hard for a 6 and a 10 year old to see their old man in this state when they have never seen it before. All should be fine and will update on Eltrombopag.
I know what you meant 😊. I hope your platelets rise also. Yes, I’m the same as I’m on dex and haven’t slept in 48hours. 10pm in Australia, so also hoping for some sleep tonight. Talk soon James.
Hi James, I similarly had it for 22 years! Also nearly 40 now. Early days prednisone helped and then splenectomy. I relapsed one year after splenectomy and then was in remission for 9 years! I also thought it wouldn't come back but it did. I had rituximab 4 years ago, after a course of MMF and am still in remission now. Have you tried it?
Thank for the reply. I haven’t tried MMF and rituximab won’t get subsidised in Australia until they have tried Eltrombopag. Rituximab was my preference with the remission stories you here. I am hoping this will work but will start pestering rituximab if not. I am so glad you have gone back into remission. I have only relapsed for just over a month after all that time, that is why I wanted something that had a good track record with remission.
oh, I see, it's the other way around in the UK: eltrombopag is given once everything else failed, it's the last line of treatment. I hope it helps you, there are remission stories on eltrombopag too.
Good to know. I’ll bring it up with my hemo as I know she has the power to seek subsidy’s if she sees fit as the drug is ultra expensive. Anyways here is fingers crossed to Eltrombopag. I’ll be sure to try and look up remission stories again. Thanks for the reply.
Hi, I was diagnosed with ITP in 2009, and was just monitored for 4 years as my count never dropped below 60. However in 2013 it dropped to 29 and I had to have treatment. I was put on steroids which worked briefly, then IViG with the same result, then Rituximab, again with the same result, ie an initial huge rise in platelet count followed by a spectacular drop after a couple of weeks. Then came NPlate injections which kept my count in the range of 40-60 for three years. Note I never went into remission. The about a year ago I asked to try Eltrombopag and the result was phenomenal! My count rose to 487, so the dose was reduced to 25mg daily and I am very satisfied with a stable count of 120 or thereabouts. I am checked regularly for side effects and so far so good. The one thing to be aware of when taking Eltrombopag is that it can cause eye problems such as cataracts, however I am not affected as I have had cataracts removed in both eyes (both before I went on the tablets). I don’t know if my haematologist will ever take me off them to see if I have gone into remission, but I keep a positive outlook and don’t let the ITP rule my life. Good luck.
Great story and great to know how successful it’s been for you. Yes I have lived a normal life socialising and being a dad with know worries until now, which has hit me for a bit a 6. I will get over it and except it again like I did all those years ago. Here is to keeping positive and leading a normal life again on Eltrombopag. Thanks for the reply.
Hi 🙂 Speaking as a parent with a teenager on Eltrombopag. Bella’s count jumped quickly , ie into the high 100’s in less than 2 weeks but the side effects of the meds meant that the quantity had to be halved and in turn her count fell. It’s in the 40s still though 🙂
Hi Bellazac1972! I'm mother of a teenager girl too. My daugther is 15 years old now. She started a few weeks eltrombopag and so far so good, her numbernumber has increased from 6 to 60 in 3 weeks. What i would like to now is what does your daughter do to control her menstrual bleending? My daughter takes the contraceptive pill withaut stopping so she never bleeds. Sory for my english! I'm from Portugal and my English is not very good. Thank you!
Hi James - I was on Entrombopag for about 6 months (Spring- Late winter 2016). Initially it worked however as I tapered off Prednisone slowly it began to not work - even with being increased to the highest dosage possible. This then left me open to a bouncing platelet count which then led to a brain bleed in Jan 2017. I was so hoping that it was going to work seeing as it has some of the least side effects of all all the therapies and can be self administered. Unfortunately it comes with alot of dietary restrictions when you are taking it but fornth e hope it brought, it was worth it.
tyneir .. I think I am the same as you .. promacta had got me up to 60 thousand 3 weeks ago .. 55 k last week and 48 k this week as I am getting off the prednisone the count goes down .. very depressing and the issue is getting off the prednisone and praying promacta can at least keep me in the 40s … how low were you down during your brain bleed ???????????? you must have been extremely low ??? I hate this disease especially when I wake up in the morning and see these round blisters on my arms and legs .. I will pray for you .. stay in touch and hope for a cure .. jimmy
Hi James, I hope Eltrombopag works for you and brings your levels back up. I found out I had ITP late 2016. I have had every drug possible to bring my levels back up but nothing worked, so I was left with the splenectomy Choice, so I had that done at the beginning on November. so far so good with my levels. it's such a crazy thing ITP. I find the hardest thing is, is trying to explain it to someone as it's so complicated. I gave up football which I had previously played for 14 years so that was a shock to the system, apart from that and going into hospital every week I just got on with having this new condition to deal with, don't get me wrong you still have your up's and downs just like everyone would. it's funny that you say you had tonsillitis a lot as I had it a lot too. I have read a story on here before stating that someone removed their tonsils and it sorted their ITP out. Since having ITP I haven't had tonsillitis. I do wonder if they are connected? here's to having a high level of platelets
monty .. I never said I had tonsillitis ?? when you had the spleen removed and it worked for you .. did you have a liver and spleen scan cause if the spleen is ok then no way removing the liver >> LOL .. so if the speen is the culprit then I will also do it … do you know anything about the scan of the liver and spleen .. god bless all of us .. jimmy
James, I haven’t read all the replies, but this is my experience:
I lived with a platelet count of less than 30 without medication for about 15yrs. My lowest count was 7, the hospital just asked my GP if i ‘seemed well’ and didn’t call me in.
It took us a while to get to that stage, they tried various medications which had no effect or very little effect on my count. And I kept saying, apart from being tired and legs that were always bruised, I was fine.
In the end we struck a deal, I wear a medic alert bracelet, I have regular (ish) bloods done at the GP, I never ignore a bad headache, I go get bloods done if I’m ever concerned, if I ever have an accident I must go to A&E regardless of whether I think I need to (ie/ if I fall down the stairs I must go even if I don’t think I’ve broken anything and even if I don’t think I’ve bumped my head)
And then I was discharged!
It doesn’t work for everyone, but a low count is not always a disaster....
Thanks for the reply Alice. If I used disaster in previous post I didn’t mean to. I’m 40 with two boys that I have always done everything with included coaching there football teams. I still play football except for now. I have not needed to worry about this is the last 12years so it has come as a shock after so long in remission. I will be hoping something works as I have only recently started Eltrombopag and have a few other things try if it doesn’t. My ideal would be higher then 30 at this stage, but that is just me. Please keep well and good luck with the way you handle things. Cheers James.
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