revolade eltromopag

[salmagal]

started taking revolade 10 days ago count had went from 1 to 28 when checked on 8th day dont go back to my clinic till another 13 days on day 10 have had small blood blisters on gumline but no bleeding from my nose so far so hope all is going good i feel the unpredictability of i t p is one of the worse things about this condition

[Tata]

I took revolade for about two months as a bridging treatment before splenectomy. No side effects at all until I stopped taking it after surgery. Then my counts dropped as my hema expected. However, my platelets increased spontaneously a few days later and continue to be at 100+ levels. I wish you all the best in your ITP journey

.

[salmagal]

thanks so much Tata for this encouraging news i dont have any surgery planned my so dont know how long i can stay on this drug i really hope you continue to do well thanks salmagal

[NickyD]

Hi Salmagal My consultant is going to apply for me to go on eltromopag. He has to fill in some forms see if I can get it. I have had a splenectomy and that did not work. Romiplostim makes my count go sky high and then crash. I am hoping this new drug will stabilise my condition. How was it administered? Romiplostim is given by inejection. Nicky

[salmagal]

Hi NickyD My consultant also had to apply for eltrombopag been on it 12days i am taking 50mg so far been ok you take it at 10pm at night you cant have any dairy products or indigestion remedies some mineral and vitamin supplements 4hours before and after your med ive been using dairy free products after 6pm then go back on dairy next day im not sure i think this drug is tablet or injection form im taking tablet i i really hope you get to try this drug and sincerely hope it works for you as like me if this doesnt work you have to wonder where we go next thanks Salmagal

[NickyD]

Hi salmagal. I have just come out of hospital - having gone to A&E on Tuesday night with purpura and a count of 4. where do you live? It seems there is a problem with me having eltrombopag - to do with the cost of it. NickyD

[salmagal]

Oh NickyD so sorry about this but i have heard its to do with where you live i live in Scotland i have heard its not available England and Wales which i feel is shocking did they get your count up how do you cope with this constant yo yo all the time I will know thurs 10th if my count has stayed up if its even in double figures i will be happy how are they going to treat you now this should not be about money im sure there are not to many people who need eltrombopag please let me know how you get on kind regards salmagal

[NickyD]

Hi Salmagal. NICE will not agree to fund eltrombopag. My count was 4 on Tuesday and as of this morning it was 205. That is with Romiplostim and four lots of platelet transfusions. As fast as my count goes up - it then comes down. On Monday last week my count was 1007, then on Thursday last week it was 507, then on Monday this week it was 34 and on Tuesday this week it was 4 - so off to A&E. No stability at all. Yesterday it was 108 and today it was 205....

I have to have two blood tests a week, I see my consultant every week and then I sometimes have to go in another two times for injections of Romiplostim. If we dont catch it as it crashes that is when I end up in A&E. All very traumatic and time consuming. If I cant get eltrombopag they will start on some cancer drugs - but reallyit is just trail and error. I find it very stressful and rather frightening.

Keep me posted with your progress with eltrombopag.

NickyD

[Hidden in reply to NickyD]

Nicky

have you had a spleenectomy? i was watching a lecture by Drew Provan and i thought he said the NHS would fund eltrombopag in england in those who have had a failed a spleenectomy. i might be wrong but i guess they have nothing to lose by checking, sorry you are having such a rubbish time.

hopefully something will work soon .

[NickyD in reply to Hidden]

Hi yes I have had a splenectomy, that was last year. How is your ITP? I am back in today to hospital for an injection of Romiplostim, not sure what dose, will find out when I get there. NickyD

[Hidden in reply to NickyD]

it is so horrible having to be in hospital isn't it. I had a count of 1 ten days ago and had first romiplostin, then had iv ig the next day count was 53 4 days later had second romiplostin on friday and it was 75 which was amazing a has been 11 and below for 4 months. so fingers crossed things will stay that way. i really hope romiplostin works better for you this time. it is so unfair you cant get eltrombopag.

libby

[NickyD in reply to Hidden]

So you are going into hospital for Romiplostim quite often then. I cant take IVIG as the last time I had it I got meningitis and a retinal bleed. Your count seems very low at 11 and below. At that count do you get lots of bruising? I am going back to hospital this afternoon for some more Romiplostim. Dont know the dose - will be told when I get there. But when I have it, it normally makes my count go sky high ie over 1000. then it crashes down in a few days to less than 100 and if not caught quickly I go to A&E for a platelet transfusion with purpura. How do you cope with a count around 11? That is way outside my comfort zone. I would be zero within a couple of hours with a count that low.

[Hidden in reply to NickyD]

i have been going to hospital just for a quick injection and blood test once a week then see doc every two weeks, but my doc has saud if it stays stable i can hopefully start injecting at home soon then hopefukky just monthly appointments. when my coiunt is 11 i just bruise easily no other symptoms. i have had a count of 1 for about a month out of hospital, got purple dots and some mouth blisters but no serious vleeds.

libby

[NickyD in reply to Hidden]

HI Libby, Tell me, when you have mouth blisters have they ever burst? I get purpura when my count goes below 10 and then I go to A&E, if I dont get treated then I my mouth starts to bleed and I get bruising on my body. I have never had a serious bleed and I think it would freak me out if I did. I have had blood blisters in my mouth only once and that frightened me. My count just goes up and down all the time and I need to have blood tests twice a week. Have you had bleeding anywhere else on your body? Nicky

[Hidden in reply to NickyD]

when i was diagnosed at christmas with a count of 0 i had quite a few mouth blisters but they never burst my gums bled a little just when i brushed my teech. i have been on tranexamic acid since. When i get a count of 1 i get the odd mouth blister and get loads of bruises. but i have never had a serious bleed. i have been out of hospital for a month with a count of 1 whilst waiting to see if rituximab worked and didnt have any serious bleeds. got third romiplostin tomorrow. jut got an appointment to see dr provan to see if there is a way for me to have another baby

did you have your romiplostin yesterday ?

libby

[NickyD in reply to Hidden]

Hi I am waiting to have a phone call to see if I need treatment today (Friday) . I had Romiplostim on Tuesday but may need some more today. Have you seen Dr Provan before? Is he your consultant? I have lots of Romiplostim and my count has not yet stabilised - we are looking at the

next step - but not yet sure what that is going to be. When is your appt with Dr Provan? Nicky

[salmagal]

Hi NickyD its no wonder you feel so stressed and frightened as you have been a long while trying to get an even balance i have only had ITP since feb and feel as if im in limbo trying all these different treatments hoping each one is the one to work I really do wish you well and will let you know how i do on thursday kind regards salmagal.

[NickyD]

Hi Salmagal. We are each on our own road of discovery. No one has the same experience and so we each have to find out what works best for us. Yes, keep me posted about Thursday. NickyD

[salmagal]

Hi NickyD hope you are well will surely keep you posted my next wonder is how long i can stay on this drug if it works as i have heard count crashes when you come of the drug but as you say we are all on our own road its really one day at a time kind regards thanks salmagal.

[NickyD]

Hi While I was in hospital last week the pharmacist printed the information for me about eltrombopag and it is purely designed for adults that have tried all other avenues for ITP with no success. There is a chance that I will be put on some chemotherapy drug to see if that works instead. You have been on it now for some time - how are you feeling? Any side effects yet? NickyD

[jmc37]

Hi I was put on eltrombopag after a reaction to IV Immg...it took my platlets from 2 to 67 over a 5 week period then fell back down to 10. They stopped it after that as it was not working. I then had Nplate which caused a reaction I was so unwell and it only took platlets up to 78 thats the highest they have been since Oct last year. I am now on Azathioprine (heard its a chemo type drug but not sure) and platelets have risen from 18 to 68 in two weeks. I also attend hospital every week so hoping this week they have went up again. Only problem now I am having pain in chest/upper abdomen and back so may have to come of these to. ITP is so difficult and I find myself tired all the time, I have also tested positive for Lupus twice and poitive ANA so not sure if its this that causing the tiredness or Lupus.

[salmagal in reply to jmc37]

Hi jmc37 sorry to here eltrombopag didnt work for you i find trying all these drugs makes me feel bit scary as you think they are working then suddenly crash i just have to hope eltrombo works for me also hope they find a treatment that works for you take care salmagal

[salmagal in reply to jmc37]

Hi jmc37 hope you are feeling better been to see my consultant today platelets have went down to 22 from 28 2weeks ago consultant feels result not as high as expected i have been on 50mg of eltrombopag a night now to start on 75mg wondering what dose of this treatment you were on did you have any side effects thanks salmagal

[NickyD]

Hi jmc37, my heart goes out to you. When you say you attend hospital every week do you mean you are seeing your consultant or are you being admitted? Your count seems to be quite low and I worry if mine goes below 200. Have they suggested any other course of treatment if the Azathioprine does not work? It seems to me that I am kept in the dark regarding all kinds of treatments that can be given and I end up thinking that the one I am on is the last one that can be tried and if it does not work then there is nothing else in the medical bag to try. I find the stress of it all incedibly difficult to deal with and I am possibly going to embark on a course of chemo type drugs too. We should keep in touch with regard to how you get on with the next stage. Take care. Nicky

[salmagal]

Hi Nicky D how are you hope you are well. this is night 22 of eltrombo so go to clinic tomorrow so far ive had no major side effects feeling very apprehensive but trying to look on the bright side thanks salmagal

[NickyD]

HI salmagal Let me know how the appt at the clinic has gone. Keep looking on the bright side. Nicky

[salmagal]

Hi NickyD how are you hope you are good went to clinic yesterday platelets had dropped to 22 from 28 consultant said they are not reacting as good as they hoped however has given me another 14days at higher dose 75mg to see how i do said they can try romiplostim still trying to look on the bright side thanks so much it really helps to hear from you all thanks salmagal.

[NickyD]

Hi salmagal, What is your normal range for your count? If you are usually at 22 then there is nothing to worry about. Do you have side effects with the eltrombopag? I cannot get eltrombopag because NICE will not pay for it so I am on Romiplostim. With that I have no side effects but my count yo yos dramatically. We are trying to find some stability with the Romi but so far there is none. Had bloods done today and my count is 319 so have to go in for my injection tomorrow. Then bloods again on Thursday and may have to go in on Friday. Do you get bruising when your count is low? I only get the purpura - then I know my count has crashed and it is straight to A&E. Was admitted two weeks ago had transfusions for three days plus an injection - then home. I don't like hospitals - they are full of sick people that keep you awake all night. You say you have 14 more days at your higher dose - how often are you having your bloods done? NickyD

[salmagal]

Hi NickyD unfortunately my count has been crashing down to 0 since ITP started in marchi have had steroids with small response then crash same with immunoglobin same with platelet infusions taking eltrombopag 50mg took me to 28 but then began to drop so im now on 75mg for 2weeks hoping this will give count of 20 + thats the plan for now since starting eltrombo having blood done every 2weeks have to phone my clinic if any bruising or bleeding so far all clear which lets me hope platelets are steady as i spent most of march and april in hospital i agree with you as to not liking them i have not been admitted at all in may so i am hoping this is the higher dose eltrombopag working go back to clinic on 24th may if my count crashes i get bruising blood blisters and some light nose bleeding none so far so heres hoping how does Romiplostim work how many times do you need to have in injections in a week do they crash quite quickly you seem to have a very stressful time hope they can stable you soon good luck salmagal

[Hidden in reply to salmagal]

Romiplostim is a once a week injection. If it doesn't work at the first dose they higher it each week until you are stable on it. Once stable you can probably self inject each week at home and not go to the hospital so often. It's a great drug for me with no side effects at all and although my counts still go up and down a bit, generally I'm at a safe level and can just forget about ITP. My doctor is Dr Provan.

[Hidden]

Nicky I don't understand your romiplostim regime. Romiplostim takes four or five days to work so why do they expect an injection on Tuesday to have had effect by Friday? And then they give you more and wonder why your count eventually goes sky high. Am I reading it right?