Thoughts please

[Topography52_-]

My consultant is looking at putting me on Revolde ( 4 week trial ) I have all the information beforehand to read I am asking for peoples experiences side effects such like I know it is different for everyone I just want to make the right decision so far i have been unlucky with the other alternative's .

[LifeafterITP]

I have been on 50mg / day of Revolade (Eltrombopag) for 3 years. My platelet count was below 10 when I started. Since taking it my count is normally around 100, lowest was 60 at one test and was 140 at my last test 4 weeks ago.

I have read all the side effects but don't appear to be affected by any of them. I am in my 60's and for me Revolade (Eltrombopag) is allowing me to lead a normal active life. If I was not taking a tablet at bed time I would not know there was anything wrong with me.

I am sure Revolade will not work for everyone as ITP is a complicated condition but good luck with the trial.

[Topography52_- in reply to LifeafterITP]

I think my consultant would like to trial this as my quality of life has deteroited I got shingles 8 months ago now health wise feel it is going downhill the aches the pains fatigue and it annoys me as I have a active job role so I feel it is seeping into this then again it could be another symptom of something else we do not know with itp ... On a brighter note I wish it was it is raining here in the UK onwards and upwards ... Thank you for your input it helpstake care : )

[Heath21 in reply to LifeafterITP]

I too am at this stage. I have now taken 25mg at night for 5 nights. No ill effects so far. Unfortunately platelets dropped so low I had to restart steroids at 10mg as well, until eltrombopag kicks in. The plan is to increase eltrombopag and phase out steroids. Good luck on your venture.

[Poetsister]

I am on this medication and have been for a year. No problems or side effects. Please consider taking this medication it could make all the difference to your health. Good lu k.

[Topography52_- in reply to Poetsister]

I am considering it very muchbtrial and error thank you for your input : )

[JasonJ]

I was on Revolade for almost a year. No side effects, I did have to take a higher dose as gradually my platelet count dropped down even at 75mg of Revolade.

[Topography52_- in reply to JasonJ]

Thank you so far all systems go do we take this medication long term ??

[Hidden]

Hello, I had more concerns taking nplate than eltrombopag and had side effects after every dose of nplate. Eltrombopag, which I have been on for over 12 months now, has been a lot better with few side effects. I am on a 100mg dose daily with a 5mg prednisolone tablet, my platelet count has never been really good, staying at the 30 mark without too much change. Consultant happy with results but as is common now, you never see the same consultant for long and they all have different ideas. Hope all goes well

[MissMariposa]

I have been on this for a year and 2 months now at a fairly low daily dosage of 25mg (something about this med works well on Asians apparently) which to actually too high for me but they don't make a lower dosage and taking 25mg every two days is too low dosage (trust me to be difficult!).

I am having issues with side effects - they were much worse to start with and have settled down somewhat now. I have bone, muscle and joint pain - sometimes so much so it was hard to get up and walk around on some days early on in the treatment (apparently this is really rare though - lucky old me), hair loss & dyshidrosis. They don't come all at once or even at the same intensity or in any type of pattern some days the side effects are killer and some days I am just dandy.

Having said this the meds were very effective for me; brought me up from a low fluctuating count 2-87 to well inside the normal range really quickly when a high dosage prednisolone coupled with IVIg in the same time frame raised my levels up by only a little and was incredibly time consuming (5hrs on a drip...) and unstable. So the side effects are the pay off for not having dangerously low platelet count (below 20) or spending hours a day attached to a drip - this I can live with.

[Topography52_- in reply to MissMariposa]

Thank you for your reply something tto think about ???