Does Revolade has a negative impact on the organs or any other part of the body?

[Atlas2022]

I am in Revolade 4 months now 75mg every day. I was wondering in which organ Revolade effects negative our body. As any drug you take has a negative impact somewhere. And one more question: I have read ITP patients they were on Revolade for years, so if you were on Revolade and you stop taking it , your platelets might stay steady or it works the same way as the stéroïdes? When you stop taking it, your platelets start to go down? Anyone had a similar experience to share? Thank you for your support

[Gabriella28]

Hello Atlas, your concerns echo many I have had since being on this drug. I remain on 50mg/day after initially being on 75. That was nearly 2 years ago. My platelet counts have fluctuated wildly - up and down. When they seemed to settle at a reasonable level I asked to go down to 25mg. However the result was immediately negative. I tried for 2 months but it scared me so I went back to 50mg. Even remaining on this dose is not foolproof. For instance in December the count was very good (for me) at 119. Then in February they’d plummeted to 32. I’ve been on 50mg for the past 6 months so no idea what caused this nosedive. One doctor told me that we can live ok with far fewer platelets but what has always worried me is internal bleeding. However, like you I do also worry about the long term effects of Revolade on the body. Reading the contraindications that come in the box, and various medical reviews on the internet, it would suggest long term use has a potentially damaging effect on the liver. Whenever I ask a doctor about this they look at my records and just say they monitor this every time I give blood to see my platelet count and it has been normal. Maybe you could reduce your dose to 50 once your platelets seem to have stabilised at a reasonable level. I think my count was in the 60’s before I could do that and for me 60’s became my normal. A major gripe I have is that Revolade has definitely caused hair loss. But in the scheme of things, I am grateful to feel otherwise fit and healthy.

Good luck Atlas. Try not to worry. Worry makes things worse.

[Atlas2022 in reply to Gabriella28]

Thank you Gabriella for sharing, my doctor says that i will take Revolade 2 more months, 6 in total like you and then we see if i proceed with splenectomy which i am not so much for doing it. I think that will be my last option. How long time you have ITP? Have you tried not to take any medication? Me for 5 years i did not take anything and my platelets were between 40K to 60K with no bleedings, bruises ect just monitoring. I hope the best for both of us! Thank you again for your prompte response

[Bladerunnerspa]

Well. Revolade has at least 2 potential side effects to 2 different organs. One is liver and the other one are your bones. However, both organs can be monitored and both situations are reversible. The proportion of people that needs to stop the medication due to a deterioration of these organs is small. You probably damage your liver more with alcohol consumption

[LifeafterITP]

I have been on Revolade for 6 years. The first 4 years 50mg/day. My platelets were less than 20 when I started and over 4 years gradually moved to over 150. For the last 2 years I have been on 25mg and my count has varied between 60 and 80.

Revolade like many other drugs and alcohol can damage your liver. I get a blood test every 4 months to check my platelet count and monitor my liver. So far my liver is unaffected and healthy and I live a completely normal active life.

[Lynney11]

I have been taking Revolade for the last 5 years. It had a dramatic effect on my count, going up from around 40 to over 100. I started on 25mg, but last year my count plummeted to 28. It turned out that a drug I had just started taking for a condition unrelated to ITP was affecting my body’s ability to absorb Revolade, so I had to stop taking the other drug. After a few weeks my count rose to over 100, until the beginning g of this year when my count fell again to 41. At the moment I am taking 50mg of Revolade to try to counteract the drop, and I will be having another blood test next week to see if it has risen. I hope it has as Revolade has been the only thing that has kept my count elevated. I also experience some hair loss, and taking a lower dose will go some way to lessening the loss. As for liver damage, I am monitored every two months and so far my liver, bones and kidneys are very healthy.

[sam_b]

Hi Atlas, I've been taking Revolade (Eltrombopag) for just over two years. I have chronic primary ITP. I was offered it for a couple of years beforehand but was reluctant to try because the same consultant who wanted to perform an urgent splenectomy when I first met him in 2013 (thankfully I resisted) shared that "these kinds of drugs can cause more cancers" which totally put me off.

I first started a dose of 50mg in Jan 2020 with low platelets again < 20 and ended up in hospital after a unrelated misdiagnosis by a new GP at my health centre.

At the time I was having bloods taken daily and my platelets shot up to 300+. Although I felt very energetic I wasn't allowed home for over a week as Doctors were concerned about risk of stroke. Apparently regardless of platelet levels Eltrombopag can cause pooling of blood.

My dosage has been 25mg since then and my platelet levels remained around 80 however recently they have dropped again and my dosage was increased to 50mg. Within weeks though a Haematologist suspected I'd had the symptoms of a "mini stroke". I recently had a CT scan which revealed no changes and am back on 25mg.

I definitely feel more muscle and joint pain since I started taking Eltrombopag and like others suspect have possibly suffered some other minor side effects too. I had already experienced negative impact from longer term steroid (Prednisolone) use and after Ritxuximab infusions in 2015 all of my joints swelled up, I ended up in hospital for weeks and it nearly finished me off. I am sharing my personal negative experience but hope you are not put off as others widely report that Revolade has really helped them as you can see in the posts above. I personally just have a poor track record of suffering reactions to certain medications.

Speaking for my own experience of Revolade though, it is a trade-off between allowing platelets to drop and feeling so fatigued it affects my daily work or taking the daily dosage and putting up with the pain and having enough energy to do what I want to.

Personally, I would take as a fewer meds as possible and am encouraged by what I have read over time, that some chronic ITP sufferers have few or no symptoms even with platelets in single figures. I am also now more inclined to agree with others that maintaining a healthier diet, taking more exercise and reducing stress helps with ITP.