Revolade for Children- Side effects?

[bhakargs]

Hi All.

My son who is 5 years old has had ITP for over a year and half now and the doctor keeps pushing us on why we are not signing up for Revolade. He says that the majority of his child patients are taking it and it helps them lead a normal life. He also says that he has not heard of any side effects in children. My son is not currently on any medication. He does continue to have bruising, but we are managing this by making sure he is not involved in contact sports etc. The school has also made reasonable adjustments for him at playtime also. We do want him to have a normal life so he can play with his friends, play cricket, jump on a trampoline (something which the doc says he cant do at the moment).

Has anyone observed or heard of any side effects in their children during the use of Revolade?

I have read that there are risks of liver damage and marrow fibrosis- has anyone come across these issues?

Any information would be much appreciated!

[Bellazac1971]

I'd be really interested to hear outcomes too. We've had a Haematoligist appointment this afternoon and our daughter will most likely be starting this tomorrow 🙂

[S38abcd]

My son is 10 now n count is 10 also.His doc said Revolade is being tested on adults and no data on use on children is available. Im not giving him any drug, only being watchful.By the way how much is ur son's count,if its OK without medication I think its better to keep it as a last option..in case of injury he needs transfusion which is very rare thank God.

[bhakargs in reply to S38abcd]

Hi. My sons last count was 13. At the moment we are watching and waiting.

[S38abcd in reply to bhakargs]

hope things go well for our kids..its hard for parents.

[Kyriak51 in reply to bhakargs]

Hi kyriak51 here, I just responded to your post with reading this one that states his count is 13K and you are still in a wait and see mode. Are you aware that a count of 10K he is at risk of a cerebral bleed, what on earth are you waiting for????:(((()

[Kyriak51]

Hi bhakargs, does your son have immune mediated ITP? What's his platelet count? There is no cure for ITP at this time but it can be managed with medications; with out treatment his platelet count will continue to drop putting him at risk for excessive bleeding. If his counts are below 50K he will have excessive bleeding when he loses his first tooth. My platelet counts range from 50 to 80k, I bled for 14 hours with my first extraction not a good experience; I now keep a bottle of Hemodent, which contains epinephrine and stops the bleeding with in one hour. As mom's we don't want to see our children suffer, please reconsider your decision not to medicate. I've had ITP since 1990's I refused steroids and waited for a drug to stimulate my body to produce more platelets which became available in 2008 by which time my platelets had dropped to 5k. Please learn as much as you can about ITP, it's causes and treatment. Check out mayoclinic.org for more information. Kyriak51

[BurntToast in reply to Kyriak51]

Not really true. In the US they believe this but in the UK we tend not to treat children at whatever count unless they have bleeding symptoms. We treat on symptoms and not the numbers. There has been shown to be no difference in outcome with both approaches, difference is that the children who are non-medicated don't suffer the side effects that the medicated do.

With regard to Revolade, the idea is to get the count to about 50 and no higher as a high count on this drug can cause clots to occur. And with a count of 50 children are still on restricted activities in general.