Ruxolitinib trial

[maestromaverick]

I've been on Ruxolitinib Relief trial now for nine weeks . This morning got a call from the research nurse . I've got to recon sent due to new information . Anyone know what this information is . Not worried but a little troubled . He is sending me a new info pack but its made me a bit nervous . Can anyone help please .

[beetle]

I've been on Ruxolitinib for about the same time but not in a trial. I have not heard any new info about it so would be very grateful if you would let us know on here what the reason for the re-consent is. I see my Haem on Tues so I will see what I can find out

[Kisses in reply to beetle]

How do you get on with ruxolinitib so far so good for me only been on it two weeks have some difference in the spleen area but gives me plenty of wind anyone else .

[selkie]

I'm about to start on Ruxo, Monday next week. So, i too would be particularly interested to know what this is. is it likely to be specific to that trial rather than to any new outcomes related to the drug itself?

[skodaguy]

The new information is nothing to panic about. Ruxolitinib is a very new drug that has been consistently shown to be beneficial in several trials. As is normal for new drugs the more it is used the more is learned about it in detail but this does not change the early data showing benefit. New drugs are subject to closer clinical monitoring than old drugs. The number of patients taking rux is now into 5 figures.

The new information is that rux is being shown to have an immunosuppressive effect where as it had been thought that it acted mainly on red cell and platelet production.

This has meant that some people have experienced re activation of infections that their body was living with such as TB. There has also been 1 case of Progressive multifocal luecoencephalopathy which is a very rare condition. Unfortunate for the individual concerned but not a reason for everyone to panic. I repeat this does not negate the earlier data showing benefit. Everyone on rux knows it has side effects, this new information just clarifies them .

The legal system requires that this information is given to anyone on rux and may lead to a request to sign a new consent form but the risk has not gone up, just now known in more detail.

A good similar example would be the discovery of penicillin many years ago. At first no one knew how it worked just that it cured life threatening infection. Then people learned it had serious potential side effects such as anaphylaxis, which is a life threatening allergic reaction to it. That risk still exists but most people take penicillin and think nothing of it.

The factual information is from a personal communication with Prof. Claire Harrison. I hope this will calm your anxiety and am happy to answer any questions if I can.

[maestromaverick in reply to skodaguy]

Thank you very much skodaguy for taking the time to put my mind at rest . It is very appreciated . I'm sure others above will be just as grateful . In reply to Kisses question I'm feeling pretty much the same on the trial but obviously still don't know what I'm taking . I have to say though I'm not feeling the cold so much at the moment and my concentration seems a little better . But still feel so tired , still having dizzy spells and eye blurring and breathlessness on little exertion . I'm also having problems weeing . But I live on my own so like everyone else just get on with it . Thanks againskodaguy .

[Kisses]

Hope they get it sorted for you have you had any side effects with the drug yet I have been on it approx 1month now so far so good. Best of luck.