Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article mpnforum.com/jakafi-warning... which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has started to worry me - sorry but I cant lie!! Have I misunderstood it in some way or should we be concerned about the long-term effects of this drug???? HELP!!!
Should we be worried about this article in MPN F... - MPN Voice
I am checking this.
We have noted a couple of threads recently on the forum. Just a few comments below:
This drug was reported initially to be associated with risks of Wernickes encephalopathy. Recently Profs Harrison and Mesa reviewed the data which led to new data reducing these concerns.
The status of fedratinib is awaited from licensing authorities.
Concern about whether JAKAFI might accelerate new mutations?
A provocative article has been published on MPNforum. This reviews data showing that patients with mutations in genes other than JAK2 CALR MPL responses appear shorter and if patients develop new mutations on drug and stop the drug they do not live long.
However we have also seen that patients rarely develop new mutations, and have 2 large studies showing that JAKAFI prolongs life in patients with any mutation profile. Much other data is also consistent with patients having a better quality of life and longer life on JAKAFI.
Please bear in mind that the well written article is provocative but does not prove any risk of JAKAFI worsening disease. Do not suddenly stop taking your drug on the basis of this article.
There has also been some speculation about whether adding metformin to ruxolitinib might be beneficial. This is on the basis of non human work - mice and cells in the lab only. It is exciting provisional data. This will probably be properly tested in a clinical trial in the future.
Thanks Maz for the information on Jakafi and the other drugs. So many studies publish thier findings which can be significant or not significant dependending on who is reading them, but this does not mean they present a full picture. At this point I need to say that all I can do is trust that my doctor has my best interests as the priority and stays up to date with the best quality evidence.