I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so taking Jakavi ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant. He, said "No, stop taking it until Covid symptoms subside, the resume normal dose".
Hi Andrew8, I have PV and take 20mg Ruxolitnib per day as part of the Mithridate trial. I have not been given any advice about stop taking it should I get covid. I am seeing my haematologist and the pharmacist on 30 December so will raise this with them. I am 69.
We are all different, so individual advice from your own haematologist is essential, because only they know your condition, symptoms etc. My MF seems to have been caused by long term exposure to Benzene, I am advised, a very toxic chemical contained in petroleum products ( such as petrol and paints ) but even still used as compounds in fruit preservatives, even some hand sanitizers. Look for products containing Benzene or something starting with Benz ( not the cars). It is difficult to believe this is still allowed, but then profit often takes precedence over safety.
I would get a professional second opinion on this, as I remember reading the opposite.
I’ve just had a quick look on line and found this. If you scroll down you will see Covid and Jak inhibitors.
Hi Andrew I have Myelo/fibrosis and take Ruxolitinib. I have had covid and was told by my Professor at the time, you must not stop the Ruxolitinib. When he first prescribed the Ruxolitinib he stressed to me not to stop it at any time only with his instruction.
Hi Andrew8, , it's a dodgy choice to simply stop Ruxolitinib / Jakafi because it's a drug that needs a tapering dose down to gradually wean off it. I've been on it twice and that has been the way my Consultant at Manchester Royal instructed. Even to the extent of drawing up a reduction timescale the last time I came off it. I'm unsure of the side effects of stopping it directly, but likely to do with blood counts going up or dropping down too quickly maybe.
Chris
I am with the other posters here and would be inclined to get a second opinion on this. An additional article was posted here about this a few weeks ago:
news-medical.net/news/20210...
Personal experience, though not with covid, has been a potential cytokine storm after my rux dose was halved and not just tapered down. A simple cold turned nasty within 24 hours and I was in hospital for two days. The duty consultant surmised it was caused by the halving of rux too abruptly. This summer I had pneumonia and the non haematology consultant stopped it - I gathered it was normal practice for certain drugs to be stopped but they didn't seem to have checked rux. I had to get them to contact haematology who confirmed it shouldn't be stopped.
AndrewI have spoken to several experts on this subject and the advice was definitely don’t stop taking it if caught Covid. I think that advice is on the ASH website also. It’s also generally advised if coming off Rux for any reason to taper gradually. So sounds like the advice your Haem gave you is almost certainly wrong, maybe wise to think about that.
The link from DJK12 is not complete for some reason.
Here it is
hematology.org/covid-19/cov...
<<However, the drug cannot be stopped all at once in these patients once they develop COVID-19 because of the rebound spike in cytokines, which can precipitate severe systemic inflammation and death.>>
It was part of the discussion of Rux vs vaccine
healthunlocked.com/mpnvoice...
If you are concernd about vax response you might also discuss with your Dr the long acting antibody treatment from AZ (Evusheld) It's FDA approved, but not sure about UK.
<<Only antibody therapy authorised in US for pre-exposure prophylaxis>>
<<we’re excited that Evusheld is now available to help protect vulnerable populations, such as the immunocompromised, who are unable to mount an adequate response to vaccination and who remain at high-risk for COVID-19>>:
Low saturation with PV and Jakavi 20
Blurred vision with PMF AND Jakavi
Jakavi advice please
Hydrea VS Jakavi
