Does Ruxolitinib make you "extremely vulnerable"?

[Oscara]

I understood it did, because it depresses the immune system. But there's no sign of a letter from NHS/government. My friend who has a lung condition had hers last week. Am I making an unnecessary fuss, shielding?

[D1i2a3]

Hi I’m on Rux and Hydroxycarbamide l got my letter a few days ago Diana

[socrates_8]

Hey Oscara...

Your lucky over there that your governments even issue specially addressed letters to MPN sufferers... We certainly do not receive similar 'Down Under' ...

However, my understanding is that if you have Myelofibrosis (MF) that you would most likely be considered as Higher Risk.

People w/ MF are usually on Ruxolitinib, and that is an immunosuppressant, meaning that they are all at a heightened risk of infection...

On the other hand, if they are reasonably fit & healthy, (such as myself because of my lifestyle changes, diet & exercise regime...), then they / we possibly have less to be concerned about... possibly...

Stay safe & well...

Best wishes

Steve

[MCW22]

I am in the same boat. I have pv Jak2 + on ruxolitinib and I have not received a letter. I asked my consultant if I should be on the shielded list and he said yes but it wasn't up to him to put me on it. I'm not sure I believe that. I then spoke to my Gp who tried to work out how to flag me up as vulnerable but after several minutes on the computer he gave up saying he would have to speak to the IT guy. All routes online send you round in circles, always ending up back on the government self registration page which I had already filled in over a week ago, as a result of which I received an email saying they would check with the NHS. I have heard nothing since. Without the government getting confirmation from the NHS they cannot pass your details on to supermarkets in order to be able to shop online. It's a catch 22 situation

Carol

[Heidi-W]

Definitely keep shielding Oscara. GP practices only in last few days getting new ways of checking for more diagnosis codes so they are still doing the work. As detailed on Maz's post from 30th MArch from the MPN specialists being on the rux does put you in the extremely vulnerable group. I would forward that link to your GPs as as lot won't have that information and then they will be able to add you to the list. Like Carol I registered on the government list last week but still not heard but sent e-mail to my GP with the MPN voice link and she agreed that I should be on the list and was sorting it with their admin. I'm afraid some practices may be more efficient than others at getting this done and likely depends on their staffing numbers at the moment and their practice population.

Please keep shielding for your own safety and good luck

Heidi