Has anyone in Scotland with MF Intermediate 2 or High Risk and on Ruxolitinib had a letter from NHS Scotland about being extremely vulnerable?
I emailed our MSP about the provision of a similar registration site to the Gov.UK one in England and he's contacting the relevant minister, but it doesn't look imminent. Getting on a supermarket delivery list seems impossible in Scotland unless you're over 70.
We live in Scotland and my hubby has asthma, atrial fibrillation, etc and thought he would receive a letter but he hasn’t. Where do you stay, I’m in the north east? If you were close, I could help a little.
Kind regards Aime xx😻😻
My daughter in law got her ‘vulnerable person’ letter today. She has lupus. Nothing for anyone with blood cancers (as yet).
For help shopping or prescriptions try mutual aid or scotland cares. I’ve used them both over the last 3 weeks.
Thank you Eleanor. That's encouraging letters are appearing. Thank you for advice - I think kind neighbours will help if necessary but good to know.
I live in Tayside, no letter yet but I wasn't expecting one. I have ET and on aspirin only. I'm 59 but luckily retired early. I am just maintaining social distancing and sending hubby to the supermarket I'm just trying to be sensible and avoid higher risk activities. I think my husband and son are getting a bit tired of me nagging them to wash their hands though. I feel the info coming from the Scottish government is a bit sparse. Well done for contacting your MSP to highlight the issue DJK12.
My impression from his reply was that he'd had quite a number of emails on same subject! There are so many new challenges for NHS and government that I guess sorting it all out will take time. I have to self isolate and listening to the news each day that seems the best contribution I can make to the NHS and am so lucky to have a small garden to potter and walk round. - will be first year it is weed free. When, hopefully, this virus retreats do you think we will all go on washing our hands so thoroughly - would be good if we did!
Hey all. I live in Glasgow. I'm 39, have ET and take Hydroxycarbamide, aspirin, bisoprolol, ramipril.. had a heart attack back in 2013, unknown why but turned out was more than likely a clot caused by the ET (diagnosed 6 years later might I add).. I have been told by my nurse who looks after me at appointments that I am not high risk due to my other bloods and organs being in perfect condition, the lungs especially and age. They seem to think that my heart issues and ET will not cause me to deteriorate quick if I catch Covid. No letter or text at all from NHS apart from the email from the nurse.
Sounds as if your nurse is keeping an eye on you - hope everything stable on blood front at moment and you keep well in this difficult time. I'm in Edinburgh but come from the West of Scotland. Hope it is a bit warmer and less windy than the east is at moment.
I phoned doctors this morning receptionist said letters have been sent out to vulnerable patients so I have to wait till it arrives would your doctors practice not be able to give you some indication about these letters?
Yes will do if nothing appears shortly. Was hoping to discover if there was more joined up thinking about MPNs in Scotland than appears to be in England from postings here - thought possible as much smaller numbers involved there might be more consensus, but it will be a steep learning curve for those involved in sending them out and just sorting us all out.
We are in England.
My husband is post PV MF on ruxolitanib.
His consultant rang today to check he was ok etc.
He said he's not high risk as all his bloods are in normal range but to still be very careful and to not go out uncessarry he said going for a walk is fine
He said not to get bloods done until end of may and stay away from the hospital as his bloods have been fine for the last 5 months.
Tracey
I can't say how grateful I am for Ruxolitinib and it has obviously been a success for your husband as well (it is excellent that his bloods are within normal range). With the addition of EPO injections to keep anaemia at bay Rux halted quite quickly a downwards trajectory with PostET MF.
Unfortunately though a very very rare reaction to another drug 5 years ago put me in hospital with pneumonia for nearly 6 weeks and on oxygen for 10 days which has not helped my lungs and apparently left me immune compromised - unfortunately a cold can put me in hospital quite easily - so consultant has advised the self isolation. Family and friends knew before all this to avoid us if they were ill so we were already practising a degree of social distancing but not using the phrase - possibly not invented!
Ruxolitanib has definitely made my husband exhaustion loads better.
He still works full time and has a normal life ,so it's given him a better quality of life .
We just all staying safe to protect all our family.
You take care too!
Tracey
No letter here and out of 30 people who I know with other blood cancers only 2 have received letters. I'm unsure of any benefit of receiving a letter. I've been self isolating for 3 weeks.
SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland
Letters
MF for 30 years
Important phone numbers if you test positive for Covid in Scotland
MF
