Please can I ask if people with ET or PV on aspirin alone with no other significant health issues have been informed by their GP, heamotologist, or received a letter or text telling them they are high risk and should sheild?
I have ET and I've been informed by my heamotologist that I'm not high risk due to only being on aspirin as it does not affect the immune system however, I've read a number of posts from mpners with the afore mentioned being told they should be shielding. Why are we being given different advice ? Is the NHS now advising all people with an MPN to shield??
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Camelian
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Hi, I am only on aspirin, I was advised to have flu jab so GP classed me as a higher risk & to social distance for 12 weeks, she didn’t see the need for complete shielding.
I haven't received a letter I have ET , am on Peg Interferon, aspirin, warfarin, and have a replacement heart valve. My mum is 80 has dementia, needs 24/7 care has multiple health conditions and has not received a letter. If anyone should have a letter it should be her.
Hi .. I’ve been told by GP and haematologist that I’m not high risk .. I have ET plus other health issues (Asthma high blood pressure) on aspirin plus HU .. GP did say things are changing all the time, so maybe others were told more cautious things at the beginning.. but as more data coming through medical advice is shifting.. My phone calls to them was last Tuesday 7th April .. Keep safe
I understand your concern, I have ET, I’m on aspirin and HU as well a mild form of asthma with chest infections at least twice a year from a mild form of any cold., I’m in my early 50’s and work. While I did not receive a letter from nhs England , my GP consulted her colleagues and they agreed that while the et does not make me vulnerable, my history of asthma and chest infections puts me on the ‘cusp of extremely vulnerable’ using her phrase, they advised I self shield for 12 weeks.
While I don’t have letter, She was also kind enough to send over the notes to our phone conversation. This I forwarded to my company and as a result they have provided me with the office facilities to work from home.
No letter yet for hubby, GP said it wasn't their responsibility & waiting to hear back from hospital but yhe Government said all blood cancer patients regardless of treatment are high risk so going with that & hubby is only going for walks no contact with anything or anyone outside our household (although still attending hospital) - can't get him on board with the shielding idea so doing what I can to protect him. If you need a letter for work then push for it and stay safe as advised by the Government announcement.
However, I am not going anywhere other than my daily exercise... No shops or anywhere. And that's what I believe is the best thing to do at the moment.
I'm only on Aspirin and have ET . No letter yet . I registered on Gov.co.uk but received a text saying I needed letter from GP or Hospital confirming my risk. I haven't been in touch with either but am staying at home, exercise in garden and no shopping. All advice is so confusing, too many different opinions!
From posts I'm reading our risk level appears to depend what our GP or heamotologist thinks and lacks consistency.
For those that are shielding can I ask those that live with others how they are managing? My husband is an essential worker so still working. We try to keep as separate as possible in the house but this is difficult when you share the same facilities such as bathrooms? I was just wondering how others in the same situation are managing? Any advice would be welcome.
Thank you for all the replies please stay safe.
I’m on hydroxycarbamide and aspirin for ET and haven’t received a letter. Haematologist said I should continue taking my medication even if I develop symptoms that could be COVID-19. It does appear to be a bit of a health board lottery with regard to MPNs and how much we are at risk.
Camelian I am shielding and eat separately from family and sleep separately too; it’s tricky to completely distance as we are all at home, but are trying to time when we use bathrooms at night and I have my own towel etc. I feel fine but very guilty as my husband is working , having to shop as we can’t get online shop and picking up medication etc too. Found out about Pharmacy2u so that will help with drugs as it’s all done online. Now just need to get food delivery sorted and that may help
Thanks for that loobylou I'm more or less doing the same we sit in different rooms and sleep in separate rooms but the bathroom is most difficult because it's an area you're in and out all day.
I'm ET jak2+ only taking aspirin at the moment and according to MPN voice advice am not as higher risk as yourself being on hydroxyurea but like a lot of other mpners in my group I'm airing on the side of caution and sheilding as the advice from GP s, hemotologist etc is inconsistent with a lot in the same group as me being told to isolate, not go out for a walk and not shop??? Like you my husband is also getting our shopping but as least often as possible. If you don't mind me asking do you go into the garden?
Hi. I just felt I had to answer your question. Of course you can go out in the garden, you should actually. Exercise is good. If you keep social distancing, wear a mask if you need to go out and wash your hands and don't touch your face everything should be o. K. Take care.
Off topic I read a post of yours asking about the risks of taking vitamin D re progression. I was told a couple of years ago I was vitD deficient and have been taking a vitD supplement since. I'm going to speak to my hemotologist but don't want to bother him at the moment . I was just wondering if you asked your heomotologist and what he advised.
Thanks Kelly I take a 1000iu daily so about the same. I'll continue taking it until I speak to the heamotologist as it states on the box it supports the immune system which is a good thing in the current climate. Many thanks for your reply take care.
I'm ET jak2 + on clopidogrel only. I'm also a nurse working on the front line.
I'm taking the advice we were given by MPN voice regarding our low risk level and continuing to work. My employer is aware of my condition and appears to agree that I'm low risk.
I only hope this is the right approach. I love my job and am taking all precautions to stay safe.
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