Please look at the NHS website for the latest information and follow updates on the news and television. Advice is currently changing frequently so please make sure you are up to date (check daily).
The government’s general advice may be found here:
We will try to summarise some relevant information
1.Patients with a myeloproliferative neoplasm (ET, PV or myelofibrosis) who are on aspirin alone, blood thinning tablets (like warfarin, apixaban or rivaroxaban), venesection alone or no treatment at all only need to follow the government’s general advice (see link above) and are not considered high risk.
2.Patients over the age of 70 with a MPN, or any MPN patient with additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable and should follow the government’s guidelines for vulnerable individuals (see link above).
3.Patients under 70 years of age who are on medications to control their blood count or their MPN like Hydroxycarbamide, Interferon, Anagrelide, Busulfan and combinations are in a group where the situation is unclear and there is no clear evidence that they are high risk. But they should at the very least follow the government’s general guidance.
4. Patients taking ruxolitinib regardless of their diagnosis may be at higher risk and are considered to be potentially more vulnerable. These patients should follow government advice for vulnerable individuals.
In addition
6. All patients should continue with their current medication because keeping good control of your MPN is an important priority.
7. While there have been some concerns that ibuprofen or similar drugs may make COVID-19 worse, there is no current suspicion that this is the case for aspirin.
Please note that this represents the collective opinions of MPN clinicians; MPN is not a simple Blood Cancer. The situation may change rapidly please check for updates and if you are not certain discuss with your clinical team but bear in mind the pressures that they will be under.
Written by
Mazcd
Partner
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Hello Maz, Thank you so much to you and all the clinicians who have put together this information. I, like others, have been feeling anxious about this, but now I feel well informed.
Thank you Maz for this very specific advice. It's very reassuring. Great . I'm in the unclear category so am assuming my risk is no greater than a well person unless I hear otherwise. Darn , I was enjoying let my husband do the shopping . Kind regards, Carolyn.
Hi Carolyn77, I'm in the unclear group too but my husband is really protective so he insists on still doing the shopping! I'm just relieved that I can still go out for a walk (while backing away from everyone I pass!)
Thanks for the update and all of your efforts Maz. It's reassuring to be able to get information that focuses on our specific concerns and needs. For what it's worth I am in the unclear category. Best wishes to all in our group.
Hello there, I was interested in your reply, I work in a school. Our school closed today but will be open on Monday again for vulnerable children and children whose parents are in certain professions. I have ET and take Hydroxycarbamide, I have had the disease for 20 years and struggle with fatigue. Although it is stated we are not at high risk I am worried about being in a situation where I am exposed to catching the virus. I would be interested in hearing about your situation. Take care😊
Hi, my head teacher sent me home just incase I was at risk. I’ve rang the secretary at my hospital and she said, it was up to me what ever I do.
But I’m still confused about having E.T and MF, being on Hydroxy Anagrelide and aspirin. I also have fatigue and I have anemia.
But I’ve tried to get in touch with different people, which I understand people are very busy, as it states we are not at high risk if you just take one or no medication but I take 3 lots.
These are dreadfully worrying times and like others I am very grateful for the advice you are able to give us and the support of everyone on this site.
In such circumstances to be able to hear other people’s thoughts who understood our situation is so reassuring
Thanks so much for the info Maz - I’m on rux so it’s pretty clear advice - I’ve lots of solitary gardening to get on with! Keep well and safe all Anna x
Thanks mazcd this has cleared some of the confusion up. Apparently those in the at risk groups will also be notified from monday onwards. Any idea who is sending this out GP or hospital?
Asked our GP receptionist yesterday when calling re my daughter's inhaler, and she thought it must be the specialists writing to at risk patients, as she'd not heard anything about it.
Thank you for the information. I'm relieved to know I'm not in the at risk group as, since Tues, we are isolation as a family since my husband developed fever & cough since being exposed to a patient who in hospital with his 89 yo father; the patient has since been admitted to bother hospital and swabbed for covid19.
It's unexpectedly challenging to isolate within a family, as well as from the outside world, but I've been touched by the generosity of friends who have dropped food supplies & resources from school in our porch.
Symptoms are trailing off quickly and my 9yo daughter and I are completely well so far. Who knows if it was the virus or not with presentation being so widely varied.
Keep doing things for your well being as it's anxious time for all, especially those little ones, elderly and unwell.
Thanks for clear and calm guidance! I have been put in the high risk group by consultant as on Peg and always have low neuts - she said just go with each instruction as they update - have been isolating and working from home a couple of weeks anyway and bar walking/marching with the dog (😹🐾) on empty roads am home with a huge amount of kind friends dropping bits of on doorstep. Kindness gets us thro this challenging time - and you Maz are always kind in all you provide for us via MPN Voice. Thank you and please take good care and stay safe - Jill x
I live in Guernsey C.I and we have no MPN doctors on the island, so rely on visits from The Heart Of England docs to come over to monitor our conditions, their trip over to the islands has now been cancelled as we are all in quarantine. I have been told I should still gets my bloods done and somehow we will be monitored !! I am wondering as to how they are going to do this. I am on Hydroxy and various other meds . For the first time in 5 years I am getting worried.
I spoke to my GP today and she said that my 4-month Watch and Wait haematology appointment and preceding blood test on 7 May are likely to be cancelled. I wouldn't be surprised but at the same time don't really see that happening. Do you think we are likely to be pushed aside due to the coronavirus?
Hi Maz,on the latest news with regard to the Coronavirus, letters are being sent out about a 12week isolation for those with some health conditions. I have PV and taking hydrea, are we included in those letters? I work as a carer and becoming anxious about the situation, but also about the possibility of no money coming in.
HI Maz on a Speech from Nicola Sturgeon she has said any one with cancer of blood/bone marrow and has a rare disease will be getting letters from health Authority telling patients precautions to take and now isolation will be increased to 15 weeks no going out so in house mum had a hospital appt cancelled she will be 80 this year and a bowel that does not work dad with pv also 80 this year seizures and dementia and then me got my dietician appt cancelled but wanted my weight 2lb down on hospital they are going to phone me Wed for weight update have ibs and my et we have to have no contact with gP surgery whatsoever so that is the state off affairs in Scotland as off teatime tonight so will see about how long it is before we get letters from NHS Scotland also still on hu
the reason why have not contacted GP is that they are not run by NHS it is Barclay's medical practice they are not seeing patients in person also we have been told to keep away from the surgery only taking general inquiries and nothing to do with covid19 only way to get repeat prescriptions is to sign up to practice online prescriptions order prescriptions online
best wishes Scottish Terrier
ps general enquiries is phone advice by a clinician
it is very important that the person who is extremely vulnerable who is shielding follows the measures to shield themselves, you should consider all other arrangements for yourself e.g. living arrangements, to enable them to. You must both follow the guidance issued by the NHS and the Government
Have MF and take ruxolitinib and a trial drug from Christie. Was admitted to hospital last Weds with shortness of breath after walking 15m, not me, and when I got there a markedly raised temp. Knew I was getting near needing a transfusion and expected my Hb to be in the 50's. I can do 6 mile walks with Hb of 61 on the flat. I am stubborn and have always been active.
I was dealt with very professionally and after being given 3 units of blood, pre trans fusion actual Hb was 61, and iv antibiotics was discharged the day after as good as new with a diagnosis of pneumonia. CXR was distinctly whispy in that area. Hated being pushed around the hospital in a wheelchair by a nurse with another carrying my suitcase. Maybe I am a old fashioned gentleman, a male chauvanisit pig or just independent and proud, I have 2 daughters and believe they can and should do whatever they are capable of. Was Covid negative after 2 swabs.
Also 2 days before had got cellulitis in my hand from hand washing due to my skin being so fragile from hand washing. Protect the bony areas over your knuckles.
Interestingly I had an e-mail from my doctor at Christie wanting me to keep taking ruxolitinib to prevent a cytokine storm on stopping it, my local consultant advised me to stop it. Not related to anything other than cellulitis. My local consultant admits he is not a specialist and I respect him with my life but having been a doctor I know he respects my decisions
Cytokines are implicated in the development of sepsis, an over reaction of our immune system to infection thus reducing them is advantageous at present.
I was told ruxolitinib is being looked at as a drug that can prevent Corvid 19 becoming an on over whelming infection.
This is just a personal view but if you are taking ruxolitinib and get ill you may have to take a choice between remaining on ruxolitinib which suppressess your immune system and gamble it will reduce the severity of disease which will be significant.
We on this forum will be at the bottom of the 7 categories for access to ventilators that's not to scare you its just fact and I am glad I am no longer a doctor making those decisions as they are going to be scarred for life. They have no choice but to make those decisions and if you are religious pray for them because they will have to deal with torment, the what if question, I am glad it is not me.
I was in practice through the last 2 pandemics, swine flu and bird flu. None of these bothered me, this one does. The recommended social distance is 2 meters, that is for health people, we are told to not leave our houses. I would suggest you try for at least 5m if you leave the house. Here is the maths. The area around you is 2pie r squareed. That means a 2 metre distance is 4pie that is just over 7 square metres . If you stay 5 metres away the calculation is 5pie r squared equals 45 square metres thus you are a lot furthur away from anyone and 2.5 times the distant from an individual you encounter. The viral load if you encounter someone who is infected is thus reduced by a factor of 5 assuming a cough from them covers 180 degrees in front of them . If you are behind them you are much better.
may encounter This is complex but is actually basic maths. Please only use this this if you can exercise near you home if you have the ability to aviod people.
If you can influence the resulting enquiry when this is over , globalisation of drug, food etc production has been exposed as a cheap solution to problems that have never been been considered. We have to bring basic drug production, PPE equipment etc everything to do with epidemics back to this country as our security depends on it. Witness the obscurity China put on the emergence of this drug despite the huge WHO surveillance in that area and countries banning the export of basic drugs.
This will not be the last pandemic we have to deal with just the latest extending back to the black death but our knowledge of virology and bacteriology is so much advanced since the village of Eyam made a huge sacrifice to protect their neighbours.
Mazcd, research magnesium and stroke and blood clots. Go to “krispin manesium” and also “mgwater” for more info on form and amounts of magnesium. Plus you can put a pound of Epsom salts in your tub and soak 20 minutes as Epsom salt is also magnesium. Boron increases magnesium absorption so you can also search on nothing boring about boron. As you’ll learn from krispin stress causes magnesium loss. Magnesium also prevents platelets from sticking together. Observe cautions about magnesium. Vitamin C is another to investigate for your concerns as it strengthens skin and blood vessels. Liposomal C is excellent for your needs .
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Guidance from MPN specialist needed please, on whether to have Astra-Zeneca 2nd dose.
