Does this apply to people with MPN (who are under 70)?
Would it be possible to get some specialist medical guidance on this matter?
Thanks!
12 weeks isolation: Does this apply to people with... - MPN Voice
12 weeks isolation
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intothewoods
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I would also like some guidance, I’m over 60, and work in a school!
My understanding is that there will be an announcement on Tuesday about those under 70 but with a serious medical condition.
I doubt MPN will get a specific mention but there might be something about those who are significantly immunocompromised.
I feel quite uncertain about what to do now. I hadn't considered the need to self isolate until the most recent advice was issued today. I'm 28 and have ET, discovered after a period of time in hospital with Budd Chiari Syndrome (blood clots in the liver). I take interferon alpha and warfarin and am not sure whether you would class interferon alpha as an immunosuppressive? Hoping for some more details/ guidance in the next few days.
Take care everyone, particularly with your mental health x
I've never seen anyone with the exact same condition as me, I'm 27 and had Budd Chiari now living with ET. I also was on Interferon Alpha but I would suggest you try seeing if you can get put onto Eliquis Apixaban instead of Warfarin as that's a very old drug that fluctuates significantly with diet from what I've been told. Just something to think about.
I asked my consultant last Monday (Prof. Claire Harrison) what sort of risk I was at with this and she said that given my age and the fact that the medication reduces platelets and my white blood cell count is good I'm not at high risk. It may still be worth you asking them directly if you're concerned though.
All the best Budd...(sorry I couldn't help it)
I have polycythaemia and budd chiari!! Xxx
Hello, and sorry for the very slow reply - I'm not on here that often so have only just seen your message.
That's amazing to know of someone with the exact same condition! I've never come across someone either, I like to think of us as pretty unique! Thanks for the advise on Eliquis Apixaban, my GP recently suggested speaking to my consultant about changing to a NOAC rather than Warfarin so it's timely advise. I'm thinking of maybe changing my consultant because of various issues I'm having so hopefully I might be able to get onto it at some point.
Hope you're keeping well during this strange time!
Bea
There is no way I can isolate for 12 weeks because I'm a staff nurse looking after the sick in hospital 😷😷🤢🤢🤧🤧
I applaud all our medical personal as they, and others, are on the front lines of this. Some, like you, deal with sickness and family issues and I thank them for what they do. Keep safe
Yes it’s really tricky. My partner’s Haem said interferon/peg affects the immune system he should consider himself ‘vulnerable’, however I’ve also heard that interferon is used as an antiviral and was used to fight SARs etc...hope we get clarity tomorrow. Not sure if to take our son out of nursery....
I was scheduled to start PEG this month but I decided to hold off. But then I read that it could help with the viral load. Not sure what is the right answer.
If you are symptomati, self isolation is recommended. Would you want to compromise an already critical situation.
No trainer.
Government guidelines issued yesterday says that those in the serious underlying health issues will be contacted by their GP next week for bespoke guidance. This is classed as a higher risk than the vulnerable groups which are classed as those who are offered a flu jab each year. It doesn't say you have to completely isolate just that they advise working from home & reducing social contact if you can. So there is no blanket guidance and probably at the minute do as you feel best for yourself, can you take holiday from work. Employers will only be able to claim 2 weeks of ssp for self isolating so if you are off for longer you may not be paid. Unfortunately we all have bills to pay. I run a business, we can't work from home, thankfully I have a small team who do work apart from each other so to keep the distance we will stagger everyones break & keep 6feet distance. But I'd love to send everyone home but how long for? I then wouldn't have money coming in to pay them if it goes on for long. I have to react, if my customers shut then we might but I'm giving the option to book annual leave.
I do hope that the British government stops dreaming and follows the example of the rest of the world. They must also offer financial help to businesses and employees the same to get through these crazy times. All cancer patients, especially those with blood cancer are high risk if they contract the virus. Please taken all precautions! The 6ft rule is probably the most important. We are all at home in Austria except for health professionals and supermarket staff.
Stay healthy!!
My consultant informed me that taking hydroxycarbamide was the key as this represses the immunity and places me in the at risk category. The UK government do specifically name blood cancers.
Does this include those just on Aspirin?
No
Just read on gov.uk 'anyone with blood cancer at any stage of treatment'. I also have controlled high bp and have a free flu jab. I am 68.
Thank you. I take hydroxi but my WBC is good. As m I high risk?
It's the hydroxy that causes some risks for immunity - mine too are good but I was told to consider myself as at risk so I am taking extra care. I was also told that for work purposes I was to say I am in the higher risk category so should treat myself as such. Clearly, there are different degrees of risk and with good WBC we are probably in a better position than others but should I think not put ourselves at risk as this could change quickly if we became infected. This is only my opinion. Take care.
My consultant told me i'm really only more at risk when my white counts go too low because of the hydrea. This as happened quite a few times,then they normally keep me off the hydrea for a week but that in turn normally bounces my platelets up which leaves me at more risk of another stroke. Recent counts only slightly out so no worries. Atb,tina.🤗
I'm a supply teacher, and not taking any chances. I will isolate until I think it's safe enough.
Looking at MPN voice the do say it’s unlikely having an MPN will make us more at risk to Covid-19 than other major infections but I guess being on Hydroxy or Ruxolitinib is a risk.
mpnvoice.org.uk/about-us/ne...
I’m going to follow advice but I don’t class myself as at risk as people with full lukemia or others on much stronger meds. My wife is diabetic type one and my kids have asthma and I feel they are much more at risk than me so I’ll go do shopping etc if it comes to lock down. I am quite young still (41) so would be in a lower group for age risk.
For me none of this is clear enough. I have ET Jak2 positive only taking low dose aspirin. I'm currently dragging myself in to work with horrendous headaches and fatigue. I work full time and have a 4 year old in school.
I need to approach my manager if I am to work from home but I don't think it's clear. Believe me, my boss would have me sleeping at work working 24 hours a day if he could get away with it.
Lyndsay
lhammy66 in reply to
That sounds rough - very difficult to handle. 
tifftriesit in reply to
I Have PV JAK 2+ and I feel like you do. I’m only 41, but I am going to stop working bc I just cannot do it anymore. The fatigue is consuming. I’m a teacher and have two kids, and my body just can’t handle all of it. I look fine from the outside though as EVERYONE tells me. Then I come home and sleep until morning.
I’m sorry that you feel the same.
I think that was obvious yesterday people on immune suppressants chemotherapy
Hydroxycarbamide is just that people with high blood pressure heart problems all at high risk
I guess it’s a very fast moving situation and we will get more official info over the next couple of days.
My hunch is that some/all of us will be included. For 3 reasons:
Prof Witty in the news conference yesterday, suggested that anyone who was advised to get the flu jab falls into this category. This was one of my haematologist’s explicit instructions when I commenced my Pegasys treatment.
Pegasys is classed as immunotherapy. Again when I was starting treatment I was warned to avoid people with flu and other illnesses as I could be more susceptible.
MPNs are blood cancers.
All only my interpretation, let’s see what the experts say later?
Stay well All.
Warm wishes,
Lou xx
According to Bloodwise, yes we should be self-isolating for 12 weeks...
According to the new government advice, it specifically states 'blood cancer', and then also 'leukemia' in the same sentence. 12 weeks isolation and we will be phoned by the nhs to be instructed further, as we will need to take further measures than the advice given to the general higher risk groups.
Stay safe everyone, we have a blood cancer, if you decide to take risks, do so in a fully informed way.
Im staying in, and waiting as I suspect we might get some more clarity later today, either directly aimed at us on here, or via the news/nhs
Our Haemo's class it as blood cancer, well some! Most Gps still in the dark. Will be interesting to see if anyone on this forum gets a call. Atb, tina.🤗
I have been 2 one Hematologist asking where did I hear that this was cancer. I have had other people say the same thing. To me, at that time, I really could care a less if it was a cancer I just know it affects me greatly. I thought the only way it would affect me is possibly for some insurance purposes. The longer I am on this MPN journey I think the more it's not classified one way or the other generally discredits the people who do have it and to some maybe even in ways we don't even know of yet!
That's awful if a haematologist is so ignorant. Get him/her to talk to the Guys hospital team. A quick google would answer this too. It's not that hard to find reliable info....
My oncologist said the same thing to me about it not being cancer. He said it like 3 times that it is not cancer. The bone marrow and blood doesn’t contain cancer cells with PV Jak2. Abnormal cells are classified as cancer but I don’t believe that PV is a cancer like my doctor said. 👍🏻
The JAK 2 gene has mutated for a lot of us and is over producing blood cells - such mutation and over production are counted as a cancer. However in the past this condition was not classed as such but as knowledge has grown it is now labelled a cancer. If you look it up on any reputable web site this will be confirmed. It's a rare ish condition which is why some are ignorant if this.
Remember that the 12 week thing is social distancing rather than self isolation. Self isolation is for those with symptoms and would be for up to 14 days. Social distancing is less rigid - you can go out but keep away from other people, pubs, theatres etc. At the moment I am being extremely cautious but hope for some clarity when I have seen my consultant next week.
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