Clarity

[G1DRA]

Are those with ET JAK2 and taking Hydroxy in the At Risk Group?

I seek clarity from the NHS, can any one from the NHS please clarify as there are conflicting replies. My GP and Oncologist have not replied to my question.

[piggie50]

Hi G1DRA,

I am not aware of anyone from the NHS on this site.

As you say, there is conflicting information. Bloodwise says YES, MPN Voice says NO. Some haematologists say yes and some say no. Some of us have had letters and some not! It is all very confusing. For myself, I have not had a letter but I am being very careful. I have not been to the supermarket since last Monday, eating what I have in the house and have been for very short walks most days but if there are too many people about I have come home again. I have registered on the government site that someone kindly posted on here in the hope I am able to get a delivery slot from Sainsbury but I don’t know how long it takes that info to filter to them. So far I haven’t been able to book a slot.

Are you in the U.K.?

Best wishes

Judy

[G1DRA in reply to piggie50]

Yes, Dorset. We too are having difficulty placing online orders. I had to stand outside Boots waiting for my supply of Hydroxy and Aspirin.

I really despair of how we are being ignored as a minority with MPN.

[Ebot in reply to G1DRA]

Have you considered the online service Pharmacy2U for your drugs?

[G1DRA in reply to Ebot]

No, but I will in future. Thank you for the info.

[SuET2017]

Yes, same as Judy. Conflicting information on bloodwise/MPN Voice/government advice. I have also registered on the government web site as I have not received a letter or been contacted at all.

I should be back to work on Monday and have been told I need to be if I don’t have a letter. But I work in a Nursing Home am unable to maintain social distance and am not at all comfortable going in. I Have decided safety over job and I’ll deal with the fall out later. Take care

[mhos61 in reply to SuET2017]

Ditto, no letter.

You are the people I feel really sorry for. It’s hard enough to deal with this crisis without the additional burden of worrying about your work/safety situation. I only work two days a week now, but I have decided if I’m put under any pressure to return I will leave. I’ve only got eighteen months to go until pension age. It’s not just about protecting myself, but my immunosuppressed husband and my elderly Mother.

You have made the right decision, your health is more important.

[Lifam]

As for myself I know I am in the high risk group. I am in HU, have just turned 70 and have asthma. Anyway, high or low risk, I think since we are on cancer medications we need to take extra precautions when out.

[hunter5582]

There is a lot of confusion about this as the real answer is that we really just do not know yet, Theoretically, people with MPNs are no more likely to contract COVID 19 nor be at higher risk if they do contract it than anyone else. Unless your immune system is compromised, your risks are the same as anyone else in your age group. Age over 60 is a known risk factor. Many with MPNs fall into this age group. The is a |"however" attached to this commentary. There is just not enough data about COVID 19 to be certain what we are dealing with in regards to MPNs. I did have a chat with my hematologist about this and he concurs with this summary.

Regarding hydroxyurea, there also seems to be mixed answers. Not everyone responds the same to it. Not everyone is on the same dose. HU is known to compromise immune response in some, so it might put you at increased risk. Some meds, like ruxolitinib, are in the definite increased risk category. Theoretically, the risk with HU could be that it decreases hematopoiesis - suppressing the production of leukocytes when your body needs to be producing more to combat an infection. That is just hypothesis. I do not think anyone really knows for sure yet.

Unfortunately the only way the data is going to be created is when more people with MPNs contract COVID 19 and we see how they react to it. Likewise with the various meds we take. While we need to know, I would just as soon we never had enough cases to actually gather this data. Unfortunately, I expect that over the next few months we will find out.

Hoping none of you become sources of this data. Be careful and stay well!

[Tomaj]

I would like clarification too. I filled in a risk assessment at work stating I have ET and a reduced immunity because I am on Hydroxy. They asked me if I received a letter stating I was in the at risk category and I said no. They agreed that I should work from home when I said my other half was a nurse dealing with Covid-19 patients. The outlook does not look good. I am unsafe both inside and outside my house, but the rest if the country is safer if I stay inside.

[Klys]

No letter yet, I am ET jak2 POS and asthmatic... I cannot register on gov.uk as I live in Scotland , no delivery slots and prob won’t get any as I can’t register...husband is 78 stroke and I am his full time carer too... so I have to go out shopping. We have no family to help. How can this be we cannot register because we don’t live in England. Here is nothing about this in gov.scotland...