Coronavirus (COVID19) - ADVICE FROM THE MEDICA... - MPN Voice

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Coronavirus (COVID19) - ADVICE FROM THE MEDICAL TEAM

Mazcd profile image
MazcdPartnerMPNVoice
30 Replies

Everyone should follow standard NHS advice

this link will redirect you to the NHS advice page: nhs.uk/conditions/coronavir...

Further advice can also be found on the Gov.UK website, this link will redirect you: gov.uk/guidance/coronavirus...

We do see a small increase of minor infections in patients with MPN but severe infections are rare. We do not suspect that this will be different with COVID 19. Probably the bigger risk would be for patients taking ruxolitinib, this is because Ruxolitinib is a slightly more powerful immunosuppressing drug, but overall it improves patients' fitness which is important to bear in mind.

However we would urge patients not to stop taking their medication and to ensure they have plenty of supply.

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Mazcd
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30 Replies
MarkD6701 profile image
MarkD6701

Hi Maz,

Out of interest, what effect would ruxolitinib have? Obviously Hydroxycarbamide can leave you a bit exposed with lower blood counts. Would ruxolitinib do the same?

Regards

Mark

Mazcd profile image
MazcdPartnerMPNVoice in reply toMarkD6701

HI Mark, the answer is:

Ruxolitinib is a slightly more powerful immunosuppressing drug, but overall it improves patients fitness which is important to bear in mind.

MarkD6701 profile image
MarkD6701 in reply toMazcd

Thanks Maz

Inca profile image
Inca in reply toMazcd

Hello Maz,you must be overhead in everyone's worries.I did panic a bit about the Rux .....you are right it does help the energy to do things,helping overall fitness.....still hit the fatigue wall tho!

You keep well too,Very Best Wishes and many thanks for your reassurance. Sally

socrates_8 profile image
socrates_8

Thanks Maz...

All great 'uncommon - common-sense' advice for all of us to employ...

Steve 8-)

Jlah profile image
Jlah

Thanks Maz. Welcome advice and timely. I must admit to being worried and grateful others have asked the question. Has put my mind slightly at rest. Jacquie

Smf1003 profile image
Smf1003

Hi Maz,

Like others it has been a concern but I saw my GP about ten days ago for a routine visit and asked him. He told me I was no more in danger than from getting a cold or flu.

We were going to Japan but our holiday has been cancelled by the tour company.

Good sensible advise, if more advise like this was given the panic wouldn't be as high.

Steve

Cassie11 profile image
Cassie11

Thanks Maz.

Thanks very useful

azaelea profile image
azaelea

Thanks so much Maz! Like most of us I admit to some concern. This has helped a lot. Fran

Poppy6060 profile image
Poppy6060

Thanks Maz

Aquinas profile image
Aquinas

Much appreciated, Max.

Carolyn77 profile image
Carolyn77

Thank you for this reassuring advice Maz. Great. Kind regards carolyn.

westlieght profile image
westlieght

Hi Maz Maggie from north Devon at mo no cases reported ! Thanks for keeping use informed

ksos profile image
ksos

Thanks, Maz! Very helpful

MPNBlog profile image
MPNBlog

Thanks for responding Maz to help alleviate our collective concerns.

Lifam profile image
Lifam

Thank you. Advices much appreciated.

Lorrmac profile image
Lorrmac

Thanks Maz, that’s most helpful. Going to take my trip to Paris and just take NHS advice.

champ30 profile image
champ30

Hi Maz,I am due to see Dr.Veale next week and always have blood test the day before at my surgery.

I shall ring his secretary when blood s are back from lab and see whether he wants to see me or not.Whatever, he has to write a prescription for Lenalidamide,so a trip to hospital will be necessary.

I have an excellent relationship with him and he is sympathetic as I also have MDS and Bronchiectasis,this being my biggest worry being a respiratory condition.

The problem with Lenalidamide,which is my medication drives the neutrophils down,quite often barely high enough to continue the medication.

Having said all that I'm really doing what I have been told to do upon diagnosis which is mainly being vigilant with hand care and avoid crowded areas if possible and anyone with infection.

The Lenalidamide works well for me regarding RBC and am doing well (on the plus side!,)

Keep smiling all, but be vigilant, that's all we can do.

Regards Lyn

piggie50 profile image
piggie50 in reply tochamp30

Hi Lyn,

We have spoken before on the forum. I am in Exeter too and have telephone consultations with Dr Veale or one of his team. I also go to hospital to collect prescriptions. It works for me but but I just have PV and RA not like your complex issues. I hope you keep well during these times. Maybe when it’s all over, in the lovely summer months, we can arrange to meet for a coffee. Sandy is happy to come up from Torquay.

If you need someone to go and collect your prescriptions from the hospital I am happy to do this for you.

Very best wishes

Judy

champ30 profile image
champ30 in reply topiggie50

Hi Judy,

Thanks for your reply.Lovely to hear from you.

I'm in a worrying state at the moment as I have a flare up of my bronchiectasis (coughing up a lot of blood and more so than usual)

Have been in touch with nurse to Dr,Withers(respitory doctor) as am finding my condition very worrying and the fact I'm trying to avoid the hospital.

I know I will get through it all in time.

Would really love to meet up with you both when this whole thing dies down.

Love Lyndax

mark382 profile image
mark382

Thanks Maz. Always trustworthy information from someone who understands our conditions.

Threelions profile image
Threelions

Thanks, very reassuring x

krotsida profile image
krotsida

Very helpful, thank you so very much. Anastasia.

MaggieMagpie49 profile image
MaggieMagpie49

Thanks Maz, it's such a worrying time Maggie

Aime profile image
Aime

Thank you Maz, so important to get such accurate and trustworthy information. I think the press tend to make it sound an awful lot worse than it actually is. Kindest regards Aime xx😻😻

Pkm52 profile image
Pkm52

Thanks again Maz. I mention your name when I share your wisdom with family. Just think, you are being mentioned in the Western corner of the USA. Also just one name like Sting or Madonna!

Mazcd profile image
MazcdPartnerMPNVoice in reply toPkm52

Oh that's lovely, thank you, that has made my day, in fact, my whole week, I have a huge smile on my face. x x

piggie50 profile image
piggie50

There you go Maz, love it! you even have the rock star hair to go with your rock star name. 🤣

Judy xx

Mazcd profile image
MazcdPartnerMPNVoice in reply topiggie50

I do indeed Judy, I think I shall channel my inner rock star today and refuse to make any more cups of tea, as I am too famous!!! Not sure if I will actually get away with it, but worth a try. Maz x x

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