Coronavirus (COVID19) - ADVICE FROM THE MEDICAL TEAM

[Mazcd]

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.

[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 Partner MPNVoice in reply to MarkD6701]

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 in reply to Mazcd]

Thanks Maz

[Inca in reply to Mazcd]

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]

Thanks Maz...

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

Steve

[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]

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]

Thanks Maz.

[Hidden]

Thanks very useful

[azaelea]

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

[Poppy6060]

Thanks Maz

[Aquinas]

Much appreciated, Max.

[Carolyn77]

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

[westlieght]

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

[ksos]

Thanks, Maz! Very helpful

[MPNBlog]

Thanks for responding Maz to help alleviate our collective concerns.

[Lifam]

Thank you. Advices much appreciated.

[Lorrmac]

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

[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 in reply to champ30]

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 in reply to piggie50]

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]

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

[Threelions]

Thanks, very reassuring x

[krotsida]

Very helpful, thank you so very much. Anastasia.

[MaggieMagpie49]

Thanks Maz, it's such a worrying time Maggie

[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]

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 Partner MPNVoice in reply to Pkm52]

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]

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

Judy xx

[Mazcd Partner MPNVoice in reply to piggie50]

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