A rheumatologist's comment regarding PMR/GCA patients on pred

[PMRpro]

There have been repeated queries about how being on pred fits into the "at risk" category - this is one top rheumatologist's opinion and I imagine that is what she emailed me this morning to say that she is telling her patients:

"I am very concerned for my patients on 20mg pred or more. I think they should all without exception fall into “stay at home 12 weeks” category. Some of them have trouble accepting this.

I also have significant concern for anyone on over 5mg Pred. I personally think that’s as least as risky as being on a DMARD and so should also “stay at home 12 weeks”.

NHS patients on long term steroids (5mg pred or more) should all carry the new steroid card in case they become suddenly ill. Print off from this website. endocrinology.org/media/356...

I know it is a bit scary - but you need to know and you need to take notice. Reacting to this virus isn't a game - it is deadly serious. Staying at home for a few months, not even being in the same room as your extended family, may well be the thing that will mean you have many years more of enjoying them.

We are in the 21st century, everyone who reads this forum is, by definition, able to use the internet. If you don't already have Skype or Facebook, whatever you think of them, sign up. Facebook in particular is excellent for keeping in touch with the younger generation because most of them use it. My daughters, my brother and his two children, some of my cousins, all use FB and I am better able to keep in touch with all of them than ever before.

PS - they are urgently seeking an opinion from Public Health England.

[Enfin]

Thank you , that is very clear and helpful

[Blearyeyed]

Thanks Pro , that tells us nice and simply doesn't it.

I would also personally suggest that people who are on doses under 5 mg , but are having moderate / severe symptoms of Adrenal Insufficiency also consider their age , and current state of Health, and use greater Social Distancing , and, in severe cases , when you are suffering from Deathly Fatigue , Recurrent Temperature and BP swings , and Heightened Anxiety or Tiredness that you also choose Social Isolation ( or at least only essential trips from your Home for Food and Medical Care).

People suffering with Adrenal issues and inefficient Adrenal Function can find it harder to react to any infection too , and their body processes are less able to react quickly to cope with what it needs to do to recover from Disease or Injury , of any sort . Taking the more rigorous steps of trying to prevent infection with Covid 19 or a Flu at this time , especially in an older age group , or if you have other Chronic Health Issues which may not be high on the at risk Disease list, seems like a sensible choice to me too.

Maintaining good General Health and trying to reduce your Stress with various Breathing and Mental exercises will also help everybody , even while at Home , during this Outbreak. Everybody can help themselves by trying to keep in the best condition possible to be able to cope or recover from an illness if it develops.

Keep Proactive , Keep Positive , Keep Aware but Stay Happy xxx

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TBF..I think we have been saying self isolate/social distance...

[Hidden]

Nice to finally have it confirmed.... It's confirming the general feeling of you mods for past few weeks. 👍

[PMRpro Ambassador]

So did China and Italy try to warn about other matters - and they have been and are being ignored. I have the rolling news on so I hear the briefings for myself - and the Chief Scientist and Chief Medical Officer are STILL saying things from theory that we know from bitter experience here... Like younger people: they are having to ventilate young, previously healthy patients in their 40s and 50s.

Someone on another thread has said her pharmacist told her under 20mg was not high risk - which hardly tallies.

[FnF36]

Just to echo what has been said, I have GCA and have been on 30mg Prednisolone for a month (previously 60mg, 50mg, 40mg since November). This week I have reduced to 25mg for at least a month. Without any prompting from me, my Rheumy and GP have separately said I am at high risk and should consider 12 weeks at home a minimum. No argument from me!

Many thanks for the Steroid Card link.

[DorsetLady PMRGCAuk volunteer]

Facebook is also very good for local group - our village, like most in UK has its own page - lots of information and offers of help. You can just “follow” the group, but also get involved.

Also get signed up to online medical sites - although most surgeries have stopped online appointment booking - you can still order medication - saves one unnecessary visit to surgery.

[yogabonnie]

Thank you. very clear and I think very important. I am grateful to be lower because my husband is at risk. BUT we are staying PUT. not seeing grandchildren. or children or friends. I am walking with one woman (who is also staying put alone in her house) 6 feet apart. ! Time to be as healthy as can be. After my 2 weeks of doomsday eating as I said before I have changed. I am doing easy stretching first thing, eating a healthy breakfast, walking as much as I can, taking a Nap!! cleaning out the drawers reading books studying swedish watching netflix and trying to stay up beat. I send love and healthy energy to us ALL. and once again. here is a yoga stretch and relax.. tracks you can load that I made for my high school students in the health and stress management classes and for my yoga student. there is NO copyright problem. SHARE it. sites.google.com/a/apps.hop...

[Rache]

Thanks so much for this. I have been following these guidelines but felt unsure. I’m on 10mg pred so now I know! Hope you’re managing to stay safe yourself x

[Rose54]

Hi

Not staying in the same room as extended family

How are people manging with Partners who live with them ?

My Son lives with me and as soon as restaurants close he will be at home 24x7.

We have things in place to keep me safe and he is over the top with Hygiene but I know he would go mad staying in his bedroom 24 hours a day .

He went shopping for me yesterday everything was wiped before being put away and bags put out in the conservatory to get sun on them with strict instructions to me not to touch.

[IdasMum]

Can I share this on FB?

[PMRpro Ambassador in reply to IdasMum]

Don't see why not - no names should be fine

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Bump...for info

[saunders123]

Thank you PMRpro for your help and guidance once again.