Are we still allowed to post about Coronovirus? Need for "rescue steroid dose" in long term steroid users

[Jontie]

Not sure if we're still allowed to post about COVID-19 or if we can only post positive things? I read an article I found interesting and wanted to share it.

I think the debate around the pros and cons of steroid use in covid-19 is quite interesting and relevant to us. This article discusses the possible need for a "rescue steroid dose" for long term users of steroids who contract covid-19. I'd be interested in people's thoughts. You have to register on medscape (for free) to read the full article.

medscape.com/viewarticle/92...

(PS I have edited the post to add the comment and link to the article)

[PMRpro Ambassador]

We are trying to get back to normal service - the Covid thread was introduced because the deluge of Covid posts was overwhelming and sometimes the same question asked 4 or 5 times a day. The only caveat now might be that if it is nothing at all to do with PMR we might possibly stop the replies after a while if there were a lot.

[Jontie in reply to PMRpro]

Ok, thanks. Well I'll let you be the judge of the relevance of this article. I think the debate around the pros and cons of steroid use in covid-19 is quite interesting and relevant to us. This article discusses the possible need for a "rescue steroid dose" for long term users of steroids who contract covid-19. I'd be interested in people's thoughts. You have to register on medscape (for free) to read the full article.

medscape.com/viewarticle/92...

Thanks

[PMRpro Ambassador in reply to Jontie]

Very relevant - and so far the only place I have seen any discussion was on the patient.forum where someone had been told by the rheumy that they should not under any circumstances increase their pred dose if they caught Covid19 whereas his longstanding and very experienced GP had told him to double it.

I replied by saying it would depend on the dose anyway because adrenal insufficiency is always a factor but doubling high dose pred might mean poor outcome in Covid 19 so that was something to refer to a medical team if it happened. The guy who had asked the question was on 4.5mg - doubling it still left him at a lowish dose.

[Hidden in reply to Jontie]

I am sure it has crossed people's minds and is causing a little concern. You hope that your medical records are at least checked and treatment is based on maintaining other aspects of health too. But if you are in ICU and critically ill it does make you wonder if the WHO recommendations against use of steroids might impact treatment. No doubt the answer will lay somewhere in all the debate about steroids and covid19.

[Jontie in reply to Hidden]

I guess we have to hope we can avoid it for long enough that there are some definitive answers to these issues. Currently, we are probably as well read as the clinicians who might be treating us if we end up in icu!

[PMRpro Ambassador in reply to Jontie]

Certainly as most GPs - ICU doctors are working internationally with video conferencing to exchange experiences.

[Jontie in reply to PMRpro]

Well that's reassuring. I guess best practice will filter down to GPs eventually.

[Rimmy in reply to Jontie]

Only problem is the 'filtering down' could take TOO long for some and given that many doctors don't seem to understand PMR/GCA anyway very well let alone the 'appropriate' use of corticosteroids - which can also be very different for various people over time - so I don't feel very confident that the 'right' decisions would be made if the 'worst' happened ...

[Pippah45 in reply to PMRpro]

I worry that they don't have the time or energy to study much at all at the moment. The ones interviewed on tv look beyond exhausted Bless them!

[PMRpro Ambassador in reply to Pippah45]

They are - but the consultants do have virtual meetings to gather experience from other countries who are ahead on the curve. And THAT is disseminated to their departments.

[S11m]

I did try to address the problem by applying to start a "Covid-19 and epidemiology" forum - but I did not even get a reply.

[PMRpro Ambassador in reply to S11m]

As far as I can see you have to be an organisation. Are you?

[S11m in reply to PMRpro]

There is space on the form to state if you are an organization - but I did not think it was a requirement.

[PMRpro Ambassador in reply to S11m]

The stuff I found was all aimed at organisations - I might be wrong though. But running a forum by a single person may work inititally but isn't feasible in the long run.

[S11m in reply to PMRpro]

I would ask for volunteer moderators.

[Hidden in reply to S11m]

We had this exact discussion at least a week ago! Deja vu...😕

[Yellowbluebell in reply to S11m]

Good luck with that is all I can say. When this forum was in danger of folding due to having no moderators there wasnt a queue to do the job. People dont want to do à job that's unpaid and doesn't make you popular when you make decisions to enforce the guidelines.YBB

[Jontie in reply to Yellowbluebell]

Hope I haven't opened a can of worms here. I was simply trying to share an article that I found interesting. I did check first that it was ok to post. Thanks for the responses anyway. I feel it is better to be equipped with some degree of knowledge should one end up in hospital. On the other hand, some may prefer the ignorance is bliss/life in their hands approach!

[Yellowbluebell in reply to Jontie]

No problems. You asked and were.told yes but that we would stop replies or delete if it got out of hand. YBB

[Hidden in reply to Jontie]

A really important and relevant post to those of us on pred for weeks, months or years. So no can of worms opened by you. 🌻

[PMRpro Ambassador in reply to Jontie]

Oh no - an excellent article or I wouldn't have said so and left it.

[Rimmy in reply to PMRpro]

There obviously has to be some 'discretion' involved at present regarding discussing the virus and how it impacts so many aspects of our lives. It is in many ways very difficult to peel it away from our 'health' generally so most of us understand this is a complex situation for the moderators. But agree THIS peer reviewed article is very good and at least something we can refer our medicos to if any of us (perish the thought) might contract coronavirus and get really 'sick'. I had been trying to find something - 'anything' discussing the interrelationships with corticosteroids in particular and how we might be impacted - so I really appreciate seeing this !

[Noosat in reply to Jontie]

I don't know where you are, however, I can assure you there are multiple sites such as the CDC and Dr. Fauci from the Infectious Disease Institute who can give you all required information directly from the "horses mouth." I am in the U.S. and when I want to find more about COVID 19, I find many reputable sources for my answers.

[Yellowbluebell]

As this is a pmrgcauk forum it cant happen on here. All we can suggest is you speak to HU.YBB

[Yellowbluebell]

No it's not who is posting but when we were dealing with covid issues on here a decision was made with admin that covid posts had to be on the covid thread and not on the main forum. We are now dealing with covid queries as they arise, as things have calmed down a bit but we may still.stop.replies or.delete covid posts. À specific forum for covid isnt something we can deal with and as pmrpro has said s11m would need to be an organisation to set up a forum.YBB

[Hidden]

I have sent you a pm that may interest you.

[Seraphina56]

Thank you for this. Very relevant. I’ve put it on my home screen on my phone so that if I do need to flash it in front of a physician, I’ve got it handy.

[Pollyanna16]

Hi Josie, after taking pred since 2011 I was diagnosed with Adrenal Insufficiency last June. At the onset of the Virus I began to look into my treatment options if I should get it & it’s been quite a learning curve! Why I wasn’t given this info last year ???? Anyway briefly after 2/3 conversations

with my GP & research on the Addisons/Adrenal society website we concluded that I must double my pred intake when first feeling ill, which would be 10mg. I should have an injection of 100mg Cortisol on hand to self inject. Then call 999. The last conversation I had was that on 1st feeling a little ill I should let the surgery know so they could help me through the decision making process. Need to pack my bag in preparation & have finally been put in Tesco’s priority list .. hurray! This has all been a bit stressful so I’m trying keep busy to take my mind d off it all. Stay well everyone xx

[Constance13 in reply to Pollyanna16]

"Busy" is not in my vocabulary at the moment!😂

[PMRpro Ambassador in reply to Pollyanna16]

Who diagnosed and took management decisions on the secondary Addisons? One lady on the forum had her emergency hydrocortisone pack sent to her before ever having it explained! An endocrinologist MUST be involved surely?

[Pollyanna16 in reply to PMRpro]

Erm .... rheumy referred me to endo last Feb after synacthen test it took so long I saw him privately end of June. He diagnosed adrenal insufficiency almost certainly in pref indefinitely... no mention of emergency pack only doubling pred if have infection, surgery etc. No follow up I assumed due to private consultation. Rheumy saw me in January this year & seeing her again in November after dexa scan🤞 I had to look up the video in how to use the injection & followed it up with a telephone call to GO. As I said it’s been a learning curve!

[PMRpro Ambassador in reply to Pollyanna16]

Yeeeess. Obviously assumes that you are on enough pred for normal purposes and doubling pred will do - but it is still possible to have an adrenal crisis, I know someone who had a couple for no apparent reason while on 10mg pred.

SheffieldJane had a pack sent to her without explanation - not sure what happened in the end. Maybe you should ask her.

[Pollyanna16 in reply to PMRpro]

Oh did she? I will thanks. I should be able to get by on 3.5/4 in normal circumstances but must not go lower. I increased to 5 as have had a sore throat for 3/4 weeks 🙄. It’s hard to imagine that 10 would help in a crisis! Hopefully I will be ok. Thanks xx

[PMRpro Ambassador in reply to Pollyanna16]

In a crisis you may require loads more in a spike - not sure what dose the HC packs are. But that is why we should have a steroid card - and if I were you I would get a medic alert bracelet. You never know when you could be taken ill/have an accident and then you are at risk if the medical team don't know your history.

But if you are unwell and show the signs, 999 is the place to go and tell them it may be an adrenal crisis. They carry all the gear.

[Pollyanna16 in reply to PMRpro]

The pack is 100mg of Hydrocortisone & I have 2 packs. I lost my bracelet & have ordered a new one which should arrive today. Thank you for your concern & I’m sure you are right re. 999. My main challenge has been persuading my hubby to accept our new limitations 🤨 he’s got it at last!