Virus v prednisilone. : Friend has sent me a media... - PMRGCAuk

PMRGCAuk
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Virus v prednisilone.

suzmum
suzmum

Friend has sent me a media (think it might be from Facebook) stating anyone on steroids should stop taking them immediately. !! Cannot believe this is correct but worry some people will.

23 Replies
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Poopadoopy
PoopadoopyModerator

Hi suzmum, no one on long term steroids should stop prednisolone. Firstly do you have PMR or GCA or are you just wanting info re pred? What dose are you on, for what and how long. NO ONE on pred long term, over @3 to 4 weeks to forever should ever stop taking it suddenly. Please seek medical advice for any change in medications. 🌻

suzmum
suzmum
in reply to Poopadoopy

Thanks poopadoopy, I have PMR, have been on Pred for 12 years, on 15mgs just now. Had got down to 3 mgs late last year but had massive flare so back up again, starting half mg reduction end off this month. Have no intention of stopping but worry some might believe it . Don't do much social media because of the nonsense that's on it.

Poopadoopy
PoopadoopyModerator
in reply to suzmum

Yes. The myths that grow up. Heron is probably right. The fact that steroids did not help the lungs in China for otherwise healthy patients has grown into don't take pred! There's lots of info in the pinned posts regard daily chats about covid. We do try and follow the best science, but there are different things about social distancing and isolation in different countries. Sorry you are flaring, it must be disappointing but as long as pain and stiffness are better. Stay safe. 🌻

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to suzmum

No nonsense on here- just good advice - so stick with us!

suzmum
suzmum
in reply to DorsetLady

Will do, although I like the nonsense on here too

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to suzmum

Yes but it’s sensible nonsense 🤣😂🤣

There is always bad (as well as good) advice careening around the media including social media. I suspect this comes from a misinterpretation of an early finding which was that the use of anti-inflammatories is not helpful in treating covid-19. In some countries prednisone is used as a short term anti-inflammatory and it is this use which is discouraged. If you are on long term use of pred to treat an existing condition then you are wise to be wary of the statement your friend sent you and want to warn others not to trust it. Hope you are doing well?

This is directed at asthma patients but applies to anyone on lomg term steroid medication:

medscape.com/viewarticle/92...

suzmum
suzmum
in reply to HeronNS

Thank you Heron, thought it might have to do with the anti inflammatory side of things but would certainly not come off immediately and have told the friend who sent me it not to spread it around.

Get sensible advice on this site for which I am very grateful.

To stop Pred suddenly can be life threatening, unless it is a very short course like a week or two. Any stoppage would need to be made under medical supervision and a replacement steroid added in.

I think this may have been based on fake news.

I am sure she's a lovely friend but this sort of advice kills people.

Get her to actually do a bit of research into the facts before spreading medical things like that.

Stopping your steroids abruptly if you have been on them long term can cause a trip to A and E .

PMRpro
PMRproModerator

Out of interest - where on FB? Do you know? And your friend should report it as fake news and dangerous advice if she can. Unfortunately there are people out there who will do it without thinking to get medical advice.

It is not correct.

Please stop getting news and information from Facebook, unless it's a friend sending a selfie.

Recommendations regarding medication need to come from your medical team.

My friend has myasthenia gravis and on steroids, 20mgm daily. Her consultant wants her down to 10mgm within 3 weeks. I think this may be more to do with the thymectomy or the myasthenia, not sure where that leaves us.

HeronNS
HeronNS
in reply to 123mossie

With some diseases you need what you need and the best course of action is to self-isolate so you reduce your chances of catching covid-19 (or any other contagious disease). The latest information I've heard is that immunosuppressants really do reduce the body's ability to fight off the covid-19 virus so that may why your friend's doctor wants her to try to reduce her dose so quickly. What is relevant for one patient may have no bearing whatsoever on another, however, especially when you are also discussing different diseases.

For example, if I were on a dose of 20 mg pred for PMR (luckily I'm not, much lower now) I probably would try to reduce that steroid load as much as I could in the present climate. If I were on that dose because I had GCA with risk to my eyesight, I would not push my luck but would instead be even more diligent about protecting myself from the virus. That's just my personal opinion.

This is why I refuse to go on to facebook ..self styled “ experts “ giving out information such as this can be truly dangerous. . Despite horrendous situation re:Covid now , we must listen to medics and scientists , put down our phones and tablets as much as possible and glory in the wonderful burgeoning Spring.

In saying that my sympathy goes to all who are sick and bereaved .

Frightening times .

Tiny_ tim

I thought I remembered someone on here referencing a link which explained that part of the effects of the virus is it forces the immune system to begin fighting relentlessly to fend it off, and that in itself can cause a multitude of problems. Most of us PMRs have too strong of an immune system and that's why we take the immunosuppressants. We really don't know if it's a help or a hindrance when we consider the possibility of contracting it.

Thank you for raising the question as I have been wondering about my immunity while taking prednisolone for PMR.

My GP informed me of being in the vulnerable category and to stay away from the shops as my immunity could be compromised during this time.

I have had a phone call from my gp. I'm on 8mg pred tapered 1mg a month. ESR Normal. I have been advised to 3month isolate. Anyone with medical questions must talk to there gp/ consultant. Do not take advice from anyone else but them.

I can imagine the state I will be in if I stopped my 11mg immediately.... I had a call from my gp yesterday and he said I’m ok

I had a phone appointment with my GP this week and we discussed my risk given I’ve been on pred for almost 2 years now. He mentioned that my immune system is compromised given this, therefore i am at higher risk of contracting any infection, including COVID 19. I was advised to STAY HOME repeatedly throughout our chat.

He also explained the infection process and the role of inflammation, and directed me to continue tapering at my own pace while watching the ESR and CRP levels monthly (these levels are accurate and coincide with my symptoms). He mentioned that controlling the inflammation was important overall.

Lastly we discussed how I (might) fair if I did get the virus (I wanted to know his opinion). As I don’t have any other underlying conditions and I am in my 50s, this is positive. He gave me instructions what to do if symptoms emerge and/or escalate in severity.

In the end he advised me to stay home to avoid getting the virus in the first place. He was quite frustrated by some residents in our small town carrying on as usual with no regard for protocols. He strongly suspects there are already cases here, given the number of Canadians (snowbirds) who are returning from the states (half of our town are seniors).

He did not direct me to one of the assessment centres that are nearby as they are not the drive through variety, and they don’t do testing. Rather they assess and usually send folks home to remain in self isolation. He advised rather to call Telehealth Ontario or the provided 800 number for self or assisted assessment.

pugrescue
pugrescue
in reply to PMRCanada

So here in B.C. I was waiting for the telehealth with my rheumy scheduled for today. Yesterday his office called, and he has just been tested for COVID-19, as was showing symptoms. Prayers for him and family. That would put his patients at risk ( I have not seen him since Nov), but even worse he has a emergency office at our regional hospital and is there most mornings. Not good.

I am currently at 9mg after a year with GCA.

Everyone in B.C. is supposed to be self isolating, that is not going well.

HeronNS
HeronNS
in reply to PMRCanada

and pugrescue, in Nova Scotia we are ALL supposed to be keeping our distance from others. They closed down all provincial parks and trails when people congregated and municipal parks are also closed, although you can use a trail if it connects from street to street. We are told repeatedly to remain six feet apart from anyone we encounter and inside any stores we might have to visit. I live in a multi unit building and we are not allowed to let anyone into the building. I'd already started that myself, meeting my sons just outside when they drop off goodies for us, as there are lots of "snowbirds" returning and I figured our building would be as risky for any visitor as they would be for us. I have a suspicion, although nothing has been said officially, that some of our initial cases were brought in by dentists who attended that big conference in Vancouver at the beginning of March. A few days before St Patrick's Day there was a big party in one community which is now determined to be the source of the first confirmed case of community spread. Why the authorities didn't crack down on gatherings as soon as covid appeared in the province beats me.

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