Posted , 10 users are following.
I have been given confusing advice once again. Rheumatology sent letter out re vulnerability status ending with NB do not increase steroid dose if contract covid- 19. My GP just advised me to definitely double steroid dose if contract covid. what advice has other been given?
0 likes, 16 replies
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Boone gillian75478
Posted
I'm certainly no expert, but I cannot imagine why your GP would say to double your dose. I wouldn't do it.
EileenH gillian75478
Edited
What is your current dose? Have you had a synacthen test to assess your adrenal function?
If the dose is low (under 7mg) or there is a possibility of poor adrenal response to stress, including trauma, infection and so on, then you would be told to take extra in the event of such an event. However - there is evidence that using higher dose corticosteroids in Covid 19 does not improve outcome and may make it worse.
So I think I'd be inclined to listen to the rheumies - but do my utmost to avoid getting it! And if you do - contact them.
gillian75478 EileenH
Posted
Thanks for your reply. Am currently reducing from 5 - 4 mg on DNA method. also on methotrexate which I know I must stop if signs of covid. I have had a good year (fingers crossed) and have been quite healthy since hip replacement last year but have been on steroids for long time - 12 year now. Haven't had synathecan test.
Am minded to go with Rheum advice as current BUT my GP has 40years of experience and been very good in past. As you say best to avoid covid altogether! Keep safe and well everyone.
EileenH gillian75478
Edited
The dose will be the reason your experienced GP said to double the dose if you got an infection. And you will have to stop the mtx - so there is a risk of flare and flared PMR would probably complicate management of Covid 19 (not that anyone knows yet). Doubling your current dose still leaves you at less than me!
Keep safe!!!!
dmart7 gillian75478
Edited
It is a good question which will run for a while here. I wouldn't claim authority here. But I've read many times before that it would be advisable to temporarily increase the dose during unrelated periods of illness/infection. And I've just seen a Society for Endocrinology paper on COVID-19 which specifically says that adrenal insufficient and steroid dependent patients should "in the first instance...double your usual doses of glucocorticoid replacement".
Given ambiguity, I'd probably go down the middle. Increase it by 50% for no more than 4-5 days. I wouldn't want to find myself reset to a higher dose.
But hopefully, others on the forum will be able to give more definitive advice.
karenjaninaz dmart7
Posted
If anyone gets covid19 while having pmr I suggest the input of a qualified physician by phone. That is such a serious illness for some that speculation about diddling with prednisone is not warranted.
(retired nurse practitioner).
AllyCD gillian75478
Posted
hi I have also been told to increase dose by GP but not given a figure if covid symptoms appear. Presently on 4.5 after 3 years coming down from 15. So glad Eileen has contributed, think she is a star.
EileenH gillian75478
Edited
I have just had this article flagged up to me and thought it was very relevant here:
https://www.medscape.com/viewarticle/928072
It is from a newsfeed aimed at medical professionals but often also suitable for more general consumption. You may have to register to read the entire article but it is free to do so.
It confirms what I suggested - the GP was ahead of the rheumy in that he was remembering that at a lower dose after more than 3 months of long term steroids you are at risk of adrenal insufficiency if you get a severe infection such as Covid 19. It is definitely something that needs to be flagged up to your medical team if you were unfortunate enough to catch it.
gillian75478 EileenH
Edited
Thank you Eileen - at least something to refer to in case of need. hope you are keeping well yourself., and best wishes to anyone reading this.
EileenH gillian75478
Edited
This
https://www.medscape.com/viewarticle/926940?src=wnl_tp10n_200410_mscpedit&uac=150045MJ&impID=2340633&faf=1#vp_3
is an explanation of the controversy about pred and Covid 19, and this
https://www.endocrinology.org/media/3566/sfe-covid-19-advice-statement-for-adrenal_pituitary-insufficient-patients-2020.docx
is the official approved advice from the Society for Endocrinology.
Thought it might be helpful to have handy - to offer to doctors who aren't endocrinologists.
Boone EileenH
Posted
Other than on this board, this is the first I've heard anything about adrenal insufficiency. Your second link states "If you have adrenal insufficiency...." So I take it this is not relevant to my particular situation....
EileenH Boone
Edited
Depends to some extent what dose of pred you are on and how long you have been on it. I'm surprised you haven't heard it mentioned - it is talked about on the other 2 PMRGCA boards of which I am a member.
Once you have been on a moderate to high dose of pred for more than a few weeks your adrenal function is, at the very least, blunted. In emergency situations the normal response of the body is to make a large amounts of adrenaline/cortisol in a burst to help cope with the emergency. If the response is blunted - it may not be enough. The normal procedure if you require surgery while on pred is for hydrocortisone to be administered during the operation - and the situation monitored closely post-op.
When you get below 10mg it becomes even more critical and at very low doses it has been found that probably half of long term steroid users have deficient responses as well as being on too low a dose to cope, at higher doses this is a bit less critical - this was a fairly recent study which may or may not have provided accurate figures because the population studied was limited to patients who had difficulty in reducing their pred dose and were checked as a result. They are sure, however, that more people have some degree of secondary Addisons due to long term corticosteroid dose than they had previously thought,
AllyCD EileenH
Posted
Eileen, I have read all the information with a combination of interest and alarm. My question now is do I continue on 4.5 prednisolone after 3 years of reducing from 15 mg or am I safer, with reference to Covid 19, to up the dose in preparation and postpone the taper until we reach calmer waters? Would add that I am full of admiration for your continued research and seemingly tireless ability to respond to us all, thank you
EileenH AllyCD
Edited
You should not stop the pred- under 5mg is considered relatively safe in terms of risk of catching Covid 19 and stopping pred suddenly even at this dose would put you at risk of an adrenal crisis. Nor should you increase the dose unless you need to for PMR symptoms. Taking a medication to control an existing rheumatic condition is fine and should be continued. It is the use of high dose pred to manage Covid 19 that isn't advisable - on the evidence from SARS last time. Who knows when it comes to this one? I would continue where you are and if you are having no problems continue the very slow taper.
Boone EileenH
Posted
I was tapering off prednisone for most of a year, and now I'm back on at 5 mg for apparent symptoms of GCA along with recurring PMR. So I guess that makes me adrenal insufficient? I also halved my atorvastatin dose - back to 10 mg, which I hope is not particularly risky? It seemed my PMR started when that dose was increased to 20 mg about a year ago....
EileenH Boone
Posted
It certainly puts you in the query range for adrenal function. It is said that it can take a year for it to be back reliably even after getting off pred altogether. It is a long term project - it doesn't happen overnight, Below 5mg it may be worth asking for a synacthen test, better at 3mg though. That doesn't show they ARE working, it is more complicated than that, but it shows if they are CAPABLE of producing cortisol.