Polymyalgia, prednisolone and coronavirus
Posted , 13 users are following.
hi, I am 71 year old female diagnosed with PMR 3 years ago. started on 15 mg prednisolone, down to 7mg a year ago and was at 4.5mg until gp advised reduction because of infection risk of coronavirus. dropped to 4mg but now have flare up. not sure what to do next. is it better to struggle with low dose and minimize infection risk or should I increase. really appreciate any help and support out there. thank you AllyCD
0 likes, 20 replies
EileenH AllyCD
Posted
Were you fine on 4.5mg? Above 5mg is the level the rheumatologists have chosen as an increased risk due to the pred dose. PMR itself is a risk factor - not for getting it but for management if you were to get to the later stages - and so is being over 70.
You can't alter the PMR and you can't alter your age - on both of those grounds you should be practising stringent social distancing anyway. The self-isolation level is not significantly different for most of us except not going out at all. Not all of us are BoJo with a self-contained flat and meals service!
Here in Italy we haven't been given different levels of isolation: we all must stay at home, no visitors, shopping only in your own village/community unless you don't have a shop, only food shops and pharmacies are open at all. Exercise must be close to the house and preferably only walking, no long bike rides. If we are out in the car we must have a declaration document with us to say why.
I would try a higher dose just for a few days to get the inflammation under control and go back to 4.5mg (you don't need to taper after just a few days). You might have been able to taper under normal circumstances but this is all scary and stressful - and stress and PMR don't mix well.
Really - why don't doctors put their brains in gear and think logically!
andypolly EileenH
Posted
Eileen,
I'm sure this question has been asked before, but I've not been keeping up with all the posts.
I've been on pred for 4 years. I'm now very successfully down to 3.0 mg per day and confident that, using the DSNS method I could be off by the end of the year. My symptoms are totally under control.
My question is about immune system suppression. And I doubt you can answer it, but here goes. At 3 mg would I expect my immune system to be recovering at least a bit? How low would I need to get to have a fully functioning system.
Thanks for your help. You've been an amazingly well informed source of information to us all. Stay healthy.
Andy
AllyCD EileenH
Posted
hi EileenH thank you so much reply, good not to be alone in this. will try increasing for a couple of days. how much by? in answer to your question, yes, I was fine on 4.5 . my GP did mention that if I was to get Covid 19 the pred dose would need to be increased anyway but she did not say by how much. any ideas on this? shall follow with interest your response to andypolly and tha nk you again
heatherjoy29 AllyCD
Edited
As a matter of interest, how quickly did you drop the prednisolone dose? I know it is only 1/2mg but if you are very sensitive to it you may well react to that small a change, especially if your body has stopped producing its own... I too would be tempted to increase it for a short period. That is almost certainly what a rheumatologist would advise even in this current situation. I am on 7mg reduced from 8mg about 6 months ago and the advice generally is that if we get an infection we need to up the dose, but if you are on any steroid sparing medication like I am ((suphasalazine and leflunamide) to reduce those or even stop them. Hope the stiffness improves soon!
AllyCD heatherjoy29
Posted
Just on prednisolone. After the first 3 months advised to drop to 12.5 and then another 3 months to 10. after that was advised 1 mg per month month but revised to 1/2mg when blood test showed counts above normal. so have been tapering 1/2 mg every 2 months with slight adjustments if test showed high count. Doing ok, down to 4.5 until suggested I dropped further (after one month) to 4 and then flare up! have increased back to 5.5 and so far just minor stiffness in neck. not sure if to increase further or how to taper back down. thanks for your reply really appreciate it
EileenH AllyCD
Posted
If it were me I'd drop back to 5mg and see how you go. At this level there is no hurry,
When you have a flare like that a good way to sort it out is to add 5mg to the dose where you flared for up to a week when you can drop straight back down again without tapering - but NOT to the dose you flared at, go to the dose above.
AllyCD EileenH
Posted
thank you Eileen, that is exactly what I am trying. sometimes it takes me 3 days before I know whether body is going to accept a reduction I.e. fine at first but then discomfort can set in. Is this polymyalgia or reaction to steroid withdrawal?
EileenH AllyCD
Posted
Steroid withdrawal, your body protesting about the change of dose, usually happens immediately. same day or next day, and then improves. When it takes a few days that is almost always the dose is too low - and it then gets worse. The smaller the step down, the longer it is spread over, the less likely you are to have problems.
AllyCD EileenH
Posted
Down to 5mg. no stiffness just a dull ache left. will persevere as rather not go back over 5mgs unless I have to. wish I had had all this info before - thank you so much, it was only by chance I discovered you. will let you know progress - how is it you are able to have so much useful info when by comparison my gp seems woefully uninformed?
EileenH AllyCD
Posted
Because I have had PMR for 15+ years, been on pred for 10+ years, am heavily involved with the PMRGCAuk charity and a patient research partner for a group in the north of England. I have experienced all aspects of PMR and pred myself as well as having read a vast amount of the literature. The average GP hasn't done any of that! 😉
AllyCD EileenH
Posted
Aha - that goes some way to explaining it! I have had a quick look at the website and shall be informing my GP of its existence. I was told with a CRP reading of 175 that it would 'burn itself out' within 18 months. I was surprised when told that no one knew what caused it that I wasn't referred to a specialist and have been largely left on my own apart from irregular blood tests. Support cannot be underestimated and am so grateful to you for yours. Italy cannot be the most comfortable country just now for PMR although so beautiful in other ways. My father spent his last 8 working years in Milan so visited often. Will let you know my progress, hope you are not completely inundated by requests for help but thank you
EileenH AllyCD
Posted
I am a moderator on the PMRGCAuk forum on HealthUnlocked - far more active now than this one with a range of people with their own particular "speciality" within PMR and GCA. But like the charity it stems from here - 5 intrepid women met here and set the ball roalling.
A CRP of 175 is of little meaning in the context of PMR/GCA. The level of blood markers simply doesn't appear to correlate with severity or duration - mine were never out of "normal range" and it was bad originally and has lasted a long time. No-one can predict anything about PMR - except that it is unpredictable! The 18 month figure is years out of date and was a figure mentioned in a single study or article - not even sure which now. The mean duration of management of PMR with pred is 5.9 years, one assumes the PMR lasted a bit less as there was a final taper off the pred to take into consideration,
AllyCD EileenH
Posted
I have found the HealthUnlocked site and Ragnar's comments. Wish I had known this earlier but guess one of the perks of self isolation is having the time to do one's own research and not necessarily taking the gp's word as gospel. Not being technologically gifted I would like to continue my contact with you on this site. My thanks and appreciation to the other four intrepid women - I have ordered the book - dropped to 4.5 today, fingers crossed, if determination has anything to do with it ...... I am beginning to wonder whether it is a question of fooling the immune system to behave itself rather than a cure in the more traditional sense.
EileenH AllyCD
Posted
I wasn't one of the 5 - before my time, I just tagged along later. It probably is easier to ask me a question here, it is rather quieter .
AllyCD EileenH
Posted
Thank you Eileen. Also got message which looked like it may have come from you which says it has been deleted by a moderator.
EileenH AllyCD
Posted
It was just the same as that but not in this internal thread which was confusing so I asked them to delete it as a duplicate post.
AllyCD EileenH
Posted
hello again, alternating now between 5 (after several days) and 4.5. Aching round shoulders and hips but can live with that. Am wondering if wiser to stay as low as possible with some discomfort or to put dose up again. Many thanks
EileenH AllyCD
Edited
This is a video produced for their patients by the rheumatology team in Leeds:
https://www.youtube.com/watch?v=uNGPfntHgtI&feature=youtu.be
They advise not changing your doses of anything that might result in a flare. 5mg is the borderline - but if 5mg means you are not having any signs of a flare I would be taking it. If you flare AND were to get infected despite your best efforts then you would probably be harder to manage with Covid 19. After all - you have been on 5mg or more in the last 4 weeks.
AllyCD EileenH
Edited
Eileen, thank you for your time spent in sharing so much factual information with me. Also the link with Leeds. It has all been very interesting, and it is reassuring to feel that I can begin to make decisions based on well researched fact. I did feel a bit lost with a disease I had never even heard of until 3 years ago. I hope we all stay well through this, the sun is shining here with spring flowers all around, it is beautiful and makes it even harder to appreciate the menace out there. 🤗 Clapping for the NHS! (I suspect I shall still find some more questions for you as we progress)
andypolly EileenH
Edited
Eileen. Thanks for that link. You are just the absolute best source of reliable information. You are an absolute star and I, amongst many others, am very grateful for everything I've learnt from you about how to cope with the condition we share. Please accept a huge virtual hug.