Starting steroids today


Got my trial steroid prescription last night and starting taking them today. My doctor said i should see some improvement in my symptoms if its PMR but shes thinks i will still habe some pain from OA and cervical spondylitis. Im hoping that if i have PMR i will see an improvement which is enough to convince me to continue with the steroids. I have been given a weks supply of steroids and have doctors telephone appointment in a weeks time to discuss my symptom and progress.

I was wondering if anyone else started on steroids and had an improvement of symptoms but still had some pain from OA.

Thanks Christine

15 Replies

  • Christine, I have spondylolisthesis and know how confusing it can be to spot which is which whilst suffering from other pain-producing conditions when the pain of PMR and/or GCA joins in the 'fun'! However, I found that I gradually learned to know which was which, and, hopefully, you will too. Some people on steroids have said they found that their OA was helped at the higher steroid dose and became apparent again once at the lower doses. If you do have PMR, the trial dose should remove at least 70% of the pain from that source within a few days, or even within hours if my experience is anything to go by. Good luck!

  • Sounds amazing as any reduction in pain would be welcome. Its my eldest sons 30th birthday today and we are having a family meal. My hope is that i feel feel im back in the land of the living and can enjoy the evening instead of feeling like this heavy rigid person that i have become.

    I will post later and let you know how i feel.

    Thanks Christine

  • Christine,

    I have OA in both shoulders and left knee. My shoulders don't worry me much, but I have always had some pain from my knee when standing/walking except for the period I was on very high doses of Pred.

    I was taking Cocodamol for my knee for a long time (only one, once or twice a day - more unpleasant side effects!) but decided early this year I wanted to come off them altogether.

    I'm now down to 3.5mg, which is not enough to mask any OA pain, so I have had a couple of steroid injections into the knee itself. It does seem slightly ironic having steroid injections as well as taking steroids, but they obviously work in different way! Of course you are limited to the number you can have, and as dr says, over time they lose some effectiveness, like any drug.

    Lots if people use gels etc, but not any including ibruprofen. Before my latest injection I did try a new gel patch, which seemed to work quite well, but as I only used a couple of times can't give it a glowing reference. But I will try again when my present injection wears off!

    As Celtic says, the steroids will definitely help if you do have PMR. Good luck.

  • Thanks, maybe after this weeks trial i will know what pains down to what.

  • Hope you get the same sort of result I had - I felt human again after 6 hours! The pain wasn't all gone and some hung around for several months - mainly the bursitis problems that came with PMR - but that evening I could have quite enjoyed a party providing I could have kept awake! Have a good rest this afternoon if you can and then enjoy it.

    How sure are you it is OA? I saw a rheumy quite early in PMR (well, after about 18 months but all things are relative since I've had PMR for over 10 years). She didn't recognise the PMR but insisted the hand, foot and knee pain I had was OA, she "could feel it", that was without an x-ray. All of them eventually faded away with pred and have never returned even though I am now down to 4mg and no-one else has ever commented on OA. Everything in the hips that COULD have been OA pain has been identified as bursitis due to the PMR. The low back pain that an orthopod told me was wear and tear and I'd have to live with wasn't "bones" at all - it was entirely muscular and various approaches including Bowen therapy have dealt with that very effectively. After a good 7 years of thinking I had OA and was condemned to a life of unremitting pain - at present I have NO pain at all. Doctors don't know it all - a physiotherapist or Bowen therapist much sooner would have saved me a lot of pain.

  • Hi,

    I took my steroids at 10.30 this morning and at 5 pm i was travelling with my daughter and youngest son to meet my eldest son to celebrate his birthday. For the first time in a long long time i felt human my old self. The pain has not been bothering like it did and its 11.30pm. When i was out having a meal i found myself turning my head to talk to others without it been a massive effort and i wanted to be social and enjoy the occasion and i do beleive that my step quickened once or twice. The heavy dragging myself around seemed to have gone....

    So far so good, better than i could have hoped for.

    OA diagnosed in spine and possible starting in hips also long standing cervical spondylitis. But was my pain all due to PMR after all ?

    My pain when trying to sleep as always been severe on shoulders so tonight will be very telling.

    Thank you so much for yours and everyones support it has already made so a huge difference to me.

    Thanks Christine

  • As Saxjody says - Bingo!!!!!

    That's about the same time scale my improvement came in. It improved bit by bit over the next couple of weeks and then over the next few months other things improved very slowly.

    Just DON'T make the beginner's mistake of trying to catch up on what you didn't do since the PMR started. This is just managing your symptoms - it isn't a cure so you have to do your part with the management too by pacing and resting. Exercise is important but not in big lumps - small sessions with rests in between are the way to go about everything.

  • Hi PMRpro and Saxjody,

    I had a great start on first day of taking steroids followed by a pretty bad night. I was unable to sleep and had restless legs. Exhausted the day after and lots of pain in nexk and shoulders. Second night i managed to sleep, the day after i had horrible burning shoulders which were hot to my touch but not painful as such. Yesterday was a better day. I was feeling a little confused after feeling good on the first day of steroids and then i dipped. Is this usual or should i be feeling an impreovement everyday. Iv got until thursday for my weeks trial and then my doctor is going to ring me.

    Prior to getting the steoroids my doctor said she was giving me 4 tablets a day at 5mg each however she said prescribed take 3 daily.

    Thanks Christine

  • 15mg/day should be enough to achieve a fairly good result - and what you are looking for is a 70% global improvement in your symptoms within about a week. Some may be improved more, others less but you should feel dramatically better overall. The difficulty sleeping isn't uncommon, I wasn't so sure about the restless legs but having looked it up it is something some patients complain of. These sort of effects usually improve after a while on pred as your body gets used to it a bit more and also as the dose drops.

    What did you do on that first day? I bet you did far more than you have been doing, maybe without being aware of it! You still have to manage things a bit yourself - avoiding the activities that make pain worse as much as you can. I couldn't clean windows and still struggle a bit. For example, I can't sweep things with a broom and too much vacuuming is also a no-no. And I can't carry a heavy bag at all.

    You probably need to plan a rest in the afternoon if you aren't sleeping well - you don't have to sleep for it to help. I had 4 late nights last week - rugby, rugby, visitors and visitors - only an hour and half each night but it's taken me a few days to recover! However well you feel in the end on pred (and I do) doing a bit more than you are used to leaves its mark. The pred is only dealing with symptoms - it doesn't affect the underlying autoimmune illness that is the cause of the whole thing.

    Some people need 20mg to get a good result - the 15mg takes longer to get to the same place but for most people is enough and helps avoid the side effects which are generally worse with higher doses.

    Your shoulder problems are possibly to do with bursitis and if so they will take a bit longer to settle down, possibly a couple of months or more to be totally better. But some people are NEVER entirely pain-free - even though some doctors think they should be. Something that might help some of the persistent bits is Bowen therapy - it has helped a lot of people to get rid of some parts of the pain - and that makes the rest easier to manage with oral pred.

    Don't panic - and do keep a note of how things improve/problems you are having for the week until you speak to the doctor. You may still feel a bit ropey after only 1 week but if you think about it you will realise you feel a LOT better than you did without pred so write it down so you can be clear about it when talking to the doctor.

  • Hi,

    I did have a busy day on my fi

    rst day of steroids but very little pain.

    Its funny you should mention bursitis i have glanced at that in the past. Also iv felt like iv had fluid on my shoulders which feel like blisters under the skin. If its bursitis could this cause me to feel unwell with sweating, maybe it could if iv got an infection which could have raised my esr.

    Maybe i got PMR and bursitis or bursitis without PMR. Either way its difficult to know whats causing what.

    Thanks Christine

  • No - you don't have pain at the time - but you used your muscles more and then they are telling you you did too much.

    The sweating is a part of the autoimmune disorder that causes the symptoms we give the name PMR. It can also be a side effect of taking pred. Bursitis can also be part of PMR although it can also occur on its own.

    The raised ESR is in response to the inflammation caused by the autoimmune disorder, almost certainly not an infection.

    What I'm saying is - if you try to carry on as your previous normal then you will still get muscle pain and feel even more tired afterwards. You have to do your part too. The other thing I'm saying is that a more targeted approach to some of the symptoms if it is appropriate can make it easier to manage the others.

  • I know that my physical activity is responsible forw seating and hotness, sometimes it can be a simple thing like reaching to get a drink. Like you i can not use a brush ot vaccum cleaner, i bought one of those stick cordless ones and i still have the same problem. Can i ask you if the steroids are working would the sweating get less over time.

    I am finding it difficult to know how much better i feel on steroids after the initial good day. My doctor is easy to talk to but had to use google to look at PMR symptoms. When i asked her about investigating an underlying disease that could be causing PMR her response was its usually vascular and did not enlighten me any further.

    I appreciate your knowledge and support as a couple of weeks ago PMR was a condition that i knew very little about.


  • She's quite right - PMR is the symptoms of an underlying autoimmune disorder that causes inflammation in very small blood vessels. An autoimmune disorder is one which makes your immune system unable to recognise your body as "self" so it attacks your tissues by mistake. There is no cure for the autoimmune disorder so all that can be done at present is manage the symptoms as best you can. Pred reduces the inflammation and does a lot - but the rest is up to you. You MUST reduce your activity for the present and learn to pace yourself and rest between times.

    This link will take you to a page on another forum with a whole load of links to places where you can read about PMR and GCA:

    This link will take you to an allegory about living with a chronic autoimmune illness:

    Actions that are repeated or sustained, of the sort you do a lot in housework are particularly bad for causing discomfort. Anything you do requires far more effort than usual for your muscles - imagine it being as if just doing a bit of dusting required the same effort as doing the spring cleaning in the whole house!

    Dust is very patient - it will always wait for you! Or splash out on a cleaning lady if you can afford it - I have a lovely lady who comes once a month or two or if visitors are coming and does the heavier stuff I still can't even think of doing. Not that I particularly want to if the truth were told. Life's too short to worry about a bit of dust.

  • Bingo! Steroids are a wonder drug in this disease. Learn to love them as your friend in the next few years and welcome to the PMR club X

  • What are your symptoms? What is your steroid dose? If your symptoms are related to PMR usually it is associated with a high sed rate and will significantly respond within 24 hours . It appears that most patients are started on 15 - 30 milligrams of prednisone. I was started on approximately 30 milligrams and responded within 12 hours.

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