I have been on 15mg of pred for 3 weeks now. 4 days ago I had a bad fall, full stretch on a road and landed on my right side/arm/knee/hand. I grazed my knee and elbow and ripped my clothes. I also pulled muscles in a few places. I'm finding it hard to feel the benefit of the pred like I was.
I have also had a very sore right elbow since being on the pred (?coincidence). It feels like a tennis elbow thing - no swelling but muscle/tendon pain when I straighten my arm out and on certain twisted moves and lifting with it and aching at rest. Should I speak up about this? I have just been referred to a rheumatologist, should I wait to tell them?
I was supposed to reduce to 12.5mg yesterday but haven't whilst I'm like this, is that wise? Maybe continue for another week on 15mg?
Any advice is most welcome from you lovely people.
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MiloCollie
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If you don't feel well - don't reduce. And yes, it really would be an idea to get advice about the fall and the elbow. I just toppled over on my bike, it wasn't anything like as bad as you describe and I wasn't at a particulalry dose of pred either - it was a while before I felt better.
No I just got up and carried on. None of my joints or bones hurt and I don't think I needed an x-ray anywhere. My elbow is no worse but it doesn't seem to be improving.
Yes, the fall can cause a flare and stress added in does not help.
You also started on 15mg 3 weeks ago and have reduced to 12.5mg yesterday. That is far too quick. I am assuming your GP started you on that dose and as usual is in a hurry to get it down.
PMR does not work like that. Continue on your 15mg and do not reduce at all.
Why are you being referred to a Rheumy? PMR is normally dealt with at GP level. On the other hand maybe your GP is playing safe.
You could be waiting quite a while to see a Rheumy, so if the 15mg does not help the issue, contact your GP and tell him.
The starter dose for PMR is 15mg -20mg as some people do not get the relief with 15mg.
Finally try and do nothing strenuous at present the oxygen supply to your muscles is depleted, so treat your self like a 'Precious Princess' for now.
Yes I thought the drop to 12.5mg was too quick anyway and due to the fall I haven't done it and won't. I've been referred to rheumy because I have type 2 diabetes and he wants to be careful with the pred and also because I have a family history of RA. I had the blood tests for it on Thursday and I know I may be waiting a while for my appointment.I'll ring my GP this week to discuss staying on the 15mg and tell him about my elbow and maybe ask to increase to 20mg??
Thank you for all the very useful information in this forum. Such a help and so informative! May I ask why it is that GPs, as you say, are always in such a hurry to reduce the dose of prednisolone? Is it just to avoid all the side effects?
This is the longest (well third longest reply I have ever written) but sometimes it just seems the right time. So here goes and please remember I knew nothing about medicine, how the NHS worked etc. All I knew was that my Mother had both GCA and PMR and when GCA came along I discovered no progress and got out of my pram with 4 other ladies.
Steroids are a powerful drug and most times if you need them - no more than 10 days usage is normal and then (it appears to me after many years of talking) the dose is normally no more than 10mg. This is because your adrenal glands think you have enough to manage and slow down and don't bother to work. (PMRpro will explain that better than I can if she happens to read this).
As people with auto-immune illnesses come along (and there are more than we think)> Sometimes it is a whole new ballgame for a GP. PMR is much more common than it was originally thought, in the old days - Granny sat in a chair beside the fire because of aches and pains. Then as medicine discover more about humans - old illnesses are recognised as being different.
For instance, my practice had never had one GCA case but one of the partners had experience over 20 years previously with one person had lost their sight because they all thought it was migraine etc and she had sworn, never again on her watch.
GPs are all told that pred is a powerful drug and this leads to caution. They are right to be caution in usage, but then along comes us and others and their safety of patients kicks in - the 'do no harm' factor.
Pred was developed for use around 1959/60 all the side effects are known and can be dealt with if they occur. Thank goodness people used the equivalent of what we have now 'The Yellow Card Scheme.
So we need to educate GPs - to do this the sum of £10,000 was raised to start a system in the North East, but along came Covid and it is on hold - just like everything else.
I have found it useful over the years and have advised people to download the BSR Diagnosis and Treatment of both PMR and GCA. Then you learn and can discuss with your GP (book a double appointment at the end of the day when we get back to normal).
You can also take information you gather on here and gently explain slow tapers, just in cases and also ask for items they do not offer ie Dexa Scans before using AA etc.
You will find, as I did, that knew kids on the block are slightly more receptive with active patients.
Now I am sharing extracts from a letter written to us when we closed down.
The following is an extract from the Consultant Rheumatologist who helped us to set up the charity and is now one of the people who will be running the 'on hold education set-up trial'.
Ten years ago when I spoke to two patients who wanted to set up a support group and improve the standards of care for people with PMR & GCA. I was a naive, enthusiastic, know-it- all young rheumatologist.
I then realised that most of what we learn in medicine came from Patients more than text books, we would always value the important work you have done in teaching myself, my
colleagues, students and your fellow patients.
I thank you for all I have learnt from working with PMR GCA North East. I have made many friends here as well as earning my reputation in the medical profession because of the unique
opportunity you gave me as a medical advisor and patron over the past 10 years.
I could not thank you enough.
So education does pay off, but slowly and always without a fight, unless you lose your temper like I can and occasionally that pays off.
Jinasc, I really want to thank you for the time and care you've taken to respond. This is a wonderful forum for those of us who are really quite ignorant about PMR and I'm always so interested and grateful for people's input! Half the time I'm more grateful for the fact that, compared to so many, I have very little to complain about - and my heart goes out to them.I wrote in once before explaining what had happened to me and got a somewhat dismissive reply of shock and horror that I had been treated the way I had been (on prednisolone for a very short time going from 15mg per day to none in four months). It wasn't very encouraging when one knows so little about PMR as I did then and when I was looking for guidance. One of the reasons my doctor wanted me off the drug as soon as possible was because I was due for the first Covid vaccination and he didn't want me to be on it then. I have since learnt that being on a low dose doesn't affect the vaccination.
I'm going to write a short (well, as short as I can make it!) history of what has happened to me to see if anyone can make sense of it. My doctor retired on Friday and the last thing he did was put me back on to Prednisolone dose of 15mg for a while to be cut down after that. Please bear with me in the following mail.
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Firstly apologies! This is very long, but I'm working in the dark and looking for help and suggestions. Last August I was given the shingles vaccination by my doctor as a preventative measure. Two weeks later, having been in perfect health until then, I started having pains in my neck and upper and lower back and at the base of my skull. I had very poor rotation of the neck. I tried physiotherapy, osteopathy, massage, but didn't get better. I was sent for a full body MRI (history of breast cancer) and blood tests. Everything, including the inflammation markers, was fine. In November my GP suspected I might have PMR, despite there being no evidence in tests, and put me onto 15 mg Prednisolone for 5 days, then onto 10mg for 5 days and then I was to lower the dose very gently at my own pace until I was on 1 mg. Because I didn't know at that time that I could adjust the dose according to pain, I stuck to the instructions, despite starting pains in other parts of my body, most notably in the buttock and thigh and later on in the shoulder. I finally came off the drug in February after being on a 1/2 mg for about ten days. And my inflammation markers on a second testing are still fine.Since then I have had no medication except pain killers at the recommendation of a rheumatologist to whom my GP eventually sent me because I was still in pain, especially in the right buttock and left shoulder. It is very difficult for me to put weight on my right leg first when I go upstairs; I have to go up with the left leg first and then follow with the right. The rheumatologist didn't come up with any conclusive reason as to my pain. He put me on 400mg paracetamol twice a day and gave me an exercise to do to stretch the thigh muscle. That was two months ago, so of course I can't go on taking painkillers all this time (most of them say no more than ten days!).
I was determined to find out why I should be suffering like this, although I have to add that the pain is quit bearable for most of the time, without knowing why, so I have made an appointment to see a spine specialist (to eliminate the possibility of my back being the source of the trouble) and with a shoulder specialist (I had an arthroscopy about fifteen years ago and after the operation the surgeon said that I would probably need further surgery later on in life - so I'm quite prepared for this shoulder problem to be independent of the other pains). I still have very poor rotation in my neck.
Then last week I couldn't bear the continuing discomfort every day and the feeling of fatigue and even nausea on occasion (but these may just have been painkiller induced!), so I phoned my GP and, as I said above, he put me back on 15 mg Prednisolone per day until I see the rheumatologist again. Unfortunately, I made a mistake when speaking to my GP and said the appointment was in ten days; in fact it's in three weeks - far too long I think for me to be on 15 mg.
I have always heard that with PMR you feel relief on this kind of dosage after as little as four or five days. And I have to remember that no-one is sure that it is actually PMR that I have!
So here come my questions for your enlightened and so helpful people:
1. If I don't have PMR will I feel no difference in the pain after that time? Does Prednisolone get rid of pain due for example to muscular causes? As the pain I normally have is not excruciating, it can't be because I need a higher dose.
2. Now that I can't speak to my GP anymore and have still to wait three weeks to see the rheumatologist, can I stop Prednisolone after five or six days if it's not doing any good because I don't have PMR? I'm sure the adrenals will not have suffered any response in that short period of six days.
3. If there's no difference in the pain should I rather cut the Prednisolone down slowly over the next couple of weeks rather than stopping abruptly in the next three days?
4. If I do feel any difference (which I have to confess I don't so far after three days) and I then conclude that it is PMR I have, can I then start very slowly cutting down the dosage before I see the rheumatologist in three weeks or do I have to stay on the 15mg till then?
Thank you for your patience if you've managed to read all this!!! I apologise - but I'm really in the dark as to what is wrong and how to deal with it. And please don't miss my introductory remark - I had the shingles vaccination!
Please do copy and paste it into a new thread - when you put something in the middle of an existing thread a lot of people won't see it as they don't get notified if they didn't follow/save the post originally. I follow every post and read almost every reply - so does DorsetLady, I doubt anyone else does.
I will try to address your concerns - but if the 15mg has achieved pain relief in a typical PMR way, then being on it for 3 weeks is probably safer than 3 weeks of daily paracetamol at maximum dose. The normal starting approach is 4-6 weeks on the initial dose until symptoms are under control and the blood markers are falling if they were raised (20% of patients don't have raised markers). Three weeks at 15mg is nothing - some people have 3 weeks at 80mg if they have GCA and then decrease the dose 10mg per month - that is a long time down to 20mg!
You will only get relief in a few days if what you have is PMR AND the dose you have been given is enough to manage the inflammation. The starting dose should be the lowest effective dose in the range 12.5 to 25mg - there are a lot of variables at play here Maybe I missed it - but how well did the original 15mg work? You should get about 70% global improvement within a week or so - but only if the dose is enough. I had my better than 70% improvement in 6 hours - because the stiffness and some of the pain was gone. The contrast was unbelievable, but it improved every day for the following 10 days - I kept a diary - although some pain (groin, hands and feet especially) took a few months to go altogether. It depends on where the inflammation is deep seated - bursitis takes a lot longer, muscles feel better much faster. The 2-3 days miracle is not that common - especially if you aren't on enough pred to start with.
When I started pred I was given a 6 week taper - 2 weeks at 15mg, drop to 10mg or 2 weeks and then drop to 5mg for 2 weeks, stop (he wouldn't have it that it was PMR). That is perfectly safe and probably the sort of approach you should/could use under the circumstances, providing you have enough pred to do it. You need to make a note of how you did with 15mg first time round, how you were on the 10mg and how the pain returned.
The degree of pain you have isn't really linked to how the pred takes effect. I lived with PMR for 5 years and would never have said it was excrucaiting pain - except when the myofascial pain syndrome part of the PMR led to a spasmed back muscle, piriformis and the sacroiliac region usually. I have been hospitalised with THAT! Everyone perceives pain differently and it also depends on what is most involved in the PMR.
Buttock pain could be isolated piriformis syndrome (or it is part of PMR). The thigh pain - you don't detail it but if it is on the outer aspect and hurts when you lie on that side, trochanteric bursitis may be the cause - it also can be isolated, also can be part of PMR.
It could well be your back that is the source of the problem - but muscular, not the bones, and most spinal specialists wouldn't necessarily recognise it. A local orthpod I saw privately after a whiplash injury (paid for by the insurance) told me my low back pain was wear and tear and I'd have to live with it. Some months later his hospital colleagues recognised it for what it was - spasmed muscles, I was admitted to hospital and treated - it worked wonders! Unfortunately other things conspired against me but the ongoing pain clinic and physio that was initiated then makes a big difference.
Thank you very much for your detailed response! I note what you say about copy and paste. I'm afraid I'm not very good about paying too much attention to pain unless it's really commanding - so I don't remember how I first responded to the original 15mg dose. I certainly didn't keep a diary - despite what it may look like from my earlier post, I don't really have a lot of time to make a note of things outside my normal research work!
I should have said that after my first visit to the rheumatologist he thought my thigh pain was a trochanteric bursitis and the shoulder pain was a shoulder capsulitis. As I said, there was no overall diagnosis and he gave me an injection of 40mg Triamcinolone and 3mg 1%Lignocaine. Neither injection made a great difference and after a week or so I was back to the original pain, leaving me unable to lie on my right side because of the thigh pain or on my left because of the shoulder pain. I have had to accommodate my sleeping position accordingly!
It could be just a coincidence that the different pains are contemporaneous but not associated. This is why I'm going to see various specialists.
Thank you for your helpful suggestions regarding the Predisilone.
I don't really have a lot of time to make a note of things outside my normal research work!
Well, it's your health, so maybe you should make the time...and if it's PMR it's not going to go away in 10 mins so you might find that keeping notes (even very brief ones) will help you in the future.
If you are seeing various specialists they all need to be told the same story - and that's where notes are invaluable - as I sure you appreciate in your day job.
It really is something you need to think about for living well with any chronic condition and that applies to both PMR and MPS. Without knowing what happens in what context you will end up spending your life stabbing in the dark and never learning. Personally, I can't think of anything better to spend one's time on than one's health. It can save a lot of heartache later,
I managed to keep an eye on how my PMR and pred interacted at a time when I was working running my own business and preparing for an international housemove - I'm not suggesting a monumental tome - but the relationship of actions, dose and symptoms is crucial.
I wasn't making out that I am busier than anyone else; I simply meant that I have never in the past, even when I had breast cancer and complications thought of keeping a diary of how I felt every day. I have a very long and detailed report for the specialists of the history and they have already been sent it so that I don't have to spend time going through it when I have m y appointment. But I would like to thank you for all your help, PMRpro!
I didn't think you were. But in the case of chronic rheumatic disease you will find that there ISN'T a detailed clinical history, or if there is, the chances of the doctor you see being totally au fait with it is minimal. 'Twas ever thus but particularly the case in these rather interesting times, so it pays for YOU to know your illness and how it responds to management because there are no protocols as there are for BC or other cancers. And everyone is different applies a lot more.
I got a tennis elbow out of nowhere during a flare, but I realise you may have bashed yours during the fall. Mine did settle eventually after increased pred. Very weird.
I really feel for you 😥 Falling is just awful. It’s so shocking, and makes one unconfident. Be your own best friend and rest up and take care. I’msure the very knowledgeable people here will advise you, and hope the GP / Rheumy will look after you well. 🌺🌺
Falls are a real shock to the system. I wouldn’t reduce. Perhaps have an xRay. I fell over a suitcase once and ended up with a fracture/ hairline crack in my shoulder. When they told me I nearly fainted. It’s always raised when the try to foist Alendronic Acid on me.
Age and tissue thin skin means the lightest graze turns into an ‘issue’, If I was a cartoon character all sharp edges would be animated and attacking me! I have a regime now. I use salt water to keep the wound clean, let it dry and then apply a Hydraseal dressing. It provides a bacterial and viral shield, it’s waterproof and can be taken off without damaging new tissue. Really good! I hope you feel better soon 🌺
This is a picture of a wound dressing called Hydraseal.
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