Now tapering down on second week at 12.5 was on 15 for 3 weeks majority of pain disappeared at 15 though still had pain in lower back buttock and leg I am now having circular motions of pain over my back and aches on top of legs what should I do ?go up was suggested by consultant but I feel there's a panic for me to come off them because of the damage they can do with having heart condition high ,blood pressure and diabetes . I feel in total panic.lack of sleep is so hard gone from nearly 10 hours to 4!!
plus when do you guys see your GPS, rheumatologist for check ups . I just feel left to get on with it 😕
Thanks in advance for any advice
Written by
rachelbell
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Around 75% of people with PMR never see a rheumatologist. Those that do may have a GP who is not very knowledgable about PMR or has other problems that might exacerbate the PMR. This may be true in your case. Some people manage with very little help. Reading this board one does come across people who have doctors that are really not helping them by pushing them to reduce, reduce, reduce. The patient in the end then has to increase again having gone through a lot of unnecessary pain. On the other hand one does come across some doctors who are worth their weight in gold.
Morning Rachelbell. I have never had a Rheumy and work with my local GP. It would appear to me that, at the moment, you are not taking enough Pred to keep the inflammation under control and the longer you stay in that situation then eventually you will need even more Pred for longer to bring things back to where you are relatively pain free and with a better quality of life.
You say that you feel left to get on with it but your consultant/Rheumy? has already suggested/recommended that you increase your Pred dose, and I assume he/she has done that in full knowledge of your other medical conditions.
You need to go back up to the amount of Pred where you were last comfortable and If 15mg was that daily dose then I would be going back to 15mg and staying there for a few weeks until you have the inflammation under control again and then reducing slowly down from 15mg in either 1mg or 0.5mg stages on a slow taper.
There are a number of tapering plans in the FAQ's section which will be worth having a peruse through. A very low carb diet will also help with your diabetes again information available in the FAQ's section.
I found many, many years ago that worrying/stressing about not being able to sleep only made things worse. If you are uncomfortable and can't sleep then get up, change position, wander about, have a hot drink, have a read, watch the TV ( walk the dog!!) and then sleep/doze back in bed or a comfortable chair. A good recliner is very useful here.
Acceptance that you have an illness and that for the time being your old "normal" patterns of daily life have to change.
If that doesn't work or is not a workable option for you then a chat with your doctor about supplying some suitable medication may be a worthwhile thought.
Then you probably need a bit higher dose for a while to get all symptoms under control before reducing - I know it sounds counter-intuitive but it really does make a difference. If the original inflammation that has built up is not cleared out it will remain difficult to reduce the dose without the symptoms flaring.
BP is easily managed, diabetes may be a bit harder but it can be done.
My GP seems to know quite a lot about PMR and this made her determined to refer me to Rheumatology ASAP. My friend's Dad has a daughter who works in his GP's surgery and they sent him to Rheumatology like lightning. I think that is local policy?
There was a 6 month gap after my first session (Covid period) but they now seem to see me for a check up every 4 months.
I'd like to talk about the sleep issue. Is falling asleep difficult for you or are you waking early or intermittently through those hours? In either case the following may be of some help.Fairly on in my PMR journey I was achieving only 4-5 hours disturbed sleep and my rheumatologist was somewhat horrified telling me that I should be sleeping more hours: he didn't give any advice on how to achieve this. Also, around this time I was having regular, gentle hot stone massage treatments and the therapist happened to have some information on mindfulness meditation on her desk and was holding weekly group sessions very near to where I live. I joined the group and it was the best thing I'd done since I was diagnosed with PMR (apart from joining the forum). You can read all you like about MM but there's nothing like being taught in the 'real world' so please keep an open mind. We were taught while sitting on a hard chair and warned not to close our eyes incase we dropped off and fell off 😀: " Some hopes", I thought but once or twice this almost happened.
The main principle was founded on breathing and letting unwanted thoughts 'go' and bringing oneself back to the present; I was quite sceptical about this. We started by consciously and gradually relaxing every part of our bodies, then taking two or three slow deep breaths with slow exhalations followed by 'normal' breathing and literally listening to each breath. Another thing was to concentrate on the surface we were placed on. This last is important and is much easier when you are in bed and more able to be aware of your whole body and allowing every part to relax into that surface. When thoughts arose, "Did I lock the back door?" "I must shop for.... tomorrow" I learned to let those thoughts go and bring myself back to the present.
This took practice but I can tell you that it worked and still works three + years later and comes naturally. I aim for seven hours but sometimes it's more like six but the quality of my sleep is much improved.
I have to stress that that practice is needed; if you decide to try please don't give up after initial unsuccessful attempts. You can practice sitting in your favourite chair at any time during the day using breathing techniques to let intrusive thoughts go and coming back to the present.
I have attached a link that may be of some use if you want to give it a try:
I would say if your consultant has suggested you increase then do just that . In terms of how often I see my consultant, I paid for a private consultation initially as I was told my NHS appointment could take months. I am now in the NHS system , having seen the initial consultant twice . I am now under one of his team , I saw her in May , had bloods and bone scan , then saw her again in July. She asked me to get bloods done again next week and then I am seeing her in November. She is excellent. My GP referred me straight away based on my blood tests.
Hi there, like you I've recently had a mini flare. Managed to get down to 5mg...only reducing by 0.5mg 15mg I had to go up to 40mg. I've been tapering ever since. Interesting that your symptoms are the same as mine. Buttocks hurt, arms, legs and hips. I tried increasing to 6mg. Ten days on that and still uncommfortable, so decided to go back to 6.5mg and will stay on that for possibly a month again then try once more to come bck down. Already my eyes are playig up, that went away on 5mg and nails are dreadful, bruising bad too.
Good luck and hope you soon feel better. By the way my sleep pattern is dreadful. I find it hard to drop off, it's sometimes 2 or 3am before I nod off.
Diagnosed December 2019. Such a rotten disease when you have other things going on too. Apart from asthma which is completely control I consider myself very lucky not to have any other health issues going on. I’m not taking BP meds or Cholesterol. Like you I’d just like to get off the Pred asap. But must take the tapering very slowly and not be impatient……sadly, that’s a hard one for me !!
Yes extremely. I take 10 tablets a day not including my steriods . Can get very depressing at times . I get fed up with people saying I look so healthy if only they could see the inside😱. I've also had oh well you should be okay in few years!!
Yes, I get the same. No one understands any health issues unless they've experienced them for themselves. My daughter actualy said to me the other day 'well mum you can't die from PMR' Oh, that's alright then haha. The thing is when a disease goes on for many years people get fed up of hearing about it, that's understandable I suppose. That's the good thing about this forum, we all understand how horrible it is and how badly it affects us. Also no cure for PMR, just goes into remission, when it feels like it that is.
Always here for you if you need a chat and can chat privatley too if you would like too. I've made two very good friends from the forum, we now email each other....they're both lovely ladies.
Thanks for asking. I’ve been waiting to let you know after next Tuesday when he sees the Pre-Assessment team. Happy to say all his levels are good at present. Seen the surgeon that operated on his femur. He is pleased with the healing process. However, at least another year before he can remove the implant and get that right hip operated on. Just to get his left hip done asap would be brill
Rachel I have never seen a rheumatologist but in the UK that is normal. Where do you live and how long have you been diagnosed. You need to fill in your profile please
I was diagnosed in June with both Diabetes and PMR diabetic nurse thinks the trauma of PMR trigger Diabetes. I Live in Cornwall uk. I filled in my profile last night well I thought I did ! 😐
Not the bio bit…Go into profile -select update - and under your avatar/banner -you see the words “Hi I’m rachelbell” -just add a bit about yourself there -that’s what we see…
In Norfolk the policy is to treat in primary care (GP) only unless 'the patient' is still experiencing problems after two years. I was left otherwise to manage myself although I was given attention ie blood tests or scans if I ask for them. I tapered at my own leisure and had just got down to 4mg over about 22 months when I experienced a major flare following Covid. I am now awaiting my first consultation with a PMR specialist which has taken about 3 months from referral. Visiting my GP practice, I saw a different GP each time and I never felt that they were very knowledgable and were having to refer to written advice and guidelines. I was able to inform myself and I think they realised that I could be trusted to be sensible It has really only been since the flare that I feel I need some more informed backup, but even then I am not expecting much to change really. As I have been on steroids now for over two years I would appreciate some reassurance about the longer term effects and how they are affecting me specifically
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