Greetings from a very warm and sunny Eastbourne everybody
Have been having issues with really tired aching muscles, horrible fatigue and general lack of interest/motivation. Wasn't sure if this was due to a flair following a family holiday where I did rather push the boat out (And carried it home after!) I had been on 15mg since Feb 2018, initial great response to Pred until the holiday in April. I have been getting loads of grief from my GP to reduce, I did go to 12.5 for 3 weeks but not nice, lots of pain returned, I then went back to 13.5, pain reduced but I have been left with the above. I saw her again this week to discuss this, I did suggest that possibly I needed to increase my dose for a bit to see if a build-up of inflammation was causing the above, If nothing else the look on her face made me smile. Fair to say she didn't agree, and was quite adamant that as my GP it was her duty to warn me of the dangers of being on a high dose of steroids and that I must reduce faster. As we were so far apart I decided to take charge of my own health needs. I upped my dose of Pred to 20mg on Thursday, I cannot believe how much better I am feeling after only 3 days. I now have so much less discomfort, more energy and actually feel motivated. I am keen to now reduce back to try to find my optimum Pred level, any tips on how quickly I should be doing this? and possibly should I start now, is it likely that any excess build up of inflammation is likely to be gone? Trusting that others might already have this t-shirt? I'm not normally one for learning from others mistakes but in the case of PMR I'm quite willing to make an exception!
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Mike1964
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My GP started me at 20mg (blessed relief in hours) then after 4 days I had to drop to 15. It slowly went pear shaped with a creep back of symptoms. So back to the GP who (literally) threw his hands up in horror at my suggestion of returning to 20mg. Anyway I did increase, stayed there for 3 weeks I think, then reduced to 17.5, thereafter at roughly 1mg a month. Until my rheum had me reduce by 2.5, and guess what, another flare. I’m currently wavering around 8/7, started all this in April ‘17
I have learnt that the docs may well want us to reduce quickly, but it doesn’t work, and you just end up back on the higher dose. Reduce slowly, feel better and actually achieve a lower dose.
I’d say stick at 20 for 3-4 weeks, until you feel in control, then take a slow taper. But don’t overdo the activity, get plenty of rest. Good luck.
Thank you for this. It all seems a bit of a nightmare really I'm going to have to work out how many spare meds I have, rather suspect the GP will tell me to bug off if I ask for another prescription, well it is only my pain I suppose!
It’s all very well and good for GP to say reduce, but
a, it’s not her pain!
b. PMR untreated (or not treated with enough Pred) can also cause further
problems. Something they don’t seem to realise. They just twitter on about the steroids!
I’m sure they still think it’s like any other illness, shovel down a month’s worth of tablets, and voila it’s gone! No it hasn’t.
Looking at your previous posts I would say you’ve had a bit of a rollercoaster ride, probably not helped by GP.
So, you have a couple of choices really
1. stay at 20mg for a few day’s more, then try and reduce back down to 15mg in two steps at 2.5mg a fortnight apart. Might be a disaster, but on the other hand. Or,
2. stick at 20mg for longer as Soraya suggests, and then reduce. After a month you should be able to do 2.5mg drops (monthly), but you can always try 1mg a time, say once a fortnight.
I would usually say monthly reductions are best, but sometimes if the tapers are smaller then you might get away with fortnightly. At least down to 15mg. Then I think you definitely need to do 1mg tapers.
GP may not be impressed, but you sometimes have to just smile sweetly, nod in the right place, but then do what suits you best!
Hi DorsetLady, I trust you are as suitably blessed with the glorious sunshine in your fair County?
It is a bit of a conundrum isn't it! Sadly the realization that I'm going to be dictated too by Pred is starting to dawn. (Possibly a wiser man would have taken that into consideration BEFORE he started?) I'm sure working out a reduction plan based on how many "spare" pred you have isn't ideal. Guess as ever my simplistic logic was, try a higher dose for a week, if it works go back, no harm done.
Not as sunny as it could be, but warm nevertheless.
Your plan does work in many instances, if you can catch the so called flare quickly enough, and we do recommend it sometimes. But that is usually if you are coasting along relatively easy and then life jumps up and hits you on the nose for some obscure reason - and very often it’s a “one off”.
However, I’m a bit concerned that you have not had it easy so far, and that your inflammation may never have been properly controlled, if that’s the case then it’s a bit more difficult to get (back) on track.
You could try the short sharp shock treatment, and then back down to 13.5mg (15 mg might be better).
I’m sorry, but as you’ve found out, it’s a bit hit and miss at times, and definitely not helped by squeamish GPs!
Print off a couple of the slow taper plans that have been developed by patients. My doctor was very happy to let me use dead slow nearly stop or tortoise not hare when I showed them to her. It does demonstrate that the patient (you) is participating in reducing steroid dosage in the most expedient way possible, allowing for the dose to still be effective in treating the ailment it was prescribed for in the first place. I'm sorry, I can never remember how to get emailed copies of these taper plans, but they are from PMRGCAuk so someone here will be able to tell you how to get the "official" sheets. I asked her what she thought and she agreed the tapering looked fine and didn't mind if I used one of the plans. Mind you she was always very reasonable about the treatment, from the very beginning saying that we went by symptoms and I should stop tapering if pain started to come back.
Thank you Heron. Please see my reply above to DL. If I get stuck I suppose I will have to go back to my GP and beg and plead for enough Pred to get through, an "Official taper plan" might cut some ice? certainly worth a shot.
So pleased you've re posted this....Ive been trying to find it....Going to give it a try when I come back from Devon holiday in mid July. .I've been doing a 1mg monthly reduction (this month.. 3 wks 17mg 1 wk 16.5) and it's been ok ish!...but I wonder if your suggestion over 5 weeks might be better... Worth a try when hols are over I think...Di
You must have an alternative GP you could see? But if she insists, you could insist on a referral. Because if you are being forced to reduce too fast/too far, you will permanently be where you are now.
As the others have said - it isn't her pain and she obviously doesn't have much experience with PMR. Isn't it a shame you dropped a pack of pred...
Thank you Pro. I very much agree on all accounts. Once this much talked about but so far mystical Rheumy referral lands on my desk I will be changing surgeries ASAP! My biggest concern is being stuck in this no-man's-land, I can't really go back to work (Just been signed off for another month) but also feeling a bit of a fraud as I have some good days. Goodness life before all this was certainly a lot simpler!
You might be better making tracks sooner rather than later! That appointment may not be very soon - if at all since some areas are subjecting referrals to triage and someone looks at it and decides whether or not it is worthy of the attention of a real rheumy!
Thank you again Pro. I have been told that Eastbourne should pick it up as an urgent referral but to be honest I'm rapidly losing the will to live with it all. I think I will give it till Friday then look at the private route. Originally I thought about going to Chertsey then just felt too ill to travel that far. After your excellent suggestion to Google Dr Sam, I must say I'm a lot happier going back to Eastbourne. Goodness, what will I find to complain about once all this is sorted?
You have PMR? Is there any suggestion of GCA? Because I seriously doubt a "PMR on its own" referral will go in the urgent referral. Or it might - but an urgent referral just means you should be seen sooner than routine which means maybe 12 weeks instead of 18 (I pulled those numbers out of thin air, lord only knows what the current targets are, if there are any). To be seen quickly you need an emergency request.
I do hope I'm wrong. But I would imagine that Dr Sam might transfer you to his NHS list if you see him privately first.
I was referred to a Rheumatologist but had a 3 month wait. Didn’t feel that I could wait that long, as I wasn’t on steroids, so saw one privately. Saw one within 3 or 4 days and immediately put on steroids. Cost £200. Worth it.
After I saw the Rheumatologist privately, he rang me up. He suggested I then saw him at his NHS practice. I was diagnosed in January, and have been on a reduction of 1mg a month. Am now on 6mg from an original 15mg. Different for everybody. I have phases of feeling ok, but then can have all the nasty symptoms. I find that if go out for walk, even if I feel achy, it feels better than if I am around the house. I suppose it depends on the individual. I still have to stop for a rest quite often and can’t do as much as I did. Am not sure how much to put the pain down to the PMR and how much to steroids. Still trying to avoid taking the dreaded Alendronic Acid that are staring back at me from my pill collection! At least there are other sufferers on here who give excellent support and suggestions. All I can say is that I am glad that I saw a Rheumatologist privately, as it was important to see someone quickly! It hopefully will give you some reassurance Mike. I also found that I wasn’t rushed, whereas at the doctor’s it is a 10 minute consultation.
I had to go to 20 mg last week and will stay there for a month, then start tapering vv slowly! My gp was very understanding and it was her guidance. Already I feel better but keeping a lid on doing too much!
If changing your GP is an option then do it. The last thing you need with PMR is a battle for your meds. I am very lucky that my GP has been wonderful and let me lead my tapering. I took the very slow approach the first time as suggested in Kates book. Literally changing one dose a week for 7 weeks. We need to fool our bodies that nothing has changed! This is your PMR and you need to be in control. The stress of battling will only make you feel worse. Also don't pin your hopes on your Rhumy appointment. My first appointment which was through Benenden ( covered through work) was a disaste. Before I had even at down she had decided it couldn't be PMR as I was too young at 45 and that I should go and do a pirates class and lose some weight. I cried all the way home. Eventually I ended back with the NHS and was diagnosed at last with PMR, only 3 years after it started. Sorry for long post, all these so called professional make my blood boil. Best Wishes from not so sunny Kent
Hi Duddy. Thank you for posting, sorry you had such a shameful experience. Sadly I think most of us end up with boiled blood at some stage during this mad journey! I hope you are doing better now?
Waiting for someone to advise how to get more Pred to be able to make small adjustments to prescribed dose. I only get the exact amount, which he checks before issuing perscription, after starting on 15. for 6 weeks, straight down to 12.5 three weeks ago and have had several bad days. Last app 2 weeks ago when I told Dr I had upped it to 13.75 by breaking 2,5 in half for two days. He was not best pleased. I only have enough until I see him again in two weeks. This morning after an achy, fatigued weekend, took another 1.25 as need to be in charge of myself later this afternoon. When I next see him intend to show two slow taper plans saying that I want to try one.Will need to count up pills I need, plus a few for flexibility. Hope he responds.
Sadly Marymon as you can see from everyone's experiences, there is no rhyme nor reason with GP's! Some will sign prescriptions at will, others will dictate like your's. It is all very unfair, I'm sure if they were suffering they might rethink their approach! Good luck with the taper plan and hopefully your GP will become a caring health professional.
Yeah Mike, Just have to up my charm offensive. I have only met him twice I do get on with him very well, he thinks I need to be off Pred. need to reassure him I am not trying to get hooked just want to be able to function some of the time. Will work on it!!!
Thank you for this and all the excellent advice offered - as ever!
I have seemingly endless supplies of pred, the GP wants me to reduce, but has little interest in seeing me (I have now decided to see him twice a year and speak on the phone twice more), and has refused to refer me to a rheumatologist (despite me being 51on diagnosis), and I've had to virtually beg for a DEXA scan after I broke my arm.
Using Dorsetlady’s tapering plan, I have successfully reached 7mg per day from 17mg in November last year and am dropping gradually to 6mg. I dropped 2mg per month until I reached 10mg. From then on I gradually dropped by 1mg per month. So far so good. From 6mg to 5mg I may well use the DSNS tapering system which is even slower. Gradual tapering certainly suits me better and I am so so grateful for the help, advice and support I’ve received from this forum. As everyone on this site advises, you must try what suits your body best. No two of us react the same way but we all have the same goal which is to get well and to stop having to take steroids. Good luck.
PS. I also have an understanding GP who approves my request for a prescription for Pred whenever I need more without demanding to see me and without dictating how much I should be tapering by - he leaves that to me. Does it make a difference do you think that I have GCA but not PMR?
Sorry to hear you are having trouble Mike. I must admit I go on line and request automatically Prednisolene from my doctors surgery. I tend to stock pile it to be honest just in case. The rheumatologist I saw a long time ago (privately) told me it was as cheap as chips. I never see the same doctor twice (which may be a blessing). They do seem to be sympathetic to the aches of this illness, and when they suggest cutting back I just say I am trying to. Its your body and your illness, they cant appreciate how difficult this illness is, because they are not in pain. All the best Mike.
Thank you Reethebeat. Must say I love your name, makes me realise how little thought I put into my profile Trusting you are making headway on this interesting journey. Kind regards
Hi Mike I'm actually in Spain now and I have been tapering from 40m I was good at 17half m good 15m good but 12half I felt awful all our usual symptoms back with a vengeance I think it is a flair I'm learning such a lot from this site and all the help and advice from our friends so I decided after to go back to 15m pred and I also stopped taking them at 3am and take them in the morning this short sudden decision has it seems to have helped me thru this awful time I can enjoy the rest of my holiday in moderation ofcourse and will try reduce when I get back to normality if ever, hahaha
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I'm going to have to work out how many spare meds I have, rather suspect the GP will tell me to bug off if I ask for another prescription, well it is only my pain I suppose!
Advice please. Just don’t know where to go from here on pred dose.
Reduced symptoms...what are we going for here?
Where from here PRO
Oh well, here we go, more medication...
Where do I go now?
