hi,i am a few hours away from being 55 and i was diagnosed last week and still struggling to find out much information about why, how, and when etc. i was told last year i could be wheat intolerant, so am dealing with that and now i don't even know if that is true or if the results could be the same for both. my head is all over the place and the gp never has time for a real chat. i have been suffering with back pain, siatica,and stiffness for about a year, then slowly i noticed other things like,heavy aching muscles, i feel bruised all over and pins and needles as well as stiff achey hands. the blood test came back showing inflamation so i have been put on prednisolon, i had 25mg for 6 days now dropping down to 15mg for 2 weeks then 10mg for 2 more before i see the dr again. (no idea if thats normal??). i was hoping for the miracle difference the gp had mentioned but sadly only a little improvement. i felt like i had become and old lady way before my time and struggle to do things i have always done,sadly my hubby also has lots of health problems so seems happy to expect me to carry on doing things i have always done, i have a small holding with animals so hope i will be able to continue with them, i just have to learn to pace myself. sorry for rambling but i hope this makes sence to some of you out there, just feeling really low 
although hubby told my gp i seemed brighter!!
will i ever understand this and feel better? - PMRGCAuk
will i ever understand this and feel better?
I do wish I knew where some doctors get their tapering approaches from! That bears no resemblance to anything I know that works.
How much improvement have you seen after a week at 25mg? If it is less than 70% overall there has to be a question as to whether this is really PMR - and he certainly shouldn't be reducing to dose at all just yet and certainly not to 15mg for 2 weeks. The 2015 Recommendations say the starting dose should be the lowest effective dose in the range 12.5 to 25mg - so you obviously are the 25mg end - and really you need at least 2 weeks at that before even thinking of lowering it. Some people take longer - and you have obviously had this hanging around for a while.
Is there another option at the practice?
thank you for the reply, i think maybe i will go back to the gp if the pain gets worse again, maybe its her little test to see if the meds worked more than i thought , i couldn't really decide how much better i felt as i think maybe some pain could be unrelated. i just want to stop feeling so sore and stiff
I can't believe you only had 6 days at the starting dose. If you think about it, if it's pmr, the inflammation has spent months building up and needs to be dealt with. The pred just stops the inflammation building up but needs time.
I was 55 when I was dx and thought for months I was turning into a senile old woman. The pains in my neck were helped the same day, but it took a few weeks to dampen most of the pain.
You need to see the dr. Until they use the pred properly and it works then fine. Otherwise they need to investigate further. Try taking the pred as early as possible to let it help more by the time you care for smallholding. You are going to have to take rests and pace yourself. Let us know how you get on the the gp.
Oh and happy birthday.
i'm beginning to see a real pattern here, maybe my gp isn't the best one to see, should i push to be referred to a rheumatologist? or see if some one in the practise specialises in these types of things, she already hinted at not being a big fan of fibromyalgia, and seemed happy that the inflamation was present, on my blood test. thank you for the birthday wishes 
If your markers are up then there is inflammation. If you can see another gp that would be good as most people see a gp rather than rheumy. However if you dont get action from the gp then ask for a referral. I think the guidelines are Conservative in terms of pred but it may be worthwhile printing the guidelines and suggesting a longer time frame. Ask for a collaborative approach. Even the guidelines say individuals require different dosages etc. Even the first line of the management guidelines says reduce slowly once pain is controlled!
If she dislikes the concept of fibro I'd give her a chance - even the guy who first described fibro wishes he hadn't as it is a much abused term, equivalent amongst some doctors to "You have pain, I don't know what. can't be bothered to think hard so we'll call it fibro!" I'm not saying it doesn't exist - it does - but not as often as some claim ... If you have inflammation, it isn't fibro.
Most GPs can manage PMR - you really only need a theumy if it doesn't behave or there are major questions related to age, presentation and a slow response to an adequate dose of pred which may be up to 25mg - more than that or a minimal imrovement after a couple of months isn;t acceptable and you probably need a rheumy, as you do if you show any signs of GCA. In that case it should be an emergency referral within 24 hours but for PMR you may wait months, years in a few places.
I agree with PMRPro, you seem to have a sympathetic GP who is trying to help. I'd work with her to see if it is PMR and if it is if you can get a dose of Pred that manages symptoms before thinking about rushing off to a rheumatologist.
definitely go see a rheumatologist and don't just depend on your GP. you mentioned aches in your hands, this doesn't sound like PMR ,if anything it sounds like rheumatoid arthritis but there is a spectrum of conditions which are all a bit similar and really only a proper rheumatologist has the training and knowledge to sift through the evidence and figure out what you have. PMR usually responds extremely well to about 15mg of pred within 24 hours, and if it doesn't and requires a much higher dose and a longer time its potentially not PMR and needs a different treatment. you mentioned wheat, you will find a lot of people commenting on wheat in this website, many suspect it has a role to play, personally I found eliminating it helped a lot. don't waste time letting your GP faff around, ask to be referred to a rheumatologist and of the GP resists, find one who WILL refer you. good luck and don't worry so much, most people when they first get these kinds of symptoms feel that their body has failed them and that they will never feel better again, but you will, the inflammation brings emotional baggage , when the inflammation is eliminated the emotional stuff will also retreat, just get the correct diagnosis and then the correct treatment, then take the drugs, adjust to the situation, relax and get on with living.
thank you, i think i was just having a melt down, i've only just got the hang of gf, and then all the aches and pains etc, have just left me exausted mentally and physically. my hands still feel strange but some of the pains seem to be easing. so will stick with it and see how things go. i do wonder if maybe its too easy to lump everything under one title where in reality it often turns out to be seperate issues just at the same time. i'm going to start a diary of symtoms etc to see what i can discover
BTW - I am wheat intolerant but not eating it doesn't stop the PMR symptoms, it jsut stops the wheat intolerance symptom of a wild itch similar to the rash you get with one form of coeliac disorder, dermatitis herpetiformis. But my problem isn't gluten, it is the wheat starch.
Happy birthday - despite PMR!
i just remember hearing about inflamation but i think it was maybe internally not blood. so much going on in my head right now and thank you for the birhday wishes
Try and get some rest. We do have an overview of pmr etc that dorsetlady hands out with the welcome wagon. She is currently recuperating from surgery so I will try and post it tomorrow if it doesn't appear.... Found it!
healthunlocked.com/pmrgcauk...
Sorry i have that as well but was out for a couple of hoursxx
I thought it was pinned. Its not a big task.
Thank you so much, I had a quick read and it's so well written and makes sense, I will have another read in the morning when I can hopefully retain the information better 😊
When i started with PMR it took me 2 weeks for total relief from pain at 20mg reducing quickly will probably result in more pain for you good luck. A large number of the medical sector seem to have little knowledge of PMR that's just my option after suffering for 7 1/2 years. If you are expecting a short journey with this condition you will be disappointed.
Follow this forum and read website and Kate Gilberts book - good luck
Welcome ! Although we would have preferred not to have ended up with this condition and needing this forum! You will pick up from here though such good information ,experience and expertise. I agree with all what has been said about the rapid reduction plan given to you by your GP. Do try another GP in your practice, now armed hopefully with so much more information. It’s very early days and your heart and emotions must be all over the place. Things will get better, you just need time to adjust and get your pain under control. Do let us know how you get on.
Hello Candy28. I was at least a week on 25mg before my pain subsided completely. I stayed there for 4 weeks. Now on 5mg 2 years on. As advised by Daffodlia, Kate Gilbert’s book Polymyalgia Rheumatica and Giant Cell Arteritis: A Survival Guide is very much worth reading. 🌻
I agree about arming yourself is knowledge, knowledge is power. If nobody in your practice is knowledgeable about PMR then the best you can do is find a friendly GP that you can train. Then you can help them through PMR, you will be in control of your illness which you need to manage at it's pace not any GP's idea of how it progresses/diminishes. What I have learnt from here is that the disease is different in all of us, very different. Good Luck.
As Mama Beagle says , the disease is different in all of us . I had carpal tunnel and aching wrists in both hands before my shoulders joined the pain party and I got a diagnosis . I needed 30 mgs of pred to get rid of the inflammation and pain and was referred to a rheumy. I reduced much, much slower than your GP suggests. I still have aching wrists but it’s not too bad now . Follow Dorset lady or PMR Pro’s tapering plan when you reduce. Good luck and welcome to the forum !
just a little update, i suddenly noticed during the last week that i'm feeling better, more able to do things and less stiff and in pain. i;m still on 15mg for another week but not looking forward to dropping down as gp suggested. will see how i feel, but i definately feel a lot better than i have in ages
I really would try to see them again and get them to let you either stay a bit longer at 15mg or not drop by 33% to 10mg because the chances of it working well are very small.
well i did lower my dose to 10mg and as predicted the pain came back. it was actually a good thing as now i know the diagnosis was right. i have seen the gp angain and have been put back up to 15mg for a month then i reduce to 14 for a month and so on which sounds more like what i have read on here. i have also been put on alendronic acid 70mg once a week and colecalciferil calcium tablets twice a day. gp said she wanted to protect my bones so i feel a lot more confident in her now than i did. thanks to this page and all the help i have recieved i get it now i think
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