Going up but not in a good way !! Have had today admit defeat and go up to 15mg Not sure how I got from 4mg in December to 15mg in January !! All seemed to start in that snowy weather I felt really bad this morning and actually instead of the normal mental block I have with increasing them I couldnt wait to have some breakfast and get the steroids down !! Perhaps did a bit too much yesterday but any little extra seems too much at present I decided that inflamation couldnt be good for my body and I would be better with the higher dose My Doctor thought it would be the case of 15mg I am now hoping I dont have to go back to 20 mg where I started but if I do I do as I dont want to spend my time just sitting around Resting !! They dont appear to have kicked in yet but fingers crossed this will work I was talking to Pam at PMR fighters Northeast and Im not the only one I know who hates to increase them it always seems a backward step but I must keep telling myself that I could have worse things ( it doesent feel like that sometimes !!) Anyway best wishes to all and hope everyone else is having a good spell Mrs G
So sorry to hear that, Mrs G. Ihave been on steroids for just 2 weeks at 20mg. I t has been an up and down ride but today is certainly the best I have had so far.
Saw a consultant on Wednesday and said my shoulder problem was not PMR but either impingement or frozen and will manipulate it, so I have been suffering two different things.
I will phone my GP tomorrow and give her a sitrep and see what the next step is.
I do hope you get back to a lower dose again. Is this the kind of thing that can happen?
Oh dear Mrs G! I have just gone up from 7.5 to 10, I haven't actually had a blood test for a while and am due to see the Dr. but just felt, like you, that I couldn't keep on feeling that everything made me ache so this morning I sadly upped the dose. I didn't feel too bad in the snowy weather but then I wasn't going anywhere or doing anything much except trying to keep warm. I thought at first the aches were due to not being used to walking, and taking any exercise of any sort but they have got worse if anything. I'm just a bit worried that I've done it off my own bat (that's a funny expression - can't think of another one), but I'm not able to see the Dr until the end of the week and then waiting for a blood test.......He is very much one to leave it to the patient and how they feel \"You're the expert on how you feel\" sort of thing.
But it is a bit disappointing isn't it? One of my New Year Resolutions was to try and get a bit fitter - easier said than done!
So lots of sympathy, Green granny
Thank you both for your good wishes and Green Granny I am sorry you too have had to increase your doseage Its a difficult decision to increase but I had already gone up from 4mg to 5mg before Xmas and we were flying etc and felt great when I came back and thought I will reduce to 4mg before I see the Dr in mid Jan Unfortunately with all the snow and having horses it was stressful getting to them getting feed even ! and frozen water pipes so I went dowhill quickly I tried 6 then 7.5 and eventually 10mg and wasnt too bad My Dr was surprised how high my bloods were and thought I might need to go to 15mg I thought I might be able to rest my way out of it so she was right She always says you know how you feel but always gives me monthly blood tests anyway I feel better this evening but we all do so tomorrow will let me know if this has worked I will talk to my Dr before increasing again ( I really hope I dont have to ) I am beginning to think that struggling along is not worth it and I am better off on higher steroids than being unable to do anything Sog I read a while ago on this website a paper on PMR I think by Dr Daskputa ?? the Rheumatologist at Southend Hosp who specialises in PMR who says There are 3 kinds of PMR I that was like my first bout which lasted 2 years with no blips and off steroids then 2 lasts longer 3-4 years lots of ups n downs but goes then one type that stays with you My Dr did say that quite a few people stay on 5mg long term So only time will tell what type I have !! Best wishes to all Mrs G
Mrs G and Green Granny - I was so sorry to read your posts today and really sympathise with you both. Your experience seems very similar to mine when I had to increase back up to 10 on 2 occasions over the last almost 3 years. I do know how down this can make us feel in that first few days of the increase but also that we do pick ourselves up very quickly again, probably mainly due to the fact that we feel so much better without the pain. When I picked up my new prescription yesterday I mentioned to the pharmacist that I was hoping that my PMR and GCA was going to burn itself out this year but that I was a bit achey trying to get down to 2mgs. She said that she was sure the weather had a lot to do with it, and this does seem to be borne out doesn't it by people having to increase during this very cold weather. So keep those thermals on and keep as warm as you can....Spring is, hopefully, not too far away - the daffodils are poking through in my garden! 
Dear Mrs O, You are always so encouraging so thanks, and keep in touch Mrs G - perhaps we can encourage each other a bit, even if it's only comparing the bad times! I have just taken my second dose of 10mg so hoping it will kick in soon and I can start to feel a bit more alive. My poor husband keeps saying hopefully \"You are feeling a bit better these days aren't you?\"
BUT have got snowdrops coming out in the garden and only another week of January. And, thank God, no earthquakes! Keep warm everybody, Green granny
Yes Green Granny lets hope these higher doses bring relief Still felt a bit stiff this morning fine this afternoon but hoping tomorrow it will all kick in I was looking at the Medicine net website this morning at peoples experiences and symptoms and everyone seem to differ so much but I did find a few people who had had PMR at least twice so I didnt feel quite such an oddity after that !! I dont think I have found anyone on this forum who has had it twice like me As soon as this weather improves I am going to try to walk more if I cant do other exercise but the cold really seem to get to me I have snowdrops out in my field and it is getting much lighter in the evenings so roll on spring !!
Hi Mrs G. Glad you are getting some improvement. I'm not showing much yet but then only had 2 lots of 10mg. And I went out this afternoon and got really cold and damp, I should really have just called a taxi (husband not around) but waited for a bus, just felt I wanted to curl up somewhere warm!
Thinking back to our cold weather which I think really didn't help us - it takes extra energy to keep warm and I guess our blood moves to new areas to conserve heat, if you see what I mean. But I'm also thinking of general life style. Over Christmas I ate too much, drank too much, didn't get the sort of exercise that suits me but on the other hand did get tired looking after visitors, all sorts of things just weren't the sort of pattern that seems to help PMR. So I've been trying to keep an eye on diet etc. Exercise, apart from a bit of walking, only half a mile at the moment, and some housework, is just a no brainer this week. And a cat doesn't compare with horses for looking after!
Appt with Dr isn't until next Weds.week so I will just have to hang on for the blood test. I am seeing a new Dr. in our practise who is supposed to specialise in rheumatic conditions, but he works in a local hospital some days so I have to wait..Hope he's worth it! Best of luck, Green granny
Hi Green Granny my 15mg has now kicked in and I feel so much better this morning rather than having to wait till lunchtime to feel reasonable I hope you are having something similar I wish now I had done this last week when my Dr said I may well have to get up to 15mg to get my bloods down I shall have to learn to love these steroids as i dont want to spend my life resting and hobbling about !! Yes this cold weather doesent help I am sure I am less tolerant to cold now since I have this I hope your new Dr does the trick My Doctor only does 3 days a week so I arrange everything around her and plan my appointments in advance to avoid her holidays !! I realised what a difference a DR meant when she went on Maternity leave when I was near the end of my first bout of PMR and I had someone who treated me as if I was 5 without a brain !! Also criticised me for putting on a stone after being on steroids for 2 years while she must have been 4 stone overweight !! I didnt go the Surgery for the 3 years I was PMR free but when it came back my old DR immediately remembered it was my CRP which was the main indicator Best wishes and I at least should have a bit of a smile on my face today ( even if it is only the steroids causing it !! )
Dear Mrs G, I'm glad really you're feeling so much better. I'm not too sure as yet, but I walked a mile this afternoon which is further than quite a while AND it was largely uphill which I have found pretty bad lately. I didn't go too slowly either. Then had to come back home for the gasman, we need a lot of central heating stuff done, so it was showing him around and a bit hectic for an hour or so when I guess if I had been able to sit down for 10 minutes I might have been fine.
I have just been looking up the side effects of alendronic acid, like steroids they seem to include muscle and joint pain and weakness. I sometimes wonder what's causing what! And how do we know when PMR has burnt itself out if perhaps we're getting those side effects? Does that make any sense?
I hope tomorrow is another good day for you. There was a glorious red sunset here tonight so maybe it's \"red sky at night, shepherd's delight\"!
Green granny
Hello Green Granny and glad that you've managed a mile long walk today. I, too, managed that distance very briskly yesterday for the first time since before the snow and have done it again today, so it just proves that in my case the lack of the daily walk over the 10 days of the snow caused my stiffness to return and how essential my daily walk is.
As to the problem you have highlighted re the Alendronic Acid side effect of muscle pain, that's a bit worrying. I don't take bone protection as apparently it could be detrimental to my sole kidney so I haven't looked into the side effects. As you say, such side effects from that particular drug could cause confusion with the PMR symptoms. It's for that reason that I haven't been prescribed statins for my high cholesterol due to their propensity to cause muscle pain. Perhaps the pharmacist could advise you whether there is another suitable bone protection medication that does not have that side effect listed. I'd be interested to hear what you discover as I'm sure would many others. Hope you have another good walk tomorrow.