Diagnosed PMR Sept 2013. Started 20 mg pred...been on pred ever since. Numerous tapers to reach below 5 mg...always return (eventually) to 7-ish range.
Today, I am (once again) back at 7 mg, after gently nudging myself to 6.5, then 6, and finally giving up. After 2 weeks, the same old pain returns...shoulders, hips, and all the rest!
We are moving into autumn season with the shorter rainy days, and my SAD looms around the corner. This bummed out mood is probably associated with those seasonal changes, but I'm also getting bloody tired of having PMR, and the additional consequences of reaching age 72, with flabby muscles, low endurance, depressed mood, and Wrinkles too!
Oh well, the alternative to getting older is not desirable, (read:dead), and pred keeps me able to move, slower though I be... so, I guess I can count my blessing...i only have PMR...not some fatal illness...and I still have my mind. (Most of it🤪)
Cheers to you all...Purplecrow.
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You probably aren't going to like what I'm going to say Barely 5 years is still well within the median of 5.9 years. If I were at 7mg both I and the rheumy would be ecstatic.
I'd wonder if that, instead of fighting the PMR, accepting 7mg for the next 6 months might be a good move?
I believe what u say...and know PMR will resolve when it does.
Other than things Ive already said, not much is wrong, except my lack of patience with the length of time gone by, and rowing the same stretch of water over and over.
Oh well, time to go work in my garden, I still have tomatos on the vine, and need to get them gathered before more rain.
thanks for the boost, voices of sanity help ease frustration.
"Rowing the same stretch of water day by day…" well stated! My heart goes out to you as well as my prayers. It's tough and it's boring and exasperating to live with pain, etc. take Care. Elizabeth
I don't feel I row the same stretch of water - I go with the flow and don't keep shoving at a lock that is stuck. Every so often I try a 1mg reduction - I usually know pretty quickly if it isn't going to happen. To be fair, now it is less the PMR and more the atrial fibrillation that shoves a spanner in the proverbial works but either way it stops a lower dose of pred. But that's ok - I feel OK if I take enough and THAT is more important than numbers.
I love this picture you paint. I’m not only trying to row upstream, I’m trying to forge ahead all the time, rather than tying up and watching the world go by until I have more energy, or simply resting the oars and enjoying the surroundings! I’ll ponder on this today, it’ll distract me from the PMR!!
I am at 9mg and it's 7 years this week....I have been up and down many times with pre d mostly because of poor ridiculous rheumy advice......I have accepted one day it will burn itself out and nothing I do can influence that.....I have an appointment next month for adrenals to be checked, but I have very little faith in getting any answers....it's just a waiting game and managing the best we can.........and like PMRpro, would be very happy at 7mg......good luck
Poor purple and all of you. It sucks but as usual PMRpro is spot on. My doc reckons I’ve had this for MONTHS undiagnosed, hidden as it was by the fibromyalgia. So I have no idea when I got it. Ageing is a tough gig anyway and as women we feel we are losing areas of our lives that were significant. Magazines are full of advice on how to enrich the “golden years” but we cannot do most of it! Cxxx
So sorry that the “ black dog” is stalking you. My friend swears by her blue light therapy lamp ( medically certified) for her seasonal affective disorder.
Your tomato task sounds very satisfying.
Getting down from 7 mgs has been the hardest drop for me. I have done a week on 6mgs after two failed attempts in the past. This time it seems to be sticking, we’ll see. Timing is all sometimes.
my first therapy light was prescribed as experimental, about 30 years ago. It set at bedside on a timer, and worked like a charm. Its time to pull it out again.
The tomatoes are awesome, I picked 5 lbs of red ones, and shared with the neighbors...still have twice as many waiting to ripen🍅
💜🙏🏽💜
Ohhhh Purplecow, I'm sorry you are feeling so low and unfortunately, I have no words to lighten your spirit. You got there in the end... we are better off than many others who suffer from far worse (although that does not make our suffering any less painful). Chin up Buttercup and maybe tomorrow will feel like a better day!
While I’ve “only” been on prednisone 18 months, I commiserate with you. 7mg is my ideal dose as far as I can tell, though my DRs continue to push me down and into the pain range. I also dread the cold dark season, but who knows, the PMR could lift any day...
You are in the same boat as me I have had pmr since
November 2013.
I have been on 7mg for 8months I have tried numerous times to taper to 6.5mg but every attempt ends in failure it is very frustrating I've decided to stay at 7 for another couple of weeks and then try 6.75 to see how that goes.
I am frustrated by it all but I do realise pred is my friend and try to keep as upbeat as i can.
Me too! 71 years old and coming up to 4 years with PMR. Recently had to go up to 7.5mg from 5mg when pains in shoulders, arms and thighs became too much to bear. Down to 7mg after 2 weeks and will keep trying by dropping 0.5mg at a time, but I have never gone below 5 before it has reared its ugly head again. I know how you feel Purplecrow and I sympathise, especially with winter coming on. It’s dispiriting and seemingly relentless, but there are plenty of worse things we could have. That’s the way I look at it these days with many friends my age suffering serious heart problems, cancer et al.
We are so used to taking a pill and feeling better that the unpredictability of PMR completely shocks and unnerves us. The difficulty of dealing with ups and downs of illness and side effects of Prednisone rarely lets us simply get on with life. Patience is not my strong suit! Humility is another strength that requires constant work. Sometimes we just lose it!
As I watch my 95 year old mother and 13 year old dog suffer with confusion and daily decline, I realize we all just do our best and carry on and accept what we are given with gratitude.
I know exactly how you feel , I’ve had pmr since 2013 and never managed to get below 5. I am currently back to 8 at the mo and still have some pain and stiffness. Mark Benjamin gave a very good and humorous talk at the Pmr AGM yesterday and likened it to a snakes and ladders board. Up and down,up and down! We have to live in hope that it burns itself out one day. X
Saw my first sign of autumn this week, the grapes are changing colour. We used to make wine every year but the birds will probably have most this year!
Momentarily made me think of the beauty of autumn still to come ( I love autumn ) and reminded of the months of short dark days to follow. I will focus on the beauty of autumn.
Know what you mean about the flabby muscles, mine are useless at the moment.
Chin up! We all suffer these dark moments from time to time.
To cheer me up I did the " how old is your heart" questionnaire. The results were that I would probably not suffer any heart problems before I am 86, and I am 72 now.........I'll take that!
There was an article in the papers yesterday about the test. Apparently Dr Goldacre of Bad Medicine fame has been taken on as an advisor to the British government and said it was rubbish as all these people would take it and find that their hearts were much older than they were and would be going to their GPs in panic, he also questioned how good the questionnaire calculation actually was. I tried it several times with different input and I think I agree with him.
Oh yes - I'd decided that! It takes nothing into consideration for anything at all. My BP at 120/80 was deemed to be too high! I suspect it MIGHT work for perfectly healthy youngish person - but even so...
I was amazed at my result! The only negative things I had in that test was slightly high blood pressure and quite high cholesterin and my heart age came up as 90 ??? I’m 79 now so I can expect to live till I’m 85. I dont know whether to be 😀 or 😡!
Have you tried Mindfullness.........I did a 8 week course from a book, recommended by my GP. Mindfullness for Health. It taught me acceptance. Each time I feel low, I ask can you cope this second....the answer is yes of course.....so live today in seconds......and then it is over....and I have survived. The next day I treat myself kindly.
I am hoping to start a Mindfullness course on Friday - should have started last week according to the website when 3 of us turned up but no tutor. I hope it will help with depression.
I bought that book too on the recommendation of someone in the mindfulness group I go to. Mindfulness definintely helps me. So much so that when I was having a rant about something the other day to a friend, she said 'I take it you've not been going to your mindfulness classes recently?'. LOL and point taken.
Sorry you feel so low,l am grateful that l reached 70 without any bad health issues,but PMR has slowed me down and l dread the long dark winter days now that l no longer have my husband here with me.l do belong to the W l which l really enjoy also an over 50’s club,it is really important to socialise with other people when you live alone.l am very cross with myself for lowering my preds.,from 3 mg to 2 ,l spaced this out but ended up with a flare .l was OK on 3 mg but my doctor was pushing me to come off the steroids altogether.l realise that l was very fortunate to have reduced so low and l would advise anyone that is on a fairly low dose to leave it at that rather than end up having to take a lot more and even possibly ending up where you started.l try to achieve something each day ,l love anything creative and even if l only make l card or start a painting ,knit a Teddy hat for a charity bear (far too small for Tedski ) or sort out my plants,it really helps me feel much better.l do love the colours of nature but miss getting out into my garden when winter sets in,lt is so true that other people do not understand how PMR affects us,as we can look the same as ever,perhaps even better with less wrinkles thanks to the preds.Bright lighting as others have mentioned is a must ,it really does lift the ‘gloom’!At least we are alive and there are many who did not reach our ages who would love to still be here now.
I don't know whether this is any encouragement to you or the opposite but I've had PMR for 18 years now with GCA a later addition, and have never got below 4mg. But I live to tell the tale; I have been getting more tired lately, whether this is due to reduction from 9 to 8.5 and adrenals failing to wake up I don't know - could just be that I'm now 78. But I try to enjoy the small pleasures that we do still have - your tomatoes, the lovely clock I picked up for a song in a charity shop, the picture my daughter sent me of my grandson curled up asleep with the dog and so on. I'm not saying I don't get days of frustration - I certainly swear a lot more than I used to - especially as as osteo-arthritis is now also conspiring against me . But I have marvellous excuses not to do the vacuuming or ironing both of which I've always loathed. And now the sun is shining brilliantly so can make believe it's still summer while I can feel the sun on my toes.
I was diagnosed 10 years ago. Still on Pred is alone, currently 4mgs. I also have atrial fibrillation. 72!! How young😀 There are people I know, diagnosed about the same time,who are completely off medication and pain free, ? A bit more research needed.
Ugh I ask myself the same thing. Will i ever feel well again. Was diagnosed a year ago and at age 41 I am totally through with pain and being on meds. I hear ur pain and feel for you. Every day for me is a struggle from I open my eyes.
I hear you sister, we could be twins. Years for me as well with the unwelcome guest. Pain is one thing, but adding the flabbiness and the moon face, and the bruising just seems royally unfair. What to do? My solution to the horrible reality is to develop a sense of the ridiculous and try to laugh some of it off.
For example, my shaky vanity is propped up by my wonderful bathroom mirror that, in my opinion, makes me look great. The truth boldly intrudes only when I catch a glimpse of myself in department store mirrors. In this case, do not shriek in alarm, turn away quickly but not too fast or you’ll fall down due to the dizziness caused by your latest pred taper. Be careful because your furtive behaviour avoiding mirrors in public places may cause you to be mistaken for a shoplifter.
The pain…. the only good thing about pain is the really terrific set of excuses it gives us to avoid anything boring, too strenuous, tedious, annoying, etc. Give in to the perks of wheelchair assisted travel avoiding that long walk to the gate and meet the handsome airline employees who take care of this duty. Muscle weakness means you can never lift another heavy suitcase. Maybe Mark Benjamin and Tedski could be hired to help out.
The coming dark over the Pacific North West. I live there too and have come to love the misty light, the bird calls and sea smells. Ferry trips on sunny days, coffee is a marvelous cure taken in warm cafes while eavesdropping on wacky conversations and people watching, and just getting out can make us forget the grueling pain of PMR even for a little while. Remember that we have a huge advantage with this website, dear real friends who care about you and have intelligent, loving, funny advice and real knowledge about this devilish condition.
All my best to you dear Purplecrow, I hope we meet someday.
You sound like a person I would love to meet! What you have said is exactly my story...and its nice to hear the funny spin you add. I did ask for wheelchair the last time I traveled...my gate was at the furthest end of the terminal...and I just decided to be kind to myself and request help. A nice fellow pushed me and my bags about a mile down the terminal, and offered to remain with me until my flight arrived. I tipped him generously, and chuckled at me, being smarty pants, as I settled at the bar to wait with a nice glass of wine and my book.
This forum has been my lifeline thru my entire journey with this PMR stuff. I cant imagine trying to wander my way thru the confusion without the Wise Ones who have led the way.
This Pacific Northwest is a stunning place to live, I have Seattle to the south, Vancouver BC to my immediate North, the ocean on one side and gorgeous mountains on the other...something for everyone!
Very cheeky to step from a wheelchair to the bar! We will have to meet in Port Angeles one day, I'll be on the Coho from Victoria. Hope you are having a good day,
My heartfelt sympathies Purplecrow. I was diagnosed with GCA 7.5 years ago and started on 40mgs of steroids. After several abortive attempts I am now down to 5mgs but the havoc that's been wreaked on my body is, I feel, irreparable and like you I am SICK of feeling ill. Because I've been so inactive for the past eight years (it took months to diagnose me) my muscles have given up the ghost. I am housebound now with different 'agencies' offering me equipment/advice, all very nice people but no-one offering me a cure - like you!!
To cap it all, after a fifth fall at home I was carted off by ambulance to the local hospital who were very thorough in trying to ascertain the reason for my painful back/ribs. The only thing it did throw up was 'a mass' in my one remaining breast, later confirmed as cancer. I had been to by GP 9 months previously who said she could feel nothing amiss and didn't refer me on. My general health is poor (due to the GCA!) and chemo would be 'inappropriate' thank G so I am being treated with tablets to, hopefully, stop it spreading and to shrink it as well.
I definitely don't share this with you in any kind of a "you think you're hard done by" manner. Far from it. I haven't read any other replies yet but I'm sure the overwhelming majority of them will be sympathetic and I hope will bring you some comfort. If only non-sufferers understood, eh?
Though you won't know it, I shall think of you often in your attempts to combat this horrible condition and sincerely hope it leaves you soon.
Thank you for your kind thoughts...I send you an enormous amount of loving energy and wish I were close enough to give you a hug.
This silliness of getting older, and the nasty surprises we discover around innocent looking corners , is enough to justify getting seriously angry. But, we are both survivors, and so we keep plodding along the road, trying to understand that, which by appearances, cannot be understood.
So, my friend, lets hold virtual hands, and do this together.
And, please continue to be very careful not to fall. That is one of my worst fears, since I am pretty wobbly.
Thank you, thank you, thank you all. This has been so helpful. Been on Pred for PMR since Dec 2014. Started on 15mg then understood I needed to try and reduce. Worked my way down slowly and managed to spend this year on 4mg and able to potter with small daily jobs around the house, meet friends for coffee, go away with friends for weekends but people watch while they go off walking. Walking any distance at more than snail pace is the hard part. Not been round a shop to try things on for 4 years! I'm 68.
Thought the aim was to try to get off the Pred so tried to slowly come down to 3mg these last 2 months. What a disaster. All the aches and pains came back. Just had 3 days in bed. But reading all the posts decided to go back to 5mg, see if I feel better and more importantly, can do more. Then hey, just stick with it and stop trying to reduce. Not sure what my Rheumy might say.
But feel you have all given me a way forward. Maybe I'll never come down from 5mg, but if I can walk to the shops ......... and SHOP, what the hell!!!
You and I are arriving at the same place on the page. I'm getting tired of going gung ho into another taper , only to have the pain come creeping back, till there is no mistaking that I have dropped my prednisone level below where my body will tolerate.
Once I finally admit I need to go back to the higher dose, things settle down, and I have a reasonable quality of life...
For me the pred dose seems to be somewhere between 6 and 7 mg.
Several people who responded to this post stated that same thought, including 🙌🏽PMRPro🙌🏽, who has been my mentor through my whole journey.
As Mimi said, suck it up Buttercup!! It aint goin away....
Hi to all long timers. I've had PMR since July 2015. Started at 15mg Pred and each time my reduction reached 8 my GP ( never saw a rheumie ....good I believe) diagnosed a flare and put me back up to 15 mg. In Dec 17 I asked for further investigation into latest flare as pain was not evenly bilateral. Anyway, I had a much needed right hip replacement in May 2018 and the left hip will be replaced in October 2018. To give me some mobility and independence we have splashed out on a small mobility scooter....found one that cost about £360......if you can get your head round the "disabled" label....it is quite fun. I know not everyone has that sort of money to spend especially as I will only need this for a few months. But who knows what the future holds?
Hang on in there, you will get better! My story is very similar to yours and there were so many times when I nearly gave up but sheer b....mindedness and obstinacy drove me on! It took 6 years to finally get there and take my last (hopefully) pred and I have been in remission for 2 years now and count my blessings that somehow I found the resolve to beat it, also for every pain free day with energy levels still increasing. Don’t give in! Keep focussed on that light at the end of the tunnel even if it is just a glimmer right now! May the force be with you! Maureen
Thank you Maureen, there is hope and light at the end of the tunnel.
For today, I'm just trying to return to painfree (relatively) living...come tomorrow, or next week,...or next...whenever, I'm sure I will begin a taper again... but for today, its ok to sit stay.
That's quite encouraging, Maureen. There are times when we need all the encouragement we can get! 6 years - hmmm - at least that gives a goal to aim for. And it's good to hear that your energy levels are still increasing after 2 years in remission.
No worries, glad to be of help. I went through this on my own as I didn’t know about HealthUnlocked and there were no support groups where I lived so I felt very isolated. So I really do know what it’s like and the daily battle to win through!😊
Darling I had SAD terribly. I got a Lumi Lamp it was expensive and I had it sent from the uk to Australia. It’s been wonderful. I use it for forty minutes a day and you don’t have to look at it just have it in your view. It helps with sleep and mood in a natural way. I can’t praise it enough. Xxx
Sorry to hear you're feeling down. This 7mg to 6mg is a real pain isn't it....I'm struggling with that. I'm only 3 1/2 years in though but it feels like forever. I don't get SAD as I love autumn and winter but my OH does....I love Jane's idea of fairy lights and candles at 4pm!!! Might try that. Hope the clouds lift soon for you.
I hear you, I could have written the same post. 6 years now for me and although I came of steroids last year, life was too difficult and I've had to go back to a low dose of 2.5 which I have to up to 5 from time to time eg to go on holiday. I comfort myself by thinking there is some progress even if not a straight line progress, I'm better than I was 6 years ago. This time next year Rodney, maybe?
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Barely 5 years is still well within the median of 5.9 years. If I were at 7mg both I and the rheumy would be ecstatic. 
Hope the clouds lift soon for you.
Sick and tired of being sick and tired
Sick of being sick
Done it again Will I ever Learn. 
Advice please - I have GCA and an onset of different symptoms. 
