......I started pred one year ago today. Start dose 20, now 9mg.
A failed taper ordered by GP. Have seen GP 3 times since diagnosis.
A failed taper instructed by consultant. Have seen her twice. Multiple blood tests to rule out all sorts.
Now going down at 1mg per month.
I’ve gained a stone in weight, but am happy with that (now have some boobs ) I lost around half a stone pre-diagnosis. I’m keeping my weight stable with carb-care.
I’ve lost a lot of hair, but the loss now seems to have slowed after a drastic cut.
I had acne at 15-20 doses, but now resolved.
Facial hair, the moustache! Definite increase, but nothing coarse, so bleaching helps.
Finger nails are a disaster, split nasty things. Toe nails seem unaffected, possibly growing faster.
I’ve had a dexa scan with good results. That shut the doctors up re AA.
My BP has been monitored by my pharmacy as the surgery didn’t want to do it And those unequal BP’s led to a contrast CT scan of my aorta, which is neither dilated nor occluded, but I have gallstones and liver cysts. (Neither attributable to PMR or pred)
Plain pred caused stomach irritation. PPI bloated me. Zantac gave me the runs. Now happy on GR pred taken with yogurt, and occasional gaviscon if I have too big an evening meal.
Calcium and VitD when I remember, I’m bad at that. Prunes, lots of milk and cheese. Oily fish consumption greatly increased. Red meat almost none. Sugars much less, and carbs are brown. Salad intake up.
Opticians at the beginning, after 6 and 12 months. Eyesight not so good. New reading glasses last time. New distance specs this time. Cataracts beginning, but otherwise eye health good. Have transition lenses as protection.
Oral thrush multiple times. The other end twice. (Due to AB’s)
I’ve lived with cardiac arrhythmia for years, it’s possibly a little worse, and have had the pounding heart, but both things have reduced with pred dose. Pre pred my heart could gallop at 150bpm after a short walk, but that stopped with pred.
A bit breathless at times, stairs, upward slopes, and when sitting resting! Can manage a flight of stairs in relative comfort, but 2 flights kill my thighs, just have to pause and regroup. I can walk 2 miles at leisurely pace. Upper arm muscles will ache with repetitive actions, hanging washing, hoovering etc. Housework is very minimal now. Hubby does main shop as that’s beyond me. I do little bits with my new trolley cannot carry bags.
Brain meltdown and poor memory has irritated me beyond belief. Anxiety levels are definitely up, re my health and life in general. I’ve cut many ties, the Toxics and ‘needy’ people. I keep to those who try to understand, or just have myself or family for company. It’s just easier that way.
Fatigue is a major frustration, but dare I say it’s eased a bit (until pred reduction week when it’ll come back full force).
I think things started around 2 years ago, maybe longer. 3 ear infections to which I’m not prone. Painful throat. One sided tonsillitis. Swollen neck glands. But nothing added up at that point.
18 months ago: Niggling shoulder pains, hips joined in, I began to suspect PMR.
There was a weekend last Feb when hip and shoulder joints felt gritty, painful, and I was fluey. I couldn’t bear to be still, had to move, but had no energy to do so. It all went downhill from there.
Last March: barely able to walk. Thighs would scream after 3 stairs. Could lift arms up (mostly) but it was a killer. Woke at night and had to plan how to turn over. When I got up in the morning (often 3-4am) I could barely stand for burning pain in thighs. Upper arms constantly aching and feeling ‘pinched’.
So there we are. What a difference a year makes. Side effects aren’t nice, but they’re manageable. I’m not me, but I’m hiding in there somewhere threatening to come out. I’m nearly 58, which is marvellous as I’m sure I was 90 a year ago I set myself age 60 to be over this nonsense, but I’ve learnt that I can’t dictate. However if I’m at 5 or below in 2 years time, that will be good, and I think achievable, with luck and a fair wind behind me.
Clever people did say, you’ll look back in a year and see how far you’ve come, which at the time I found hard to believe, but hey! They were right
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Happy anniversary doesn’t really apply, so how about ‘Congratulations! One year down!’ Such an interesting narrative of your journey! I’m coming up to my one year in May so as I read your account, I was thinkin, ‘yes....yes, me too...yes,....oh, thank God, no...etc....’ i can add feeling like a human pincushion, a toe that likes to cramp, and at times feeling like a sandbag was implanted in the back of my head. And a way of walking that is so foreign to me. But, like you, we get our “One Year Button” and should wear it with pride. Congratulations and Well Done!
Forgot the cramps, pre and higher doses of pred. Claw hands (mainly driving) and calves and feet (mainly at night) Both sorted with daily banana. Now not a problem.
‘THE walk’ Ha! Yes. The stiff legged waddle. It could be a dance craze with some clever sales promotion
Occipital sandbag, no, must be a GCA thing. Doesn’t sound pleasant. Has it gone now?
Yes! THE WADDLE! I was waddling down the hallway at work this week and a lady about my age waddled past me going the opposite way doing the same walk. I was sooooo tempted to stop her to ask her if she had PMR. Sooo tempted.
I KNOW! I was afraid it might have been like asking a lady when her baby is due only to learn she’s not pregnant. How awkward! “Your waddle.. (clearing throat), I ahhh mean your lovely walk seemed slightly familiar”. 😳
It’s useful to do this sort of review and I can relate to so many of your symptoms and I share many of them in others, my pain pooled in slightly different places. Sometimes you just get so fed up of having a chronic disease but this sort of assessment shows slow but definite improvement. I think you have done very well in one year. You have learned so much about self care and finding a way to live. You haven’t had very much medical input and most has been a disaster. Like me you are cared for on here and by yourself mostly. You also find time to be a marvellous contributor on here, helping others loads. So all in all 👏👏👏👏👏👏👏
I kind of prefer to be on my own with the forum’s help. My GP mainly talks nonsense, and I get stressed waiting for appointments. But I do need the pred, so put up with it for now. Consultant is ok, but only one of her spread thinly. That’s the NHS for you.
I get so stressed rehearsing my conversation, over and over again, in the waiting room of the doctor/rheumatologist... until I realize people are staring at me, and what I thought I was doing in my head, I am actually muttering more loudly than acceptable.... people start looking around to see if they are in the correct waiting room, or whether they have inadvertently wondered into the mental health section....
Thought of you today caterpillar , whilst shopping. I knew I needed three things: gaviscon, toothpaste and....... Oh blast! What was the third thing? Gaviscon, toothpaste and......Dove shower wash. That’s it, shower wash.
Yup, you guessed, I did that all out loud and looked up to see 2 ladies peering at me 🙎🏼♀️🙎♀️
That is such an interesting account. Well done. You've progressed so far in one year. I feel very lucky that I've managed to escape many of the side effects you described. Perhaps I need to pay a visit to the opticians again though. I'm not always great at remembering to wear my sunglasses. My hair is pretty dreadful and I have hamster cheeks, oh yes, and the emotional effects... Maybe I haven't got off quite so lightly!
The main thing is that you have a very positive and upbeat outlook, so that will equip you to cope with the continuing steroid reduction.
I've gone back to work after 10 months away, so for me, that's the greatest achievement. There were three people in our team, but one has just left and the other is unsupportive. Meanwhile, my manager is so pleased that I'm "better"! Really...??!! I'm just about coping and hanging on by my fingertips! I'm certainly far from "better".
Life is crazy, might as well try to be positive, but there are days! Urgh!
You have my admiration for getting back to work. I’ve not worked for 2 years. I’m possibly maybe thinking of finding something, if I can continue to improve. But it will have to be ultra stress free. Little responsibility, no making decisions about people’s lives, no bringing the worries home. That’s probably what got me in this state in the first place.
Do be careful, I hate to hear that you’re just clinging on at work. I’m sorry your colleague is unsupportive, and your manager so unrealistic Can you arrange a supervision session, or appraisal to enlighten her?
Very true! I’m meeting a recently retired friend next week, and we’re going to chat about pensions... She’s determined to get me to retire, especially as I’m always moaning about my colleague and manager. She really “gets” PMR too.
Couldn't agree more. It is also surprising that even if you think the lower income will be a strain - you spend loads less when retired. You don't waste food as much because buying small amount fresh is the reason to get you out for a short walk (even if you have to drive there to do it) and you cook from scratch instead of buying ready-prepared stuff. You don't need fancy clothes for work. You don't have to COMMUTE!!!!
OH was on a pretty hefty salary before he retired and I still did a fair amount of translation. His NHS pension is relatively low as he he'd been there only barely 20 years. He'd sat and done spread sheets for months and months to be sure we could manage until our state pensions arrived - and I suspect now we could have gone at least 6 months sooner. Which would have meant our house would have sold for a lot more too...
Ah well - it is what it is. But retirement is definitely A GOOD THING.
I had a meeting with my manager before I started back at work, and she was unrealistic then, despite the recommendations from the OH consultant. I’m not sure how much longer I’ll cope, especially as I get to lower pred doses. I’m currently 9mg/10mg on DSNS. The colleague couldn’t get her head around it, so I brought in my printout with all the doses written out.
I 'm interested in these posts as I am toying with the idea of trying to work part-time. 52 years old, 8months into PMR and going backwards, from 10-15mg. Full time work in Sales, - very busy and always a challenge. Fortunately, I do have a great employer and benefits. I do not usually take time off for anything. But I am fed up with pushing myself though my days, and not able to give myself the rest, or anytime to feel better.
It does require care to go part-time: you risk doing the same amount of work for half the pay. Which isn't exactly the idea! Obviously it depends on the type of post...
Ah yes - ‘better’ - that rings a bell! I often get asked ‘how’s your shoulder problem - better now?’..... (and that’s from a close relative!) If only it were that simple😂
Congratulations all you've survived and how far you've come in just one year. Please remember there is no rushing to the finish line. That will only put you back towards the beginning. Did someone on this forum say PMR is a bit like the children's board game, Chutes and Ladders?
Loved this! So good to see how far you've come... Congrats! You did good kid!
I hope the upcoming year continues to see you getting healthier and stronger! And by this time next year, you'll just pop into the forum to give us your update and then be running off to some exotic place, to enjoy life and have fun!!!!
Quite a journey...and despite everything that you have had to contend with during the last year - you have come a long way! As someone just starting on my pred journey I appreciate that there are likely to be a fair few obstacles ahead and I'll have to learn to adjust accordingly.
I've had ME for a number of years and am used to having to deal with the vagaries and unpredictability of a chronic disease. But I am finding adding PMR to the mix very difficult to deal with - let alone get under control.
I wish you nothing but better days in the year ahead.
I've come to the conclusion since being in this group that PMR/GCA only chooses the tough ones to reside in! By that I mean that many 'non-sufferers' of my acquaintance would be moaning and groaning and taking sick pay, whereas the majority of contributors here are still managing a 'sort of' normal life- despite having so many ongoing problems to contend with.
I am only just diagnosed, and was amazed and delighted by the speedy relief offered by 15mg prednisilone after nearly 4 years of struggling....but if I actually sit and think about it I have so many pains and restrictions still. (without those that pred will undoubtedly bring!)
It is so hard to pace oneself, friends and family, work colleagues really do not understand, and when you say you are feeling better than before it's taken as meaning you feel good...very different!
Yesterday we had to collect a lorry load of hay for our horses, since the laws changed my daughters are too young to drive an HGV without a test, I have 'Grandmothers' rights so am the driver- and I would usually carry my share of the 50 15kg bales up and down the ramp and stack them, even if every fibre of my body was screaming. Post diagnosis and listening to the collective wisdom in this group, I stood my ground, aware that I would pay for it today otherwise and probably moved only 10 bales each end, then went off round the farm with my 2 year old grandson and let them do the rest. And I have also declined to be included in the paintballers celebrating my 'baby' boy's 30th today, I will take grandson round the zoo instead. It feels totally alien to me not to join in, but this may now have convinced my children that I do actually need a bit of 'looking after'.
Maybe it is that toughness and unwillingness to give in that leads us to this condition...we tolerate physical and mental stress for way too long and our bodies just say no in the end and turn on themselves in despair!
p.s pleased to report I can actually walk down the stairs this morning!
I agree totally "that toughness and unwillingness to give in leads us to this condition...we tolerate physical and mental stress for way too long and our bodies just say no in the end and turn on themselves in despair!" - unfortunately we only discover this when we're on the rocky PMR road. Good on you for slowing down and doing the grandson to the zoo option, that's me next week!
Pred needn't bring many, if any, restrictions. It stops me doing nothing I want to do (emphasis on want). It is an excellent extra for "no, can't do the bales" though - you have a get-out clause: "I can drive, that's my contribution" and save the tendons/muscles for another day.
Well done for surviving the year-especially with good humour intact (with us😂).
The old thrush might account for your fingernail. Any Wicklow style skin too? I always know when Candida has got out of control when I nails and fingers change. I usually try canestan cream on my finger ends and if that doesn't work I have to take pill.
Hadn’t thought of fungal nails. But don’t think so, no discolouration, soreness or red bits. Think they’re just overly dry. Never occurs to me to use hand cream, so my own fault.
Me too! Your words could be mine (with a few, not many, differences). I told the hub "I have to walk like john Wayne, or it hurts" and he thought I was bonkers. My next taper discussion is tomorrow? Fingers crossed. I wish you well for a pain free year ahead.
I (in theory) should drop to 8mg tomorrow, after 4 weeks on 9mg. But I’m not going to. Headaches, R hip and L shoulder pains through the month, which I’m hoping can be resolved by chiro. Plus I figure ( from past experience) I could have a couple of days pain after chiro, so if I reduce I won’t know which pain is which.
Do you actually discuss reductions with your doc? It would give me a brilliant excuse to slow my taper down, waiting 3 weeks to see him! But as my bloods are always normal, and he never tests them, it would be pointless. I shall discuss with the dog, she has more understanding.
I have telephone consultations. I thought the bloods were done with a cholesterol check last week but at trip to the locum (think willy wonka and the choc factory - me being charlie - and I got the golden ticket from locum - antibiotics, full blood test booked, cream for chelitis and an X-ray for chest). And then you will understand that I too, talk long and hard to the two shiatzus with better results on the empathy side of life. Now throw me a bone darling and I'll disappear back to my kennel for a rest. 🐾🐾🐾🐾🐾🍗🍗🍗🍗🍗🐶🐶🐶
Yes, yes and yes, with the addition of lack of sleep. Very useful to step back from the day to day coping with PMR and look at the positives which will encourage newbies as well as us old hands! I can remember being firstly relieved on getting my diagnosis followed by utter confusion, ignorance and panic until I found our community - thank you for your input and good luck with continued reductions.
I did have some sleepless nights at higher doses, but now sleep like a log. I’ve let myself drift into late mornings and late nights, which is my norm throughout life I think, and something that happened naturally if I was on holiday or off work for some reason. Now I don’t work and don’t have to fight the good fight to get to work, it suits me better. I stick on a radio comedy as I go to bed and am asleep before the half hour is up.
I hope my post offers some hope to others. And yes I dread to think what state I’d be in without this forum of experience. Left to my GP I’d likely be mad(der) by now.
Brilliant summary. Thanks for posting. So reassuring when another sufferer lists the side effects we are experiencing in so much detail. It makes the weird and scary feel more normal and explainable. I too am one year on and 59 but a sudden resurgence of symptoms has made me up the preds a little and I think they need to go up a little more.I was definitely 90 years old last year.I am concerned that this stiff and aching person is actually the real me and that the feeling of wellbeing I have enjoyed on high preds was masking what I should learn to live with in future.
Thank you. Yes I recall reading hundreds of threads pre diagnosis, and just after, to compare notes. Finding that ‘bilateral shoulder and hip girdle stiffness and pain” was not the sum total of PMR was a relief. One thing I forgot to add to the OP was the rib and boob pain, and yes when I searched here, there it was, a common experience. Phew!
Cling to those days when you felt well. I had a lovely spell at 20 and then again in the summer at 15, when I felt in control. Then I flared in December and back to 15 from 10. I’ve not felt properly ‘in control’ since, but am hoping the extra pains will be dismissed by chiropractor next week. Stiff and aching is not the real you, you will emerge again. When I flared I jumped up 5mg and came down quite quickly to where I was ok before. That helped. Just the longer term R hip/L shoulder stuff clings on. Spring is on the way here, a few days of sun and I feel more active already. Good luck.
Hair thinning, try Folic Acid, but do check with the Pharmacist that it is compatible with every other medication you are taking. Mind you should do that before you fill any prescription and buy OTC or Homeo, they know the rest don't.
Well it MIGHT have been better without PMR? But the light at the end of the tunnel is twinkling a wee bit brighter 🌟
I have much to be grateful for. Sons both happy, their partners are lovely. Hubby works hard so I don’t have to, and helps me at the weekends. Plus he doesn’t moan at the lack of housework A good group of GF’s who help each other with our various decrepitudes. Life could be much worse.
The girl done good, as they say, well done you! I admire how much you've learnt in such a short time of your illness. I wonder how different it might have been if I'd had this forum in the early days of my diagnosis!
I recognise so much of this Soraya, as others do. I'm 2 years down the line and have had 2 flares - the first at 12 months and the second in the last month. I know PMR has a mind of its own, but I put the first flare down to tapering too quickly at 1mg / month. Now I'm tapering at 0.5mg / month, so I'm not sure what's caused this recent flare, other than that's just the way things are. I'm now on the dose of pred I was on at 9 months after being diagnosed - grrrr!
However, as you have described, in spite of this I'm probably only 80 years old instead of 90! (70th birthday coming up next month!)
Exactly what I've been pondering - around 6 / 5.5mg. I've added 2.5mg since Good Friday, with GP's blessing, so I'm on 8mg now and shoulders are easing. I'm attending a Rheumatology Nurse Clinic in 12 days' time, so plan to stay on this dose until then. (Nurse clinic, as Rheumatologist (Sarah) has no appointments until 2019!)
Should I be asking questions about my adrenal function, or just be a more patient patient?!
Both times? If so, no. You have arrived at your Holy Grail, the thing you were looking for: the lowest dose that manages YOUR version of PMR as well as the starting dose did. For now - it doesn't mean you won't get lower, just not yet. If the flare happened at 6mg, once the flare has been sorted then you will probably get to 7mg, possibly 6.5mg but don't temp fate by trying to go any further or you'll have your third flare.
Thanks for that. I was thinking that was the case and planning to go VERY SLOWLY from here. What do they say about once is enough, twice is too much, but three times, NO THANK YOU!
Feeling down today about not being able to get out and help Dave in the garden - usually my role, so very frustrating! What did I say about learning to be patient?
Thank you and PMRpro for your concern, which is much appreciated. I have just been out to see how he's getting on with a major pruning job on a bank that I completely cleared 4 years ago - pre PMR! It slopes and requires us to have the agility of a mountain goat! Now planted up with spring bulbs etc, but an invasive shrub is in danger of taking over again.
Anyway, I've brought a shirt in, off the line, so I can iron that for him to wear for work next week. So there's something I can still do to be useful, but only one shirt at a time.
I've spent the morning working on admin for the Ilkley meet-up - around the new data protection legislation that's coming in next month, so I don't feel totally useless.
When this flare is under control I plan to do 5 minutes at a time with the secateurs, on the accessible parts, then an hour's rest!
What hit me today was the fact that the sun's shining and in pre PMR times, I would have been out 'doing' things all day. The winter has shielded me from that.
Pacing really is the key. During Lent I made it a daily task (true penitence this, actually) to tackle the clutter in a small room which is a sort of study for me. I just told myself if all I did on a given day was recycle some old mail or shred some papers, that was still valid. Of course some days I did a lot more than that. The six weeks went by and I now know what's in the room, it's reasonably well organized and I feel a whole lot better about it. There's still some sorting and discarding to be done but that lot is now in one box not scattered throughout. Had I tried to do it all in one or two days (possible for a healthy person) I'd have been flattened and never finished.
I often feel that gardening is like outdoor housework. I do like the results, but the process I would much prefer to leave to others!
Yes, you’ve come a long way! I can relate to increased anxiety, memory issues and cutting toxic people. I’m at 9 mg from 25 mg starting dose. Took a lecture on kindness since my patience has become short! Consciousness helps!
My patience has never had a long piece of elastic!
Actually no, I’ll correct myself, I have a goodly dollop of patience in certain circumstances (children, elderly, sick). What I don’t have is time for stupidity and ignorance in those that should know better.
Not everyone deserves your patience. The fault will not lay entirely at your feet. But yes, kindness repays. A random act of kindness can cheer the heart.
Congratulations on one year behind you- you sound like you are progressing along and a lot wiser in part to this forum and the sharing of advice and stories from the experts down to the newbies. I am 9 months into the prednisone and 58 and find so many parallels in our stories. That is very comforting. Like you I can’t work and have felt guilty about that. I just know I couldn’t even put in a full day let alone string 2 days together. The more I give my body the rest it craves injected with some light short duration activity and avoiding sugar and carbs as much as possible the better my day looks. Some days I’m not so disciplined and yes my body shouts back at me.
Thanks for sharing your story. It made my day as I start my morning here in Canada with my morning tea looking out across the snow covered lawn and deck.
“I just know I couldn’t even put in a full day let alone string 2 days together” No nor could I in all honesty. Just done my first stint in the garden, 45 minutes later I had to sit with my cuppa. Pooped! Another 45 minutes and I’ve called it quits. All that bending up and down, vague dizziness, huffing and puffing. No, I’d be no good in a workplace where continuous work is expected.
Hips and finger now aching. Finger? Yup, some dopey wasp stung me!
Gardening - lol, I’d have to shovel a foot of snow to find the garden, but like you I’d last just a short time. No dopey wasps here yet - I guess that is the glass half full way of looking at it😉
A great resume of your experiences Soraya and so appreciate your posts to others - they are so helpful. We're all so individual with how PMRGCA affects us but really good to document, as you have, progress that has been made- it encourages us as individuals and others.
Thanks Jackoh. I hope it is a bit encouraging. Yes, individuals, so many aches and pains, effects and side effects. All so different, yet all waddling through the quagmire of PMRGCA. But it’s nice to waddle together
Eat jelly for your nails and hair. May the next year be smoother than the 1 you've just had. Many of us can so identify with the trials you've had. I am eternally grateful for this incredible forum.
Got out today and feeling really good despite testing my chocolate theory out last night lol ate half bar Lindt 80% dark chocolate and not a bother this morning. Also downloaded yogaburn (the restorative one nice and easy 🙈) so onwards and upwards 🤗 thanks for asking x Hope you are having a lovely day x
That’s fabulous 2.7km! Em ... re the yoga burn ... did number 1 of the restorative one... not that easy 🤭 but easy to follow and good teacher...will only do what feels right ... lol walking in the morning 🤞
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) I lost around half a stone pre-diagnosis. I’m keeping my weight stable with carb-care. 
And those unequal BP’s led to a contrast CT scan of my aorta, which is neither dilated nor occluded, but I have gallstones and liver cysts. (Neither attributable to PMR or pred) 
I set myself age 60 to be over this nonsense, but I’ve learnt that I can’t dictate. However if I’m at 5 or below in 2 years time, that will be good, and I think achievable, with luck and a fair wind behind me. 
Can you arrange a supervision session, or appraisal to enlighten her?
MRI today.. just curious 
Just had my latest Rheumatologist appointment: confused and a little scared.
Is it just a flare or something more sinister
Another major thing the medics don’t realise about pred.
