Hello,
Today I had to prune the rose bushes and the bush roses, in a terraced front garden. However, I was disappointed to find that it was hard going, because I felt weak,a bit unsure and a bit wobbly. I’m 77 but have seen older people gardening with gusto. I used to do a lot in the garden and last year I felt a lot stronger. Could it be due to the steroids, or lack of calcium, I have been on 7mg prednisolone for quite some time ? Any help would be appreciated.
You are a year further down the road with a debilitating chronic illness - and the task of pruning is one that really doesn't sit well with PMR as it is repeated actions for the same muscles.
Thank you PMR, I will take it easy and do a bit of gardening at a time. I have to do it, because my husband is recovering from an ankle fusion and a bone graft. I could employ a gardener, but the last time we tried we were so frustrated that we ended up doing it ourselves !
Combination of your illness and the Pred -there are many comments on here about gardening -and how it wipes people out. Need to do a little at a time (and I mean a little), then have a rest -and repeat….
..and don’t judge yourself against others - even those with PMR let alone those without!
Most of us gardeners think we need to do it all in one go -we don’t! Found that out with my bad back….
Thank you Dorset Lady. I do have osteoarthritis in my back and stenosis, but it’s not usually so bad. Sorry that you have had trouble with yours. I will do a bit of gardening at a time, maybe the wobbly legs will toughen up !
Mine’s lumbar spondylitis-long term -can do so much (walking/gardening whatever) and then have to sit -5 mins is usually enough - and then I can go again.
Such is life!
On dear, mine is just a doddle compared with yours. Backache is miserable. Well done for still getting on with things.
This is something I have learnt to do in the past few years too. Changing position every 20 minutes or so is important, before things seize up!
well I’m nearly 85 and have gardened all my life. I I only have a small garden now but most things only involve my right arm/ hand!!! And it’s the repetitive small movements that affect me! Drives me nuts.. and there are those 90 year olds who look as though they don’t have a problem!!! But they don’t have pmr and steroids!!!! So I’m on 5 after nearly 2 years and am experimenting with 1 mg per 6 weeks. !! Next week to 4.. and if I’m collapsed on the sofa.. I’ll make it a half mg! Onwards! And thanks all!!!
Hello Bedwell,
I’m on 7mg and should be feeling quite sprightly. Encouraging about the gardening.
I love my raised bed!!!! Just eating delicious spinach which has come up again this year and got leeks potatoes carrots …. Used to have a huge veg garden.. moved.. then allotment… too much fir me… now accepting?!?!? I think! That raised bed is right fir me now! My husband died 20 years ago! How lovely you still have yours around! To hug( and shout at!!)
I have a raised bed on legs at the bottom of the garden and my broccoli is going in there. Your raised bed has inspired me. Sorry about your husband.
I have been coming downfrom 5...I hope you are using some very slow method for tapering (DSNS for example). It has taken me 6 months to get from 5 to 4. And often I feel more ill than ever (but no pain)..stuttering adrenals. Good luck with your PMR journey
glad to hear someone recommending taking( uncoated) pred at 8 or 9 in morning with breakfast! The idea of waking myself up at 2 am does not appeal!!!
Hello again,
I take coated pred between 6 and 8 a.m after formerly having taken it at 2 a.m. Taking it with breakfast agrees with me, rather than having interrupted nights. Whether this was a good decision, I don’t know, I suppose it’s just trying to do something that suits you 😀.
It depends on the person and the 2am time is the ideal. The earlier you can take it in the morning the better if your mornings are not so good but if you are a person for whome the effect lasts the full 24 hours it doesn't matter what time you take it - and be grateful
I want to try the 2am time. Sorry about this silly question - do u have to have it with some food ? My memory is horrible now.
Ideally - but doesn’t need to be a lot -a spoonful of yogurt, a plain biscuit, a small/half slice of bread.
I tried the 2am dose and while it addressed my morning stiffness I found that getting up at that hour disruptive and at times I slept through my dose, dropped pills on the floor (which were found after a day of stiffness), and difficulty getting back to sleep.
Splitting my dose and putting the evening (11pm dose) of uncoated pred into empty enteric capsules worked very well. That way the medication was on board by 2am and I didn’t have to get up at that hour anymore. I take my second dose at 11am. No morning stiffness and better rest at night. It really helped because I was one of those people who did not get a full 24hrs of relief with one (morning) dose.
To each their own…we all have to try what works for our unique bodies, metabolism, bioavailability, etc.
There are advantages to that 2 am timing. Breakfast pred was my usual time until about 18 months ago. Found 2 am helped when I was having a really bad flare. It worked out okay, never had trouble going back to sleep - had everything ready so didn't have to think! Later I tried to go back to morning again but symptoms increased slightly. Back to 2 am for many months, and recently have started with breakfast timing again; so far it seems to be working fine, which is promising, and I have to say I'm more optimistic about successful taper than have been for quite a long time. Currently embarking on taper from 1.5 to 1. In early 2022 I was frequently taking as much as 8 mg to deal with the flare.
you might not have had trouble getting back to sleep as you obviously didn’t have throbbing knees and feet!!!!anyway good that morning is working niw!
I did have an extremely painful shoulder, which I'd blamed on OA but it turned out to be PMR symptoms! No, I just wanted to let you know that the timing is actually more effective for dealing with symptomatic PMR. I was able to taper better because the symptoms were controlled by the time I got up, rather than having to be mopped up during the early half of the day! Just something for you and/or others reading the thread to tuck away for future reference if needed. I do have to say it's been nice the past two weeks not having to get up and take a couple of pills but at the time I needed it, then it was the right thing for me to do.
Hi Heron. I've been taking 32 mg around 9:30PM and then off to bed around 10. So far working quite well, although I can tell the dose is beginning to wear off around 9ish, but not intolerable. Sleeping through the sweats and shakes and considably less fatigue throughout the day. I'm due to taper down to 30mg on May 1st. We shall see how that goes. I actually have a phone consult with the unreachable Rheumy on May 2. I believe it's an annual though, because I first saw her in May of '22. There are so many things to discuss during a phone appointment, however. I guess it's better than nothing. 🙄
great to be down to 1.5. Maybe one day? Or not as the case maybe !last time I had pMR in2017 I came off pred inn6 months! Abd didn’t have a sign again until 2nd Pfizer jab! No question. Which is why I won’t have any more jabs Thankyou. !!!!
Ah, well I can top that! My taper from the flare was never getting anywhere until I had my first Shingrix vaccination and although it remained very slow it has actually remained fairly constant and reliable since. Probably got a bit of a boost from a Moderna booster as well.
Just further evidence that we are all different....
It's the prednisolone, I'm 74 and been on them for a year starting off with 60 mg for most of the time but now down to 30mg. My poor garden is a mess, I just haven't got it in me to do it, if I stand in on place too long my legs start shaking and I have to sit plus my energy level is rubbish
Thank you Nc. It's helpful to hear this. After having taken on arduous gardening jobs in the past, digging, lifting etc it is rather frustrating to feel as weak as a kitten and have wobbly legs. Normally I love gardening, but I now take breaks and have resolved to do a bit at a time. In the past we tried a few gardeners, but found that they did next to nothing in two hours of more. In the end we found we accomplished more ourselves. The situation is worse now, but doubtless by doing a bit at a time things will get easier 😀 Sorry about original end comment it was addressed to Flutterbles. 👀
scarcely manage 10 minutes in my garden...it's a complete mess...once a year I will bring in someone to tidy it up...otherwise I have to leave it. Unfortunately can no longer plant...different priorities. Surviving being number 1!
Though I know how you feel AF, I have beenamazed to find visitors admiring my garden with its high grass and escalating weeds. Very strange, maybe they thought I had invested in a wildlife garden 👀.
I have been a keen gardener. Now more keen in my head than body. Feeling ok is more important than garden looking amazing to you. Your visitors have confirmed that! We can only do what we can. Blind eye, as I have for dust in the house, works wonders. I try to just have little forays into the garden and mix the jobs up. Frustrating, as it is good to finish one thing, but it does cut down on the repetitive stuff in one go.
Blind eye, as I have for dust in the house, works wonders.
Literally in my case 😂🤣… and yes I use it often 😉
😂🤗
I’m considering that …. 😳 … certainly on one particular patch of gravel…
Sunflowers love gravel it seems.
We have lots of bee meadows around our village which are just left all summer to get on with their natural progression. Tourists love them and so do the insects.
Our neighbour leaves the centre of his lawn free for wild flowers. Have noticed that the bumblebees are massive this year.
I have gone downhill in the last year or so. I have bad days, sad days and wobbly days . I garden on the bad and the sad , but don’t do it on the week wobbly days. On the bad days I take painkillers before I actually start. I am sure that helps with the end pain at the end of the day. I know I should find a physically easier pastime, but I have been playing in the dirt all my life . I love it . I am feeling very geriatric now tho. Grrrrrrr
Hello Flutterbies,Don't feel geriatric it's just the illness. I agree with the Grrrrr. Have just broken all the rules and taken another steroid. My backache has nearly disappeared and my head is clearer, so it looks as the polymyalgia infection had increased. Disappointing though as I had hoped to decrease, not increase my steroids 👀
r. Have just broken all the rules and taken another steroid
Whose rules? -not the rules of logic and QOL.. nor ours (at times)..
😀.
Using a pair of secateurs really hurts. Take breaks.
Thank you whitefish. Helpful advice.
Same age as you and I have a similar experience. I have always maintained my garden but have seen it decline as I have been able to do less and less and now have reluctantly employed a gardener. It does mean that I can now potter and enjoy whilst the heavier work is done for me.I have a kneeler/stool which means I can rest as I go.
Amusingly the last full on gardening I did was when I was on 60mgms pred. I was out in the garden all day with my wife telling me to have a break. It ended up with me climbing on a low wall to prune a jasmine-missing my footing and taking a nose dive onto a brick path. Easter Monday was spent in A&E with a broken nose.😊
You certainly had an active life Teekay 😀 though I bet that broken nose was painful. I've raised my steroids today to see what would happen and amazingly my bad back is less painful and my.head is clearer. Rather naughty of me, but certainly worth it for now. I'll take it easy with the gardening though. Thank you.
I know the feeling. I'm 60 years old but have had to give up almost all manual labour. When I force myself to mow the lawn, wash the car, or clear the way for the sceptic tank to be emptied, I'm stiff and weak before I start. The fatigue builds from the outset and I get out of breath. I sweat profusely, no matter how steadily I plod. I begin to feel unsteady and have to take care not to trip. I lose posture in my back and hunch over like Quasimodo. If I use a spanner or shears repeatedly, my hands cramp, locking my fingers across the palm so I have to bend them back with the other hand. After 90 minutes or so, I'm spent. I lie flat for an hour until I have enough energy to shower. Raising my arms to wash my hair is sore and tiring. My upper arms would stop just above the horizontal before I exercised: now they won't even reach the horizontal. The payback starts now as I take to bed: if I sit upright, my back and neck are too weak to hold my head up. The muscle pain is such I can't get comfortable. Sometimes I writhe with it. Often a headache will have come on gradually and I know it will turn into a migraine if I don't ease off and act, so I take dispersible aspirin before the eye pain gets too bad, usually in my left eye. Penicillin and and ibuprofen help, but only take the edge off. I have been off prednisolone for 3 months, now.
I know you have a lot of other issues, but have you checked following -
A .. that your PMR hasn’t resurfaced, and
B .. your adrenal levels
Hi! Thanks for replying. Both checked. Both normal, just like all the blood tests and the PET/CT scan. Duloxetine didn't help, either, so I'm on no medication now (except for my atopy). I meant paracetamol, not "penicillin" of course. I make really stupid mistakes like that when I'm fatigued. I usually spot them before I hit REPLY, but lunch was ready and I didn't check. I'm allergic to penicillin.
Sounds awfully as if the PMR Is still alive and kicking - albeit gently, but the inflammation has built up again
Hi! Thanks for the reply. According to 2 NHS rheumatologists, I don't have PMR and never have. They say I do not have an inflammatory disease, despite being on 6 medications for atopy, which is an inflammatory disease. My GP says I have "an unknown disease" and is denying me any further steroids, which help, because "everybody feels better on steroids". He says I can't try a non-steroidal immunosuppressant to prove this one way or the other because the consultants say no. I have given up on the NHS and, since I'm bedbound most of the time and not spending my pension, am going private.
WHY do they say you don't have PMR? What dose of pred have you been on and for how long?
Was the PET-CT done when you were on pred?
They say I don't have PMR or any inflammatory disease because all the blood tests and the PET/CT scan (which I tapered off prednisolone for) are normal . Then there's the fact that my symptoms came on very gradually from well before 50; and I don't get full remission even at 30mg. One of the things I plan to investigate is what happens if I stop all my atopy medication. I have a hunch the antihistamines confound the blood tests without preventing all the degranulation of mast cells, etc. I think this chronic 'inflammation' may have irreversibly narrowed and hardened my arteries (and/or other vessels) over many years and brought on the PMR symptoms. First I've requested a private cardio-stress test to see if that throws up any clues as to why I'm so weak and deteriorate rapidly, even with mild exercise. The rheumatologists are adamant that PMR symptoms only ever occur after 50, when very obvious, widespread, systemic inflammation is present. They have no idea why the shoulder, neck and hip area muscles are affected most, and therefore what else might mimic the symptoms.
There are other conditions that mimic PMR with the sort of symptoms you describe - and they should be thinking outside the box.
The youngest patient in the literature with PMR was 24 and while that has to have been a diagnosis of exclusion and the response to pred, the youngest pathology proven case of GCA I know if in the UK was 37 - definitely GCA, the pathologist found it at post mortem! I was 51 when my PMR symptoms started, and they definitely crept up at first. No-one told PMR it can't develop at 40+!!!
Indeed. "Usually after 50" changes to "never before 50" in lots of articles. I'd be amazed if hardening and narrowing of arteries, which is considered a normal part of the ageing process, cannot produce the symptoms of PMR, perhaps with a tiny bit of active inflammation on top.
you mention eye pain; has that been evaluated for GCA?.
?
As I understand it, the same blood tests and PET/CT scans are done for both PMR and GCA. Since they are all normal, then I can't possibly have either! I carry 60mg of prednisolone in my wallet just in case. As soon as I develop a headache and/or eye pain, I take dispersible aspirin and lie down. If that doesn't clear it completely, I take paracetamol. I've never had blurred or double vision, but have had visual disturbances and talked gobbledegook a couple of times, so I try to avoid pushing myself too hard. I believe these are migraine symptoms. I could only see one side clearly, regardless of which eye I opened, suggesting a problem at the back of the brain, not the front, as with GCA.
Um - it is a misapprehension that GCA only attacks the temporal region - it is quite keen on developing in the occipital region, at the back. And THAT is where the threat to vision originates as that THAT is where the visual cortex and optic nerve is supplied with blood via the ophthalmic artery. When it is affected, the blood supply to the optic nerve is compromised, either a longer term reduced blood supply or sudden total stopping of blood flow due to a clot getting stuck. Longer term reduced blood flow results in AAION that is identifiable as swelling of the optic disc on the retina but sudden infarction as in a stroke may not have any heralds.
Sorry to hear such a tale of woe -hopefully your pension can be spent getting some sensible answers.
Hello Atopic Guy,
I would consult the doctor and get some blood tests. Your suffering is too much. Good luck.
Hi! Thanks for replying. I have. All blood tests are normal. So was the PET/CT scan. I have the symptoms of PMR but no diagnosis and no treatment. Apparently, I only imagine that the disease responds to steroids.
I'm nearly thirty years younger than you and my legs have been like jelly last few days - suspect it is a combination of PMR and wrong steroid dose. I so desperately want to be gardening too but the excellent advice on this forum will probably stop a lot of self inflicted pain and fatigue. I'm not one to ask for help if I can do it myself but that is going to have to change 😢
Accept help . Not easy, but we all have to sometimes even though it goes against the grain.
Hello,
You could always try raising your steroids. Everybody is different, but increasing my pred from 7mg to 8mg has had a nothing short of miraculous result. I must admit that I hadn’t wanted to do this,but my back pain was so bad and I felt so wobbly that I thought I’d take more pred to see what would happen. My pain disappeared over the course of the day and it has now completely ebbed away. I did want to one day achieve a lower dose and be free of steroids, but these things take time I suppose. I have osteoarthritis in my lower back and had thought that the pain was due to this, usually exercises would keep it at bay, but this wasn’t happening. After some time I realise that my PMR infection must have increased, given the result of the additional steroid. I hope that you have the same good luck.
Thanks bluepuddy and suspect you're right. Only just started treatment but GP lowered me far too quickly. I've increased twice and been back on starting dose (40mg) for just over a week now but little improvement so fear I may need to go even higher now
Unfortunately that may be true -and many find the more often they flare, the more difficult it is get them back under control…
But some doctors don’t get that -and keep repeating their error!
I saw a different GP last time and her mother has PMR so hopefully my care will improve but not sure the private rheumatologist I had to see was much good either as discovering more possible signs of GCA that I have. Keep reminding myself how bad I was just a few weeks ago but honestly feel like Alice in Wonderland
Yes I can understand how you feel.
But as you started on 40mg that should be more than enough to control PMR symptoms -in fact it’s usually the starting dose for GCA. ..as we commented in your post.,
Looking at your own post you give percentage figures -but I’m guessing you dropped 5mg for 3 weeks on the trot -so down to 25mg? Even that should be enough to control PMR symptoms.
So I would be wondering if you do actually have GCA (you do mention jaw issues) rather than PMR… so the Rheumy may actually have been correct. If so then the reduction plan in your words was bonkers.
Please do discuss this possibility with new GP. ..and get on the correct dose
Yep - dropped 5mg every week with only one week on 40. In addition to the jaw issues, lost feeling in my fingers (assumed that was Carpal Tunnel - possibly due to PMR) and had a scabby scalp (healed a lot now on steroids). All of this cannot be a coincidence. Other medication stopped my migraines which might explain lack of headache (although leaned you can have GCA without head pain) and then there's the poor 37 year old from the mortuary. Thank you so much for the advice
Utter madness and irresponsible - never at a dose long enough to know it was still enough. If it WAS GCA, then you needed a few weeks at 40mg at least.
Ditto, ditto & ditto to PMRpro’s comments 😊
Dear BB,
I hadn’t realised that you have only just started treatment. If your relatively high dose is not giving you relief it does indicate that a higher dose is needed. Tell your GP that you are still having problems, at this stage she or he should react quickly and increase your dose. . One of the indications of PMR is the miraculous effect the steroids have on relieving pain, and, in my opinion, this should have happened at the beginning and been maintained in your case. As somebody more informed than me has said on this forum, it’s your symptoms that indicate what you need.
I did have a good response with almost all stiffness gone within twelve hours and about 90% of the pain over the following days but after just one week they starting reducing me down 5mg but only got as far as 30mg
Yep, I agree with both PMR and Dorset Lady.
Well, I will be 81 next month and am an avid gardener. PMR was diagnosed in 2020 then we moved to another state the end of 2021 so had to start gardens all over and built several raised beds. While my pain has been controlled by the Pred. the weakness is always a bother. I have finally managed to taper totally to 5mg and recently went to 4.5mg every 3rd day. I have had the best luck with staggering1/2mg drops gradually working to the new daily dose. As far as gardening, I have managed to keep up the raised beds and plant thornless blackberries, raspberries and strawberries in permanent beds and have a few veggies started too. I work till my body says to stop then take the rest of the day off. LOL I do wish I could walk farther without experiencing the muscle weakness and shortness of breath. Grocery shopping requires a shopping cart the whole time to assist me.
Thanks Dydee, salutations to your courage. Fabulous fruit and veg growing.
You see you have lots of company!💞
Yes, it’s good to see that the people on the forum find ways to carry on their gardening in spite of their health problems. It’s courageous and encouraging. (I sowed my broccoli, chard and rocket yesterday, a bit late, but pleased I did it).
👩🏼🌾🥕
😀👍
Gardening for the feel good factor!
Too little pred or too much gardening?
Doing gardening and noticed leg bleeding
Prednisolone/PMR - Hysteroscopy
