pain in legs

[CavalierKC3]

does prednisolone weaken muscles. I like to do gardening, walk dog etc. the pain in my legs is terrible, normally worse mornings. Now on 9 mgs of prednisolone down from 50 started last august.

[DorsetLady PMRGCAuk volunteer]

Pred does weaken muscles - and it is normal for aches from your disease to be worse in the morning until the meds get into you system….

But you may have dropped to too low a dose, how long have your legs been troubling you? You might need to go back to a slightly higher dose or consider adjusting the time you take your Pred….but more info might help us to help you…

[CavalierKC3 in reply to DorsetLady]

I was basically alright till about March/April time. Rheumatologist gave me a 2 year plan for Prednisolone when I started last august. I follow it exactly. They maintain all my leg pains are nothing to do with PMR or GCA. Doctors just prescribe co-codamol. I did have knee/leg pain before I was diagnosed with GCA last august which was worse in mornings. Once I started Prednisolone all this pain went. About April time left leg started to get painful again & is always worse mornings now right leg is very painful. I just wonder if I try to do too much day as I love garden & walking dog, but do get very tired

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

Rheumatologist gave me a 2 year plan for Prednisolone when I started last august. I follow it exactly

Unfortunately no one has told your GCA & PMR they should only last 2 years - and very often they don’t - in fact nearer 4 years is much more common that many doctors [rheumies included] like to acknowledge.

Leg pain are highly likely to be PMR - and they will have been masked at much higher GCA doses … so now you are down to PMR doses they will have resurfaced. If Co-codamol doesn’t relieve them, then that tells you you they are PMR related, not something else.

You may well be trying to do too much, so maybe trying pacing yourself a bit more…but my gut feeling says too low a dose… what dose were you on when they returned?

If you haven’t already, maybe have a read of this - and the links included in pacing etc -

healthunlocked.com/pmrgcauk...

[CavalierKC3 in reply to DorsetLady]

rheumatologist is adamant it’s not PMR & would not consider upping Prednisolone dose. They say if it was PMR I would not be able to raise arms above head because pain should also be in shoulders.

[PMRpro Ambassador in reply to CavalierKC3]

B^££^&(* - if you'll excuse the French!!! Once I was on pred the inability to raise my arms above my shoulders which was there at the start has never returned. But the aching legs and stiffness have. in a flare. It is either/or and and - every patient is a bit different but they are too fixated on ALL the symptoms in the textbooks being present at once, It rarely happens. PMR hasn't read the textbooks.

There is a very good 2 year taper

rcpe.ac.uk/sites/default/fi...

which claims a low rate of relapse - much of that I think is the year at 10mg that they include. But ALL taper plans in the literature say the speed MUST be adjusted for the individual patient but that codicil is mostly ignored. I am convinced that when a patient is allowed to flare after starting pred - whatever the reason - the ongoing management with steroids is complicated. There is no reason why but it happens again and again and is also seen in patients who had had PMR for a long time before diagnosis.

[DorsetLady PMRGCAuk volunteer in reply to CavalierKC3]

Again -I’d say has your PMR read the book? - not everyone has exactly the symptoms some doctors assume. We as humans are all slightly different -and so are our illnesses…,

Bit of thinking outside the box required…

[confused2 in reply to CavalierKC3]

I too had very weak muscles and couldn't do a lot of what I had previously been able to do. With the help of my Physio Therapist and an exercise program that I faithfully followed I am now doing gardening etc. The exercise program is ongoing and I also needed it because of bad knees. It took over 3 months before I could tell I was improving. I was encouraged by that so have continued. All this while still on prednisone but tapering all the time. I was one of the slower user because of flares. I am off 5 months now, Stilll exercise and walk. Have had two knee replacements, one on prednisone and one since getting off. I am 81 years old.

[Beachygirl1 in reply to DorsetLady]

Hi. I have been on pred for some years now. My GP feels I still have PMR. I am currently on 10mg. Over the years I have reduced, gone up but never got off completely. The arms seemed to fair better, so in my mind the doctors need to listen to patients instead of relying on text books.However, my legs now ate very painful, overnight/mornings are the worse. One rheumy wanted to treat me for fibromyalga but I kept saying but it is my musc)es in my legs that is the worse problem.

So after I saw another rheumy he had MRIs done and the result is my tendons are 'shredded'.

He puts it down to long term steroid use and PMR, both hebthinks didn't he damage.

No cure he says so now I try and rest when I need to, I do my stretches (recommended by physio), swim & ride my bike. The swimming & bike riding really help. But now I need a wheelchair to get around shops etc. So hoping for always improvements. This PMR is more cruel I think than anyone imagined.

[DorsetLady PMRGCAuk volunteer in reply to Beachygirl1]

I agree... some are very good listeners, unfortunately a lot don't seem to be...

sorry to hear your PMR has caused you so many problems...

[Beachygirl1 in reply to DorsetLady]

Thank you and wish you well

[Mayadill]

They maintain all my leg pains are nothing to do with PMR or GCA

Aargh time again. This is so ridiculously awful I laughed, speaking as someone whose legs were screaming bags of agony at diagnosis.

[piglette in reply to Mayadill]

If your medical professionals can get something such as PMR so wrong, God help us if we got anything more deadly.

[Sharitone]

If the doctor thinks your leg pain is not PMR, then should he/she not be trying to find out what IS causing it?

I have also had a lot of muscle and tendon pains since reducing pred, and when I ask why it is, I never get a straight answer. But all the PILs and other sources say that pred can weaken muscles. For instance, an NHS site for physio exercises has a list of things you can and can't control with tendonitis. Number One 'Can't' is having taken corticosteroids.

[agingfeminist]

for a small number of us pred can induce muscle myopathy, You can see the muscles disappear, especially around thighs. Then you are able to do very little without the muscles feeling like jelly. And of course the PMR does not like muscle activity and overused muscles will often complain later (DOMS).

Try doing less (sometimes nothing) and see if that helps. This disease may not kill us but it is not easy to live with. The experts on here will be helpful.

I have transformed my garden into an almost no-care garden...it is small so it was easy. But I miss the joy of pottering in it. We need to remember that one day things will be easier (probably)

[Animalover65 in reply to agingfeminist]

I also have a small garden. How did you change yours to be more manageable?

[agingfeminist in reply to Animalover65]

I probably should add that my garden is in Jerusalem. So the first ting was to avoid plants that need a lot of watering (also for environmental reasons). I don't grow things that need pruning or pest control (like roses) I now only grow in a few large pots so everything is raised...and covered the rest of the ground with stones...so no weeding. I do have a few trees for shade (evergreen so less leaves to sweep up). No annuals. so no planting. I have a slow-release fertilizer I sprinkle in the pots once a year. I do have some flowering shrubs in the ground which I cut back once a year (but drought resistant). I do hope this is helpful.

[Animalover65 in reply to agingfeminist]

Yes, that sounds lovely. I also have shrubs and pots. I enjoy feeding the birds and when I get the energy! - I will clean up the little solar fountain and enjoy the sound of running water. Do you get many birds where you are?

[agingfeminist in reply to Animalover65]

the bird life here is amazing. Israel is the land bridge for the massive migration between Africa and Europe. They go along the Jordan valley that lies to the east of Jerusalem but some are tempted by a large green oasis at the highest point in Jerusalem . It has been preserved as a large verdant area (called the Jerusalem Bird Observatory) and sometimes they stop off in my garden (I have seen a migrant willow warbler and a wryneck) routinely I have a syrian woodpecker, jay, blue tits, blackbirds, a robin, laughing doves, bulbuls, house sparrows and palestinian sunbirds(like humming birds). A wonderful one time visitor was a kingfisher. Very noisy ring-necked parakeets (escapees as in London) sit in a nearby fir tree and throw down the cones. What bird visitors do you have?

[Rachmaninov2 in reply to agingfeminist]

As soon as the apples on my apple tree ripen the parakeets appear, they love them. Such beautiful birds and very noisy. 🦜🍏

[agingfeminist in reply to Rachmaninov2]

and very intimidating to the smaller birds....

[Animalover65 in reply to agingfeminist]

There is a small leanto with open trellis and I leave extra food on a ledge inside for the smaller birds so that the bigger birds don't hog all the food.

[Animalover65 in reply to agingfeminist]

Its warm in Hertfordshire today -( probably not as warm as in Israel!), but thank goodness less humid than yesterday! I could just do with sitting under a fir tree! I recently have been visited by pairs of robins feeding their babies, we seem to have an increase in sparrows, also have wood pigeons, blackbirds and the occasional tiny wren. I will need to check with a friend who sees a few birds of prey circling over parks near her and over a park near me - a type of eagle. Its amazing being able to compare notes so far away! Have you always lived in Israel? What is your average temperature at this time of year?

[agingfeminist in reply to Animalover65]

up until now our temps have been very similar to those in southern England but this week midday is around 30C and evenings drop to about 19C. I don't go out except at around 6.30 a.m. to water the pots once a week. I have become very heat (and cold) sensitive. I don't put food out for the birds because we have cat invaders and recently rescued a kitten that had been abandoned. She has already brought me one fledgling blackbird that she caught.

I have a humming bird feeder but don't dare put it out.

I moved to Israel 20 years to teach English to Israelis...Jews and Arabs. It was an amazing job and I still work in the education sector designing courses. Life is very tough here but small achievements really count. ...or at least I hope they do.

[Animalover65 in reply to agingfeminist]

Like you I plan to get a few jobs done in the mornings especially before the exhausting humidity sets in.

I admire people who take a risk and make big changes like moving to another country. I worked in the Civil Service and then as a therapist for Mind for 10years. I have reduced my work and now just work on Saturday mornings and will stop work at the end of December.

I think I have always been a bit of a stick in the mud and having fallen ill with PMR over a year ago and following the pandemic, my life seemed to get smaller and smaller. Recently joined a ballet class with a group of older women which is fun and just an hour a week. This morning the book "Feel the fear and do it anyway" sprang to mind. I remembered being at school and wearing a grey blazer and having a blue timetable. I think I will re -join the gym and sign up to the U3A and slowly pace myself with rest days to incorporate a few more activities. I think in the 3rd age of life some of us need to find a new timetable.

I bet the kitten is fun! I lost my beautiful black cat a few months ago .I have been looking on a rescue site at dogs who need new homes. Problem is I feel like taking a coach there and bringing them all home....

[Animalover65 in reply to Animalover65]

PS I meant join the sports centre- not gym ! And like PMR pro mentioned elsewhere -its either exercise or housework, and sometimes its neither!

[Bridge31]

rheumatologist is adamant it’s not PMR & would not consider upping the dose…..

If I was you I would consider ditching the Rheumatologist and trying to find a GP in your practice that understands PMR.

Several of us have left arrogant Rheumatologists and are managed by GPs.

[PMRnewbie2017]

In the early part of my PMR/?GCA journey, i developed calf pain when walking my dog. My Rheumy was concerned that I may have peripheral vasculitis. He did no tests but I monitored it myself and it improved. At the same time I stopped Omeprazole which can cause muscle pain. The sensation was similar to lactic acid build up and cramping. I learned to walk more slowly and breathe slowly and deeply to maximise oxygen intake and transfer to my muscles. I've never had a recurrence.

[Freya32 in reply to PMRnewbie2017]

Hallo,I too have dreadful pains in my legs, both cramp and aches...I think the aches are to do with the veins.... but I am finding magnesium a really great help.

Eat foods rich in calcium.

Muscles weaken with pmr.

I am also taking berberine with chromium which is helping with reducing appetite and vit D3 with K(the latter I,ve been taking since 2015.) And B vits for nerve cells. And plenty vit c.

Get no help from anyone..saw GP last in Nov.

Good folk on here have helped most.