Prednisolone cured the initial pain in my legs and thighs but deep ache in my thighs & calves persists after 8 months. What can I expect ?

[byebyebicycle]

I am a reasonably healthy 72 year old, a retired Physicist/Engineer and before the PMR used to cycle and swim daily. I live with my wife in a house built in 1880 and we are improving it year by year.

PMR probably started May 2023 with ache / pain in top of left inner thigh and sometimes right thigh. It did not feel like a problem with a joint but also the muscular pain was a deep ache not like other muscle pains I have had.

In May I was swimming 20 - 30 lengths 5 times per week but had to occasionally stop swimming for a couple of weeks. The pain would ease but come back when I begun swimming - eventually I had to stop swimming. But the problem did not go away it steadily got worse and even walking was becoming painful with a dull ache in thigh and calf on both legs.

By October 2023 I was struggling with walking even 20 mins without pausing from the discomfort and by mid November I could not even get on my bicycle, I found it very painful to tie my shoe laces and even to put on a shirt in the morning was a struggle. It had to change.

During November & December 23 I saw a couple of GP's and was sent for x-rays on my hips/pelvic area and they showed my joints were in good condition with little deterioration. The diagnosis was then PMR and this was confirmed by the initial dosage of Prednisolone which stopped the real pain in my shoulders and legs. Starting to take Prednisolone at 15mg/day and within 3 days the real pain in shoulders and legs has gone. I could lift my arm above my shoulders and put on a shirt with no pain and tie why shoe laces with no pain. The stiffness and muscle ache remained but not real pain.

Since then I've reduced the Prednisolone twice from 15 to 12.5mg/day and when reaching 10mg things started to change for the worse. On the 12.5mg/day I could walk quite well (5km’s per day) and I started swimming again. The problem is only in legs, mostly thighs but also calves. No issue at all with my shoulders. When I got to 10mg/day muscle ache increased and the after the first reduction to 10mg I had to revert to using a walking stick which I have been using even in the second period of 15mg/day. I am on 10mg for the next 2 weeks and that finishes with a blood test and then GP visit. I do not see what can be next other than going back to 15mg/day. Note blood tests have shown no increased inflammation for the last 6 months.

[PMRpro Ambassador]

Hi and welcome!

Many people find tapering the dose at 2,5mg at a time requires too big steps down for them. I would be inclined to say that 15mg was barely enough to clear out the accumulated inflammation so that has left you with very little of a buffer to allow wiggle room in tapering the dose. 10mg obviously seems too little - but because of the size of the changes in dose, you don't know if 12mg is what you need - or 10,5mg. That is a significant difference, It took me over 4 years to reliably get below 10mg so relatively speaking you are still quite early on.

Once you are on pred, it isn't unusual for your markers to tell you nothing and symptoms always trump lab results, What sort of levels are you talking about, both pre-diagnosis and now?

[byebyebicycle in reply to PMRpro]

Hi there, thank you very much for your very quick response. It already makes me feel that I'm not alone if that makes sense. Although the 4 years you've taken to get below 10mg is not exactly what I wanted to hear but it gives me a perspective not to expect too much too soon, but I can hope ! I think you might have a very good point about the accumulated inflammation but hopefully that is no longer playing a role. Even though the GP says the inflammation is on a normal background level some symptoms are coming back but worse since I stared on 10mg. After the first week on Pred when I had stomach & tiredness issues they disappeared but now after 6 months on Pred and coinciding with the reduction to 10mg I am having both symptoms again.

For the blood test results -

CRP was around 12 before I started taking Prednisolone, which reduced to 2 after 2 months when I was on 12.5mg. Last 2 readings were >1.

ESR testing started 6 weeks after I was on Pred and was 6. This went down to 2 and has stayed there at for last 3 months.

There is a standard Pred reduction plan, at least in Scotland, 15mg for a month, the 12.5 for a month followed by 10mg for a month and from then on 1mg reduction per month. I'm pretty sure this never works out as I'm already 6 months behind after 8 months 🙃.

Anyway thanks again it's been very useful just writing to someone about it. I guess I'll have a frank talk with my GP scheduled for 2 weeks.

[PMRpro Ambassador in reply to byebyebicycle]

It's a suggested taper all over the literature - but ALL such regimens come with a codicil: "may need to be adjusted for the individual patient", There is no one size fits all for any disorder and PMR is VERY individualistic. Prof Sarah Mackie is horrified when we tell her that doctors persist with tapers - or more accurately reductions - even when it is clear this particular patient can't manage them. Repeating the same approach won't work - like everything else, if it didn't work that way twice, then there is no future pushing it. The blood markers are a guide - not gospel and many patients don't "mount the acute phase response" in the same way once they are on pred.

Down to 10mg often does work out but below 10mg 1mg per month is almost always too fast. We think 1/2mg per month and using a slowed taper is more likely to get you lower. But you are NEVER heading relentlessly to zero, you are looking for the lowest effective dose. For some that may be 10mg - studies have shown that the effective dose for one patient may be twice what it is for another. It is probably less to do with the amount absorbed and more to do with metabolism and, I think above all, the receptors on the cells that the pred has to attach to to be able to work. And disease activity varies over time a lot - and is a significant factor. It is influenced by many things too - stress can have a major effect, other illnesses can obviously mess things up. And I suspect a history of Covid at any point may mean all bets are off.

But we are always here - the NE of Engand charity made a DVD called "You are not alone" and we uphold that.

[byebyebicycle in reply to PMRpro]

PMRpro & DorsetLady, thank you both for the support. I'm just beginning to understand ...... but a lot to digest from this and from the reader, which I have downloaded and will work through. I want to be prepared for my next GP appointment in 2 weeks but apart from authorising the medication, arranging the blood tests and monitoring them I'm struggling to see what else. I realise I need to inform myself better. thanks for the help. (how can i sign off as byebyebicycle ?)

[PMRpro Ambassador in reply to byebyebicycle]

"how can i sign off as byebyebicycle ?"

Sorry - not clear what you mean?

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

You don’t need to sign off [if you mean leave forum? ] - you can stay a member and just dip in and out when you want… we don’t call a register every day, or every week or even every month… 🤣😂. You can change your name if you want.

If you do want to leave forum 😿 this post will still stay on - but your account will be shown as ‘Hidden’

[byebyebicycle in reply to DorsetLady]

Sorry DorsetLady but I only meant you normally sign off a communication with your real name, only I think I read that was not encouraged, and my handle in this case would be byebyebicycle.

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

Some do use their first names, but the advice of HU is not to. That’s them adhering to the various policies they are obliged to follow re identity, safety etc.

Your choice as whether you sign off as BBB or Tom, Dick or Harry or nothing really…😊

[PMRpro Ambassador in reply to byebyebicycle]

I never sign off a comment - it always says who is saying something at the top of the box and we do hope you will be back. I look at a thread as an ongoing conversation and you wouldn't say 'bye unless you were leaving the "room" altogether in a f2f one.

[DorsetLady PMRGCAuk volunteer in reply to byebyebicycle]

Hi and welcome.

That tapering protocol is worldwide -but doesn’t mean it works for everyone . The small print which doctors very often ignore -says it needs to be tailored to individual needs.

As you’re relatively new, maybe have a look through this -

healthunlocked.com/pmrgcauk...

[byebyebicycle in reply to DorsetLady]

Thanks have downloaded and will read thoroughly.

[Merryfield]

my former doc liked to say to go by symptoms, not tests. i can’t give medical advice, only logic. no pain at 15 mgs, pain at 10 mgs. try 15 mgs again and reduce more slowly. although friends on this website get their dander up when i note this, if you start to lose weight unaccountably, get a PET scan or other cancer diagnostic. The head of rheumatology at my hospital says there is an association between pmr and cancer. i have lymphoma.

[marionofnorwich]

Hi I am also a person who has had more problem with my legs than elsewhere. I started in 2020, starting on pred in July or August of that year and tapered quite nicely moreorless at a rate of 1 mg per time. I would feel a bit rubbish for two weeks, level out and then drop again after 3-4 weeks so I would have about 2 weeks feeling rough and 2-3 weeks a bit better then start again. I had just got to 4mg when Covid struck. I had to go back up to 8mg and have gradually got to 4mg with most of my issue being legs especially knees and ankles which affects the muscles about and below. I don't really have an answer for you expect just be prepared to take it slow and try and keep muscle tone up but not at the rate you are used to. I often illustrate to people by saying - you know how your muscles stiffen up when you have done a whole day's walking, well mine do that after 20 mins. So maybe try adjusting what you are expecting your body to do and don't try and go back to 'normal'. But you do have a great headstart by having an exercise habit, just dial it back a bit (more)

[cycli]

Hello byebyebicycle. Love and hate the name. I lived to cycle, read my bio. 3.5yrs in with both but I still hope to get back cycling. Never give up hope

[byebyebicycle in reply to cycli]

I was never so keen. Cycled since I was 11 and really had to give up 2 years ago at 70. My balance was getting worse and PMR was the last straw - I now walk with a stick which if you translate to a bicycle is no fun. When you ride bikes you fall off sometimes, I've done my share, but the last time really hurt - had to cycle home 5km's with bloody legs and arms took me months to get over it. Now add PMR - just had to stop although I have kept one bicycle just in case...

[cycli in reply to byebyebicycle]

I do understand. I was 66 when my front wheel came out caused by a faulty brazing. I was doing 35mph downhill and so the forks jammed and I hit the tarmac head first. Unconscious, concussion, 2 broken ribs, broken collar bone, broken scapula, crushed muscles down my left side. Not nice but back on the bike 4 weeks later. I took it easy that year and the next I was training for the Dolomites and cycled 550miles in 6 days with 55000ft of elevation gain aged 68. two years later I was diagnosed and treated for the two conditions. The worst thing about PMR and GCA was the crushing debilitation of pain, immobility and the frightening headache pain and bulging temples and eye pressure. The prednisolone was a blessing, but after 3 years it wasted 60% of my muscle, redistributed it as fat and compromised my balance. Despite that I have now regained balance, can cycle again and will gradually regain my muscle and fitness. Nothing is really over unless you want it so. I know pain but I also crave the joy and freedom cycling gave me.

[byebyebicycle]

I haven't felt that freedom since I came back to the UK from The Netherlands. Arriving back in central Cardiff - the just getting on the bike outside the door and be quickly on good tracks was completely was lost. And when you've been used to that for 25 years and needing to get in the car with bike to get anywhere reasonable was a real pain. I went over to walking and swimming. But I did have several weeks a year back in The Netherlands where I cycled every day so - OK not many climbs but really pleasant woods and heath land - that was something to look forward to. I've not completely given up hope of getting back in the saddle since I've still got my city bike a Giant which is good enough for what I want. good health, good luck.