Polymyalgia Rheumatica [PMR] and Wobbly Legs

[davidemm]

I am a long-term Polymyalgia Rheumatica [PMR] sufferer and been on steroids for quite a few years now. All of a sudden my lower legs started to give away and I felt very weak and wobbly. Then I read on this forum about the people who have experienced the same and upping the steroids immediately helped so I took an extra dose and can’t believe the results. Within an hour I feel like a new person. Why did I not think of this before. 🤗

[PMRpro Ambassador]

Probably because you have been brain-washed into believing that any such effect is steroid myopathy!!!! Let's hope it lasts and then lets you reduce again.

[Louisepenygraig in reply to PMRpro]

This is interesting. I have been feeling a lot weaker and wobbly since I reduced from 10 to 9.5. I have been worrying about steroid myopathy but reading this makes me think it probably isn't. So far I've been sticking to 9.5 and postponed reducing to 9 because I have 'niggles' that make me feel 9.5 may not quite be enough. I have a blood test Tuesday so I think I'll stay on 9.5 then go back to 10. We're going away for a few days on the Wednesday and will have a 3 hour car journey - longer by the time we've had breaks. Would it be a good idea may be to actually go up to 12 for the journey and then reduce down to 10 over the next couple of days? I'll be relaxing in an empty house while my husband's out walking so it won't be stressful while we're there.

[PMRpro Ambassador in reply to Louisepenygraig]

I haven't actually raised my dose for travelling ever - though if rounding up the dose for long haul flights means a bit extra I don't complain. I think some people do - but I don't know by how much.

[Louisepenygraig in reply to PMRpro]

I found travelling back from the same place a couple of weeks ago absolutely exhausting evan though I'd been ok going down so I may give it a go. I've not increased my dose while travelling before either so I'll see what happens this time

[davidem in reply to PMRpro]

Hi, actually I’m the guy who does the brainwashing!

[PMRpro Ambassador in reply to davidem]

Didn't say WHO washes brains ...

[davidem in reply to PMRpro]

Really no problem. I’m an old hand at this horrible thing and been well blessed in my reactions and handling. Lovely, helpful and practical ‘rhumy ‘ and my Doctor is so good. Anyway I’ve learned that the pills are my friend and together we live!

[PMRpro Ambassador in reply to davidem]

Makes such a difference. How long have you had PMR? Mine's been making its presence felt for over 15 years and been on pred for heading for 10 years. Getting bored now ...

[davidem in reply to PMRpro]

About the same.

I remember how bad I was, kept falling over for no reason. Hip pains, it’s amazing what 25mgs of the stuff does. Was high as a kite and stared living again. But there were and are strict limits/plateaus each needing learning and remembering. My bottom is 5.5 any lower and in a couple of days I wake up with Riga mortise. Take a boost and two hours later, I’m fine. I live at 7 a day. Always taken last thing at night to be ready for the 4.30am battle.

[PMRpro Ambassador in reply to davidem]

15mg brought a less than 6 hour miracle. It's been a bit mixed up for the last year or so - looking forward to seeing if I can get back down to the 7mg I was very happy at this time last year. Time will tell.

[davidem]

Thanks. Dosage is very sensitive. It only takes a little one way or the other.

[PMRpro Ambassador]

Doesn't for me - wish it did!!

[davidem in reply to PMRpro]

Have to say in some eight years it’s worked.

The problem is finding the lowest dose to achieve the highest result. Go too low and disaster strikes. I guess if you’re a lifer you know your body!

[davidem]

Please explain 😊

[Hidden]

Very timely. I too get wobbly legs along with aching calves. I’m down to 30mg from 60

D

[davidem in reply to Hidden]

Wow! That’s one heck of a dose. I started at 25. Looking back and realising it was possible for life, did not really matter. Must say wobbly legs I don’t like. Taking the extra appears to be working so I’ll keep on for a week or ten days then look to go back to the lower dose.

[Hidden]

I started with GCA hence the high dose. Then my GP diagnosed PMR which I suspected for a while. I will never get used to this but am determined to have some fun. D

[Bailybiscuit]

I have weak legs caused by steroids I am told. I have been on them for 5.5 years so am being weaned off. I'm also on methotrexate and humira. According to my gp my legs will never get back to normal. A physiotherapist said the ligaments are stretched due to pred, they certainly are wobbley and I wear knee supports. I know steroids would make it a lot better but I have had so many other conditions develop because of them that I dare not raise them again. It would only be a temporary relief.

[PMRpro Ambassador in reply to Bailybiscuit]

I wouldn't agree with your GP - if you go about it right you probably could improve. I had quite severe steroid myopathy after about 4 months on methyl prednisolone. I was switched to a different form of steroid and started walking the way I have described a few times in the last few days. At first I was on crutches. It took some months - but I got from 5 mins and struggling to being able to walk for up to 45 mins at a time, and again after a leisurely lunch rest! Since that time I was able to walk for a couple of hours at my own pace and with some rests. I can't at present but for another reason - it is time to start again once this sore knee calms down!

[Bailybiscuit]

I am only on 5.5mg now but have been over a year reducing down. An old X ray shows a bit of wear but I want an MRI as the X ray was done in 2017. I also get horrible pins and needles and numbness down the outside of my legs from the knee to my toes. Wearing the knee support alters that and makes it more bearable. I can't take Amitriptyline or Gabepentin for it as it would raise my eye pressures as I have glaucoma.

[davidem in reply to Bailybiscuit]

That’s a same. I have/had sciatica and the Gaberpentin stopped it in its tracks. Both the pain from crumbling vertebrae as well as sciatica were stopped and not had anymore trouble but recently got the pins and needles. I put it down to lack of blood circulation (body getting older).

[Bailybiscuit]

There's so much that can't be taken when you have glaucoma. I was prescribe amitriptyline and it was good, then my GP realised I shouldn't have it. I was also prescribed an inhaler for mild asthma and when I read the leaflet it said not to take if on beta blockers, not even the eye ones. I had no idea my glaucoma drops were beta blockers. Also I asked the pharmacist if I could take allergy eye drops. He said I couldn't and should take a tablet. I said I would just try Piriton to which he said" You must not take that if you have glaucoma, take the Tesco one" I had been taking Piriton for itching a while ago.

[PMRpro Ambassador in reply to Bailybiscuit]

Just underlines we must check everything with at least the pharmacist - and even then that isn't enough!!

[davidem in reply to Bailybiscuit]

Strange world. Politically Correct Medicine.

I’ve got all my 10 daily drugs listed in the pharmaceutical app for checking compatibility . . . . I should not be taking half my pills with the other half . . . . . sometimes it’s all too belt and bracers.

When you read the side effects of some of the drugs you wouldn’t have them in the house k et alone take them. I was terrified when I read what Prednisolone could do. It didn’t! But it did hold in check my Polymyalgia Rheumatica [PMR] .

But that’s me . . . . .!

[Bailybiscuit]

It certainly does. I check everything that I am prescribed but I just didn't really think with an allergy tablet as my own gp had told me to take Piriton for the itching and that is wrong according to my go. Although she told me pharmacists are over careful at times.

[Purpleprimate]

Anybody get 'foot drop' with PMR? It suddenly appeared but slowly subsided although it is still with me a little, which means I have to be careful as I'm prone to trip with that foot.

My leg muscles have atrophied which my consultant says is due to the Pred, but also because I'm taking considerably less hard physical exercise. I'm going to get back on the rowing machine regardless of the pain & see where I get to.

Does Pred have any side effects at all, & if so what are they?

[PMRpro Ambassador in reply to Purpleprimate]

This thread is over 3 years old and only a very few of us will see your question. You would be better to report it as a new thread in its own right,

As for your question about side effects - have you not read the PIL (patient information leaflet) that comes with your tablets? They always list the most common effects,

nhs.uk/medicines/prednisolo...

However - there are over 82 listed side effects of pred - no-one gets them all and many get very few of them. Many are only a problem at high doses and usually improve as you reduce the dose. Most of the common side effects can be mitigated and even avoided altogether when you know how

[Purpleprimate in reply to PMRpro]

Yes, thank you, I only saw the date after sending. Nearly, well in fact all drugs, when you read the possible side effects the suppliers cover themselves by mentioning nearly everything. The reason I asked is because you often cite PMR being the problem rather than Pred, so if you are uncomfortable just up the Pred. The Consultant I am seeing was concerned I had been on 10mg for nearly 2 years so should push to get the dose down. When I was first diagnosed I was put on 25mg & felt totally back to normal. At the moment on 9mg I feel worse than when first diagnosed but am more used to the 'pain' so am still trying to reduce. I am slightly confused but I expect many people are & there is no doubt the Pred makes me feel down at times - but then maybe its the PMR. I've only spoken to one other person I know who has had this condition & for him it disappeared in around 2 yrs & he is now fine. Hopefully there will be a London group meeting sometime this year so I am able to get some personal feed back. I'm afraid when I read this forum I get more confused because their are so many different views/ideas as to how best to cope with PMR/PRED. Am also taking nortrptyline 10mg which is suppose to help with pain but I haven't seen that mentioned? Thanks again.

[PMRpro Ambassador in reply to Purpleprimate]

Men often have a shorter and less complicated journey with PMR but probably a third of patients are off pred in about 2 years - but no-one knows how many of them relapse soon after. It took me more than 4 years to get reliably below 10mg. After that I did get down to under 5mg before haveing a big relapse of inflammation and had to go back to 15mg.

There is absolutely no point being on too low a dose - all that happens is that the inflammation builds up again until you are back where you started, just like a dripping tap will fill a bucket and overflow sooner or later. Once you allow the symptoms to "escape" and cause a flare it is often harder to get things under control again so you store up problems for yourself later.

Unfortunately many doctors believe the "PMR lasts 2 years" so if a patient is on what they regard as a high dose for longer than that they get very edgy. It seems to be an English-speaking problem - most doctors in Europe accept that PMR is a chronic disorder and my rheumy says he has quite a few patients on long term pred but they are mostly on well below 10mg. I have been an exception being stuck at well above 10mg. I haven't fallen apart yet, have no sign of diabetes, my weight is much as it has been for years and only recently have they found any sign of cataracts - but since I am 70 that isn't unusual.

Your doctor may want to push to get the dose down - but the limiting factor is the activity of the underlying autoimmune cause of the symptoms we call PMR and the amount of inflammation it creates. If he won't use enough pred to manage that, you will end up back where you were and needing even more pred. PMR is the master - not the doctor's views.