Increase prednisalone

[Shandon1]

I am going to increase prednisalone from 2 to 5mg to see if it helps leg numbness and pain. Is this a good idea?

[PMRpro Ambassador]

No-one here is qualified to advise that sort of thing - although it's something I might try for a day or two to see if it helps but I'd go straight back to 2mg if it doesn't.

You haven't said here what sort of pain and numbness - I'm sure you may have done somewhere else but I can't remember.

[Shandon1 in reply to PMRpro]

It just seems that problems increased as I lowered the pred. Numbness in legs, pain after walking about 300 yards, pain around knees and around calves. Just been to the vascular clinic, no problems from the vascular side. One doctor thinks it might be related to PMR.

[PMRpro Ambassador in reply to Shandon1]

It may be you have very tight muscles - maybe a physio appointment might be helpful.

[MaryWR]

Just out of interest I have been plagued by numbness, tingling and pain in my legs which started fairly soon after getting pmr. It has never responded to the steroids. I have had various examinations but no reason has been found. Now I am down to 5mg after over 18 months and it is gradually starting to diminish, much to my relief. I am now beginning to wonder if it was a less common side effect of prednisolone. It is not listed in the blurb with the drug but I have found 'tingling and numbness' referred to on some websites as a side effect , including the Mayo Clinic which is generally pretty reputable. Of course we have no idea if your pain and mine are the same, but it's food for thought. Good luck!

[NursePeggy in reply to MaryWR]

I too have had tingling and numbness in my legs and feet for nearly the two years I have had PMR and been on Pred. I dont notice it so much when I am moving around, but exercise does make it worse. A neurologist diagnosed short fibre neuropathy probably due to the steroids. Sometimes it gets very strong and feels more like a buzzing and I find it very uncomfortable. I am on 7.5 mg Pred and am hoping that as I reduce down further it will get better. I also noticed that it is listed as a side effect on the Mayo Clinic website and a couple of others.

Do you find that yours gets worse with exercise ? Also some days are worse than others.

[MaryWR in reply to NursePeggy]

Yes, mine gets much worse with exercise and even prolonged standing. It develops into shooting pains down my legs. It does vary a bit but generally has been awful. It's generally, but not always, OK when sitting or lying down.

[NursePeggy in reply to MaryWR]

Mine gradually lessens on sitting down and lying in bed, so it doesnt keep me awake at night. Although I do take a mild sleeping tablet as I get nightmares from the Pred and wake up with palpitations ! Some days the 'tingling' is so bad I dont know what to do with myself. I have been given pregabalin and amytriptilene but the side effects are too bad. Have you tried any different meds to help with it ?

[NursePeggy in reply to MaryWR]

I also have days when I seem to tremble/shake internally and sometmes it is visible too. It all seems to zap my confidence and coupled with my fatigue It means that I am less sociable. I have been trying to reduce from 7.5 mg to 7 mg and am finding it very difficult. Have given up a couple of times. Will try again in a week or so.

Do you have any of the trembling/ shaking too ?

[MaryWR in reply to NursePeggy]

No I don't get that. The only time I've had shaking was when I exercised in the early days - then my leg muscles would shake uncontrollably.

[pammy_hyland]

Yes I have had to do the same recently and feel great again thank God on 5mg. Have you had your bloods tester recently? I did when I had to increase and they were up to 68 again PMR does go into remission for some but not all I've been reducing for 6 years now and haven't been able to reduce down to any lower than 4 mg without it flaring back up again. I now feel I would rather stay on 5mg permanently and have a good standard of life but know i will have to probably have to do battle with my Doctor in 6 months the time lol .Good luck on your journey x

[Shandon1 in reply to pammy_hyland]

My blood appears to be fine. A had a leg vascular check yesterday and that was good. I will probably experiment back to 5mg. But the doctors do try and get you off steroids!

[PMRpro Ambassador in reply to Shandon1]

Some time ago a former GP who had developed PMR herself posted on the forum - admitting she now had a totally different perspective and "Really, is 1mg here or there that important?"

[pammy_hyland]

Oh sometimes inflammation doesnt show up !Yes they do but I'm not going down again as I've tried 3 mg twice now and I'd rather have a shorter comfortable life than be in constant pain and have fatigue! Good luck with your doctor x