Stargiver

[Stargiver]

After not posting for a long time I have done it twice over the last month complaining about pain commencing at about 3 am , a deep ache down my left leg from buttock to foot. I don't think it is an injury or sciatica. I feel now it is just the PMR and my efforts to reduce Pred over the last year has always stalled once I get to about 7mg. Going lower seems to bring on pain in one way or another similar to the onset nearly 2 years ago.

I have been reading posts from people who have suffered for years - not the 2 years and it will go idea my GP gave me. My overarching worry is the taking of Pred long term. I am sure there are loads of people out there who have been. About 10 months ago my GP said - 'Oh you are still on 10mg. You must reduce this as you don't want to be on that dose in a year's time.'

Well I am fast approaching that and although back in June I had managed to reduce to 51/2mg, this was very short lived. ( my husband was in a car accident-- he was on a bike; we went on a reasonably challenging holiday with grandchildren abroad ( well challenging if you have PMR - lovely otherwise, ) and we put our house up for sale!

So today I have taken 10mg Pred and hope to reduce again very slowly as advised by DL and all you lovely people. It is the yo-yo ing which is the worry and the dependence on Pred with the accepted side effects. Thankfully I have not put on much weight and am still in a healthy BMI band, but don't start me on the bruising of arms when a feather floats by, overheating and constipation!

I value this forum a lot so apart from trying to allay my fears or hearing your stories, I know we all have to play the long game. As my mother who has had PMR in the past and still on about 4 mg at 97 says 'there are worse things'.

[piglette]

The pain down your leg does not sound like PMR, although I could be wrong. Have you tried taking painkillers for it? If so did they work? Take things slowly and you will find that you do reduce.

[PMRpro Ambassador]

There certainly are worse things - I've been on pred for 14+ years. Hasn't killed me yet but it has certainly given me quality of life with regard to the PMR stuff. And even on Actemra - I still need and am likely to continue to need about 5 or 6mg.

[Sportsgirl]

I also am experiencing leg pain and weakness in my left leg. I also have Achilles tendonitis. I am on 4.5 mg of prednisone. I have had PMR since 2018 and can’t seem to reduce below 4 mg. My leg pain is between the joints and is worse when I am sitting. I tire quickly when walking. Tire means my legs ache and feel weak. Is it myopathy?

I go to my rheumatologist on Wednesday and I will find out what he has to say. Would love to go with some insight from others. I also value your insight and knowledge.

[PMRpro Ambassador in reply to Sportsgirl]

Have you had x-rays? That doesn't sound muscular. I had achilles tendinitis - was told to get orthotics - easy enough here, orthopaedic shoemakers all over the place! Although it took some time, it has worked. Sensible shoes with a raised heel are ideal, plain trainers tend to be a bit flat.

[Sportsgirl in reply to PMRpro]

Thanks. I have orthotics but only have them in my sport shoes and I don’t wear them too often. I will change that. No X-rays….yet.

[PMRpro Ambassador in reply to Sportsgirl]

Only really any use if you have them in place all the time! Or you are confusing your body going from correct support to incorrect ...

[HeronNS]

It's possible that some nerve or other is being compressed or otherwise irritated while you are lying down. In the past I've had various pains develop overnight, and now an arrangement of pillows has cured that. (As I've said elsewhere this lends new meaning to the expression "making the bed.")