Legs

[123456Evita]

Hi. I’m now on 13mg of preds tapering for GCA. Just wondering if anyone else has had extreme pain in thighs and calves. Such an effort to walk extreme fatigue where it’s hard work just making a cuppa. How long does this last. Perhaps someone could give me some answers. Thankyou in anticipation

[DorsetLady PMRGCAuk volunteer]

Hi,

My first reaction would be you've gone below the level of Pred you actually need.

How long have you been at 13mg, if its only a couple of days it may be steroid withdrawal symptoms - and in that case it may disappear within another couple of days. However, if longer than a week, I would go for too low! Of course if you just have GCA, then it could be PMR adding itself to the mix!

If you've gone past the steroid withdrawal stage - then try taking an extra 5mg for a few days, and see if that help, if it does you may be able to drop back down relatively comfortably.

But do monitor it, and if things don't resolve themselves within a week you need to speak to Rheumy or GP and probably get inflammation markers tested. Don't let it get any worse.

[123456Evita in reply to DorsetLady]

Thankyou. I’ve been at 13mg for 10 days now. But had this for several weeks. I have dropped 1mg since I reached 18 mg 1mg per

Week rheumy said until I reach 10mg.

[123456Evita in reply to 123456Evita]

My dr. Isn’t any help at all. But see consultant 24th may

[DorsetLady PMRGCAuk volunteer in reply to 123456Evita]

1mg a week is much too quick, it doesn't give you chance to find the right level - and so you go below it without realising it.

You need to be at each level for at least 2 weeks, (sometimes it can take that long to realise it's not enough) - but 4 weeks is better.

Strikes me, Rheumy not much good either!

[alvertta in reply to 123456Evita]

Too fast

[PMRpro Ambassador]

Is this pain that starts after activity, fades when you stop and then returns when you move again?

He wouldn't be my rheumy, I'll tell you that for nothing!

[123456Evita in reply to PMRpro]

It’s constant. Never goes

[PMRpro Ambassador in reply to 123456Evita]

Difficult to say - but one aspect is you have probably overshot your current "right" dose. No point taking pred at all unless you are on the right dose.

[Silverfoxylady in reply to PMRpro]

Hi there, it's taken reading through a lot of threads to realise that , it's okay to adjust the dosage of Pred.

If one is struggling with pain , then it's fine to go back up 5mg for example. My mother is so set on the work of the GP or Rheumatologist.

Its hard to convince her otherwise.

So she suffers , again as some people mention the support from GPs can be poor. probably as they don't know what they are dealing with.

Thank you for all your work !

[PMRpro Ambassador in reply to Silverfoxylady]

It isn't their pain - and pain is what the patient says it is, not what the doctor or nurse THINKS it is. That is why patient controlled analgesia works so well - and for us, pred is our pain relief.

[Hellyowl]

Hi. I have GCA and have had muscle pain at every level. At 60mg I could barely walk it came on suddenly and never went. I am on 4 mg now and stiffness and pain in arms and legs is constant. I have reduced using the dead slow method over three years. I do Pilates and short sessions at the gym and two dog walks a day. If I didn't I would just get weak and be unable to get around. I have no answer. I just take paracetamol as other pain killers slow me down. I suspect it is my own response to Pred. However I am seeing endocrinologists this weak so might have a fresh opinion.

[PinkertonCat]

I am also tapering dead slow. It has taken me 10 months to get from 10 to 4.5. Recently now getting bad pain in calves and often thighs. It is a crazy disease.

[Fifelassieo]

I also have pain in my thighs, it also makes it difficult for me to walk, feels like walking through mud. I have just dropped in the last week from 60mg to 40mg. It’s awful know how you feel

[123456Evita in reply to Fifelassieo]

I do wish they would tell us how the preds will effect us Wouldn’t keep getting these nasty side effects and stop us worrying.

[Sho-Sho]

I have similar aches and pains in the leg & thigh muscles plus huge fatigue. Started nearly 3 years ago on 60mg for GCA now on 7.5 where I have been for 8 months as don't feel well enough to reduce any further. I'm pretty sure the pain is from weak muscles which is caused by the steroids and problem is I don't feel well or energetic enough to do exercises, try and walk and have taken up Nordic Walking (just 20 min at a go) to try and strengthen up my muscles. I have been lucky with an amazing rheumi who has always advocated a very slow taper and even slower when I got to 10mg, never more than 1mg a month (she always holds her patients for at least 3 months at 10mg). How long it lasts - I wish I knew!