Legs hurt

[carolBF]

Hi all bit of a long one sorry

Can anyone tell where to find the side effects from reducing steroids under 5mg please.

I am down to 5mg again and now my muscles in my arms are weak, plus in the day/mostly at night my leg muscles are horrendous with what I can only describe as severe growing pain ache. It’s much worse at around 2am till around 3.30am. My legs also get restless in the evening and I have to go for a walk. Standing up is much less painful then sitting or lying on my side at night. Even my feet ache

My doctor say she wants me off steroids ASAP as it said in my notes that I couldn’t take statins as I suffered muscle weakness.

Are these two drug similar? 😩

[PMRpro Ambassador]

Steroids and statins you mean? No, not as far as I know. Why - does she want to start you on statins? Or is she blaming the pred for your symptoms? To be honest - I think what you describe bears more relationship to having reduced the pred a bit too far and a flare hatching.

What dose are you on and how long have you been on pred? She can't get you off pred suddenly - you have to taper to allow adrenal function to return and if she is that keen she should be looking at the alternative of using hydrocortisone to encourage that - whether it will manage your PMR symptoms is another matter.

[SnazzyD]

Hi,

Two things spring to mind. Firstly the doc needs to be asked how they are going to prevent adrenal crisis during the rapid weaning process. Your adrenal glands are likely going to switch on in fits and starts which leaves you wide open to adrenal insufficiency. You just can’t reduce at the same rate as before.

Having read though your various posts it seems that you just haven’t let up on your body and expect it to get through exercise regimes that may be just too punishing in the current circumstances. Have you been trying to push your body through life in other ways too? I got GCA at 54 and was very fit before diagnosis, up to two days before in fact. Pred can have a profound effect on muscles, ligaments and tendons. I am now 3.5 years in and nearly on zero and I have problems with tendons and feet (now having very careful rehab and orthotics) and only now am I able to do some things without causing soft tissue upset. I stuck to walking 1-3km throughout but I wonder if even that was too much at one point and I’m now dealing with the aftermath. Yes, some people do seem to be able to exercise hard but not many and I sometimes I do wonder if their chickens will come home to roost. The main thing is, that if your body is crying, stop. Pred isn’t there to stop the pain so you can carry on pushing its current limits.

At this dose level, the effects of adrenal glands not making up the shortfall can be felt. I had a permanent fluey achey feeling and it was under 8mg that my tendons and ligaments really went to pot. I reluctantly had to reign my activity in even more to allow my body to recover.

Not sure what connection there is between statins and steroids. I’d ask what the exact mechanism is that links the two. I rather suspect that getting off steroids ASAP will not solve your problems, not least because you are so early in your journey with this.

[Koalajane]

Statins are for lowering cholesterol and some do cause muscle pain.

[carolBF in reply to Koalajane]

Yes that is why I took Statins years ago for high cholesterol but my muscles did the same then that they are doing now. Thank you for all your reply’s a big help

[Bcol]

Morning all. I have been on statins for a number of years now, low dose, only 5mg/day, with no seeming adverse effects re muscles or Pred. However, it took a while for me to find the statin that didn't give me adverse reactions. The first three the doc tried me on caused more aches and pains than my OA and it was only the Rosavustatin that caused me no problems. So if the first ones cause problems, try another a different one and hopefully you can find one that will work painlessly. Peter

[Hidden in reply to Bcol]

You may also find that some patients just don’t get on well with statins at all. Like you, I found it difficult to tolerate even very low doses of statins, in that regard, after trying a course of the precursor to statins, a fibrate , I am now taking ezetimibe en.wikipedia.org/wiki/Ezeti.... Different class of drug to address the same issue.

As patients with ever lower lipid levels, who a few years ago would not have been considered at high enough risk to be treated with statins, are now being treated (like me), a far greater number are being identified as being intolerant to the whole range.

[PMRpro Ambassador in reply to Hidden]

Does it work on its own for you?

[Hidden in reply to PMRpro]

Yes. I am on a very minimal dose, but like many other people, I have tried 3 statins, all v low dose e.g 10mg atorvastatin/simvastatin as opposed to NHS guidance of 40mg. My lipids are low, but on both types, I am marginal as to whether I need them, but took the option offers on the basis of familial history of stroke.

Tried fibrates and strangely had all of the symptoms of a heart attack!

[PMRpro Ambassador in reply to Hidden]

Not sure how much it was but half the normal dose of atorvastatin here almost had me in a wheelchair in just over a week. Not something I have any desire to try again given how long it took to recover!

[Hidden in reply to PMRpro]

Much worse than I then, but I couldn’t tolerate 10mg of any statin and an earlier course of fibrates was horrendous. We are all very different and I can only say, whilst I have had issues, I have had a really active and rewarding life, which many could only dream of, be it adventure or excitement. Some have not been so fortunate.

Take care