tapering down steroids, on 4.5, in a lot of pain how do I know if this is steroid withdrawal or PMR flare up?

[geater16393]

[polkadotcom]

You don't say how long you have been taking steroids, but the 5mg mark is often a sticking point for reductions. The dose is so close to the amount of cortisol that your body would be making naturally, so you are asking the adrenal glands to wake up and help out on a daily basis - they are lazy things and really want to stay asleep!

Generally the advice is to go back to 5mg and stay there for several weeks - patients are sometimes instructed by their Rheumies to stay on 5mg for 6 months or a year. There are no side effects from the steroids at that dose, so it doesn't present any problems in that way. Once you begin reducing again, slowly, slowly is the mantra. Many do the reduction in such small amounts, e.g 0.25mg over extended periods of time - several weeks. This way is painfully slow but it does seem to work in that there are far fewer flares and/or withdrawal symptoms for most.

If I were in pain on 4.5mg, I wouldn't hesitate to return to 5mg or even 6mg (some go even further up) to see off the pain and I wouldn't be reducing again until I felt really comfortable.

Whatever you decide I hope that the pain decreases rapidly!

[geater16393 in reply to polkadotcom]

I have been on steroids for about 2 1/2 years

[polkadotcom in reply to geater16393]

In that case, you have done really well to get down to 4.5mg, but I do think you will need to remain closer to 5mg or above. There are little or no side effects from the steroids at this dose and you are losing all the benefits of steroids for no gain. It's acceptable to have some background pain along the journey but not severe pain and the steroids are there to give you a reasonable quality of life.

[geater16393 in reply to polkadotcom]

I will take your advice I think, Thankyou

[jinasc]

geater16393

Drop me a pm with your email and I can send you a reduction plan you might like to try.

[geater16393 in reply to jinasc]

Thankyou my email is [e-mail]

[Celtic PMRGCAuk volunteer]

Hello Kim

If you are someone who had raised blood test markers at the outset of treatment, then it may be wise to have those blood tests repeated which could give you the answer to your question. If you have never had raised markers, then the easiest way to find out whether you are suffering from steroid withdrawal pain or increasing inflammation, is if your pain started immediately following a reduction and continued for a few days gradually easing up after a week or two, then it is most likely steroid-withdrawal pain. However, if the pain started some days after the reduction and continued to build then it points to being a flare in inflammation. As polkadot has said, you're at a very tricky stage where your adrenal glands are trying to get going again after being suppressed by the higher dose steroids, and can be a stumbling block for many. If it is a flare then you do need to increase back up on the dose as soon as possible, to the point where you last felt comfortable and remaining there for a couple of months at least. To delay doing so could mean having to go back to an even higher dose. Good luck.

[geater16393]

Thankyou so much, I think that is what I am going to do