Steroids

[lucy40]

Hi. Can anyone help me with this problem. I have had RA for 25 years I'm on methotrexate 15mg a week but 16 months ago was put on steroids by GP who thought I had polymyalgia after I had a bad flare in that I couldn't raise my arms plus pain in muscles. So I've gradually got down to 3 mg a day. The last rheumatologist I saw said she would prefer me to come off them but low dose e.g. 5mg are not dangerous. Since dropping down to 3 mg I feel like a tortoise legs like lead. Has anyone been on low dose prednisolone for a very long time.? I'm so tempted to go back to 5mg.

[Mollieharry]

Hi lucy40,if you go into the pmr health unlocked you will be able to find out a lot more information on steroids tapering and polymyalgia.

[Hidden]

I take 5mg daily for Vasculitis. Rheumy wants me to stay on it indefinitely. As I already have Osteoporosis with 4 vertebral fractures, things can't get any worse!

[sunnyweek]

Yes I was on 5 mg for about 10+ years. had been at much higher doses as well at times eg 30 and 60. My consultant said I may need to stay on 5 mg indefinitely after so long on them, but after many years I said I'd like to wean off them and did so, finishing just last year. I think he classed 5 mg as a maintenance dose.

[lucy40 in reply to sunnyweek]

Hi thank you for that. Do you feel ok now you're off the steroids?

[sunnyweek in reply to lucy40]

Yes I do feel alright off of them. If I should need a short course to help a flare I will. It was a very slow taper and monitoring how I felt. Adrenals need to kick back in and the consultant said if I felt out of sorts to remain on a low dose which could be lower than 5.

[lucy40 in reply to sunnyweek]

Thank you

[Esmereld in reply to sunnyweek]

Congratulations on that. It is a struggle so well done you. You must be very pleased.

[sunnyweek in reply to Esmereld]

Thank you Esmereld. Its not often we get positive feedback how well we have done. Yes its nice to be off the steroids, still take plenty of others though!. I hope you are doing well.

[AgedCrone]

You have to be careful of Adrenal insufficiency coming off steroids after taking for a long time. Discuss with your doctors what tests you can have if you do decide you want to stop completely.

[lucy40 in reply to AgedCrone]

Hi. Yes I've read a lot. My bloods are ok I'm tapering 1 mg a month down to 3 now but the reason I posted was to find out if staying at say 5mg maintenance dose is harmful after rheumatologist said it was ok if I couldn't manage without.

[AgedCrone in reply to lucy40]

It obviously depends on the test results.Ask your GP to monitor how you go.....he will tell you what to look out for if you feel you do want to push to stop steroids completely

Being in the situation you find yourself in, may just get some people to consider more carefully remaining on steroids rather than taking Dmards.

Let’s hope you can safely get off them without too much trouble.

[lucy40]

Thank you.

[Evaibrahim60]

Please do regular bone density test and if you already doing that disregard this reply.

[LKD67]

I there. I ‘ve have RA and have been on 5mg a day cortisone for at least 10 years. I’ve tried reducing it several times but was unsuccessful. I also take methotrexate 25mg a week and was diagnosed with fibromyalgia due to tenderness and pain in muscles. The ‘heavyness’ you describe sounds very familiar.

[lucy40]

Thank you everyone for your input.