New symptoms following tapering

[Gurufjm]

Hi everyone. Having been diagnosed with GCA Sept 2019 I have been tapering from 80 mg and today I am on 1 mg and due to finish on 31 Aug. However... since being on 4 mg I have had joint pain in my hips and hands, some days worse than others. I have pain in one foot and just feel old !! Never had this before. I am 63, standard weight and reasonable fit but things just seem so hard at the moment. Has anyone suffered same? The great news is no sign of any headaches!!

[PMRpro Ambassador]

The symptoms of PMR can affect hips and hands and feet (whatever is claimed by some doctors) - and PMR is found in about half of GCA patients. It won't appear until you get to a low dose of pred - PMR doesn't need as high a dose to manage it as does GCA.

Has the severity of the symptoms got worse as you reduced from 4mg?

[Gurufjm in reply to PMRpro]

Yes just going for a walk with dog is becoming a problem and taking anti inflammatory every day. Tempted to self medicate back to 4 mg

[Hidden in reply to Gurufjm]

I am a new member of this group but have some knowledge of medication. Might I suggest that you don’t self medicate and instead discuss this issue with the health professional managing your care? Apart from the inherent risk, where will you obtain your long term supply from?

[PMRpro Ambassador in reply to Gurufjm]

Discuss it with your doctor - firmly. You have overshot the point you were looking for, the dose of pred that manages your symptoms well. To be off pred in a year, even with GCA, is very fast and no reasonable doctor should deny you longer on such a low dose of pred. Particularly since that low a dose of pred is safer than long term use of antiinflammatory drugs, especially for older patients.

[Gurufjm in reply to PMRpro]

Thank you ... that has given me confidence to go back to my GP. I have no GCA symptoms at all and have never been diagnosed with that so not sure I will get a sympathetic response!

[dancersize2]

That was a very very fast reduction. I think going back to 5mg sounds wise and hope your GP or specialist will agree to that. From then slow the taper down.

[Rugger]

To get down from 80mg to 1mg in less than a year is very fast. At low doses of around 5 mg, I tapered by 0.5mg per month. If it takes another year to get off pred, at these low doses it's no real issue.

Best wishes.

[Mikb]

I had the same thing happen to me. I got to 1 down from 80, though not as fast as you, and it was determined I had PMR so I went back up to 15 at rheumys suggestion and was off totally a year later. I have been off the pred for 5 months now and so far so good!

[Gurufjm in reply to Mikb]

Were you on Pres originally For GCA or PMR? I have never had a PMR diagnosis and only ever seen my GP?

[Mikb]

GCA originally then diagnosed PMR when at 1 mg. I hurt at that point. Couldn't lift arms to put something on a shelf. Hurt to walk. I probably had the PMR running in the background of my GCA diagnosis but high doses of prednisone covered it. Treated throughout by a rheumatologist

[Gurufjm in reply to Mikb]

Thanks are you in UK? Trying to find a rheumatologist I can see privately for speed

[Lonsdalelass in reply to Mikb]

And now you're off the pred, are you completely symptom free? Or do you still get some stiffness or aches?

[Mikb in reply to Lonsdalelass]

I am good. Took a while to feel better but think that was adrenals waking up. I’ve gradually been getting more energy. I have a ruptured achilles tendon so don’t walk as much as I would like, but still manage some walking. I don’t believe I have any symptoms of GCA/PMR, just some leftover things from the side effects. Like the start of a cataract and the popped achilles tendon.

[Lonsdalelass in reply to Mikb]

That's brilliant then! So good to hear a success story. We'll done you!

[Mikb in reply to Lonsdalelass]

Thanks!

[Mikb]

I am in Toronto, Canada. Just start a new post asking for rheumy suggestions for your area and you will get answers.

[Flosy]

hi,yes i have,iwas digose march of this year.started at 60mg now down to 10mg.singe being down to 10mg.i have no engrie and i very tired, fine it hard to do anything.