It is normal to have had 3 years of 30mg prednisolone reducing to zero, followed by immediate flareup and repeat treatment? I'm now fed up!!

[nannyjc]

[trishyb]

Hi I m pretty new to PMR really as I was diagnosed last November and like you was started on 30mg Pred. I am now down to 13mg and hoping to reduce to 12mg next month. From what I have learned the flare ups can happen at any time and in some of the support groups it is suggested you take a low dose of pred to see you through the flare up and then reduce to 0 again (but very slowly) if you can. At the same time a lot of sufferers stay on between 1-2.5mg long term to keep them pain free. The low 'maintenance' dose of pred seems to be a good idea and works for many people. I hope this is of some help to you and so sorry you are not doing too well at the moment. Take care and gentle hugs to you.

[nannyjc in reply to trishyb]

Hello trishb. Thank you for your reply to my question. I haven't ever been really troubled by my PMR, but by the associated condition of Temporal Arteritis (GCA). The PMR and GCA have both come back within 3 days of having reached zero prednisolone, so it's been back to 30mg reducing each time. This has happened 3 times now.

I finally got to see a consultant on Monday, and he believes (without any further investigation) that I will be on prednisolone long-term, and it's a matter of finding the stabilising dose. He said to start on 6mg and work upwards by 1mg every few days until the severe headache and earache disappear. He seemed to indicate this might be around 10mg per day.

I do hope not as I feel this would be rather a high dose to be on long-term!! Perhaps others will have a view on this.

I hope you're feeling better. Keep going and chin up! x

[Polywotsit PMRGCAuk team member in reply to nannyjc]

Hi Nannyjc and Trishy. Yes, we do know of lots of people who find it very difficult to come off the steroids, and although doctors tell us we will be off them in two years, we have found that the average is more like four. Once you are down to about 5mg a day the rheumatologists don't seem to worry too much about side effects. However, you don't want to be on them too long term and it might be an idea to discuss with your doctor the possibility of you having your medication supplemented with a 'steroid-sparing' drug that would enable you to lower your pred dose or even come off it altogether.

[nannyjc in reply to Polywotsit]

Hello Kate,

Thank you for your reply. I am not happy to be going up with the steroids, but need to get rid of this bad headache and earache, which have been plaguing me since I got down to 3mg. I haven't been referred to a rheumatologist; only seen a consultant in geriatric medicine. Should I be asking for a further referral do you think? It has taken 3 years to get to one consultant!

Nannyjc

[trishyb]

So sorry you have to contend with GCA as well as PMR, it is something I dread happening to me and hopefully it won't as I know it can be a difficult condition to treat. I hope you find some answers and some support from others more knowlegeable. Take care x

[nannyjc in reply to trishyb]

Hi again. The treatment for both appears to be prednisolone, so hopefully you are already being treated for GCA even if it hasn't raised its ugly head. Mine appeared together so you will be OK with any luck! x