I'm new to tell my story

[Anniefred]

I was diagnosed with PMR 2006 and was on 15mg Prednisolone reducing gradually to zero in 2008. My job was a care assistant and I kept working throughout. I retired in 2009. All was well until 2017 and am back on 15mg Prednisolone again for PMR. My CRP was high, and my pain got worse . In October I started to have neck aches and head pain, so went to GP for test to see if it was GCA, this went on for weeks and Dr saying no every time . Eventually on February 23rd 2018 my tongue and jaw felt like wood when chewing food, Dr then arranged a Rheumatologist and was sent the same day for a vascular ultra sound which confirmed GCA and told me it was severe. So I am started on 60mg Prednisolone and had to reduce every 2 weeks by 10mg. this did not work so had Methylprednisolone intravenously every other day for 3 days but still had a weird head so received a double dose which did work, and at last I was pain free. I am now on 2mg Prednisolone it is February 2021, I have been on this dose for about a year. Have tried three times to reduce to 1mg using methods I have found on this site my Rheumatologist also agreed, but unfortunately I cannot seem to stay on 1mg, so am on 2mg at present. I have found health unlocked invaluable and have followed lots your journey's it really helped me along mine, thankyou all. Anniefred

[YuliK]

Oh my Anniefred, you poor soul, that certainly has been quite an amazing journey you have been on.

At this stage, I don’t think you have to worry about the 2mg of pred. You could try reducing by 1/2mg and stay on 1 1/2 mg for a month, or even a little longer. No rush. As long as you have no difficult side affects then take it easy. Some people have succeeded by reducing 1/4mg at a time.

I’m not an expert and I’m sure other kind ladies will join me in giving their professional expertise.

Keep well.

YuliK 😷

[DorsetLady PMRGCAuk volunteer]

Hi, If you are okay at 2mg then stay there! Prof. Dasgupta, leading Rheumatologist recently said he keeps some of his patients at 2,5mg for up to a year.

1mg difference might not sound much, but it can be the difference between a good life and a miserable one....know what I’d chose.

Just for info I took about same time to get from 10mg to zero as it did to get from 80mg to 10....

...so no rush!

[PMRpro Ambassador]

Hi and welcome!

I'm sure you must have seen one of the comments about Prof Dasgupta's approach of keeping patients at 2 or 3mg indefinitely as he finds it reduces the incidence of relapses. He talked about it in a webinar he gave last summer for the charity - he was instrumental in setting the charities up, together with some ladies who met on another forum, and is an authority on PMR and GCA in particular.