Posted , 5 users are following.
I have had PMR. For four years and have been up to 20 mg per day. Last Nov2016 i started going down as i was on 10 mg for quite some time. Using 1 mg per month i became Prednisone free!!!!! It has been great but 3 days ago i woke up in agony . Cannot toll over in bed, neck back Hands and Knees are awful. Do i go back to the magic 5 mg or what. I have not talked to my Dr as he is away.
0 likes, 3 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
james82021 eileen06891
Posted
So sorry to hear about your pain. I had PMR in 1997, and was in misery for several months until it was diagnosed. I was on 5mg of pred for several months and finally weaned, as you were, one mg at a time. I never had the kind of recurrence that you described, but a couple of years later was diagnosed with myelodysplasia. I had no symptoms, but blood tests showed anemia. Both red and white blood count were down. My hematologist consulted with a renowned expert who suggested that I go on a maintenance dose of 5mg of pred. My GP who had been following me for PMR commented that I probably still had some residuals from PMR (backache, mainly) and that the pred dose would help that too. My hematologist assured me that a maintenance dose of 5mg would not be a problem, and I have been on it for about 8 - 10 years now with no untoward effects. You may want to ask your MD if such a maintenance dose would be OK for you. Because you were on 10mg for four years, weaning may take a lot longer than it did for me.But, boy, pred has been a lifesaver for me!
Cheers,
james82021
EileenH eileen06891
Posted
It is a not uncommon story - a few months after getting off pred - back come the PMR symptoms. You may need more than 5mg to start with the get the symptoms under control - as this sounds like a new episode and you don't know how active it is so you may have to start at a higher dose again. You could try 5mg and see what happens though - but don't be surprised if it isn't enough.
You do know there is a PMR/GCA forums here don't you?
Yuki50 eileen06891
Posted