Low Dose Pred

[Mintymow]

Whats the lowest dose of Pred anyone is taking for either PMR or GCA and still finding it a benefit.

[optimist-ok]

I am on 5mg a day &I have been told I will probably stay on this dose now after getting down to 2 mg but with flares. HadPMR/GCA foe nearly 4 yrs.

[PMRpro Ambassador]

I'm on 5mg, have been to 3mg but am definitely better at 4mg and have just been to China for 3 weeks so was making sure! It worked - I have had no problems at all despite climbing many many steps and walking longish distances each day. We went out in the morning about 9am and returned in the late afternoon so I was on the go all day, often in heat in the low 30s and high humidity.

However - there are people who have been down to as low as 1mg/day and were persuaded by their rheumy to stop as "1mg can't be doing anything". Within a couple of months the PMR symptoms were back - and the ESR/CRP raised. Now, you might be forgiven for suspecting there was an element of placebo effect - but thinking won't raise your inflammatory markers! Very good doctors and rheumy nurses do appreciate that even such a low dose is achieving something. How, no-one knows, but pred has an effect on the neutrophils (one of the white blood cells) and they have been found to be present in tissue in GCA - maybe even such a low dose keeps them in check.

[Celtic PMRGCAuk volunteer]

Although off Pred now for about 3 years, I would say I still found 1mg of benefit in spite of a rheumatology nurse telling me it wouldn't be doing anything. When your body has been on steroids for a very long time, it can notice even the slightest withdrawal, as many of us have found. Plus remaining on 1mg or even 0.5mg for a good amount of time helps to get you through that period post-steroids where the body can take up to a year or more to totally recover after hormones etc have been disrupted. Even if there might be a psychological element to this, then if it works, don't knock it, I say!

[Hidden]

I have just weaned myself off pred after being on a low dose for around a year. My joints are very painful and I am having great difficulty sleeping because of the pain. I am amazed at the difference that even 1 mg of pred can make.

( PS I don't have PMR/ GCA but another type of Vasculitis ).

[greenheath]

Hi Mintymow

My rheumy has been trying to reduce my Pred steadily over 3 years and I recently went right down to one mg per day. All my pains came back! So now I'm back on 5mg per day. The pains have gone and he's monitoring the situation carefully. I see him every two months (when he always takes blood tests) so I expect him to reduce me to 4 mg next time we meet.

Take it slowly and good luck.

Greenheath

[Grimo]

Hello I have GCA since early November 2012 and I am now down to 2 pred a day.

Feel absolutely fine, Walk lots and swim.

The only pain I have is a twinge in lower back, which I have had for about 5 years, I am 72' and going for my blood test in the morning for my decrease from 3 to 2 daily pred

But if I get stressed over anything I do get a headache, but only for a few mins.

[pollyg263]

I am on 1mg with a l ittle pain have been on this dose for about 1 month, would this pain be still withdrawal symptons, or is the pmr trying to return

[Celtic PMRGCAuk volunteer in reply to pollyg263]

It could be either, Polly, or it could even be due to something other than PMR such as osteoarthritis. If you are someone who had raised markers of inflammation at diagnosis, I assume the ESR and CRP blood tests have been repeated to see if they reveal an answer? If they are raised, then you will need a small increase in dose. Certainly, don't attempt to reduce anytime soon - when I was first diagnosed some years ago, the recommendation was to stay at each new dose below 5mg for 3 months. Since then, many of us have found that tapering very slowly from each new dose to the next over several weeks (in my case over 7 weeks) can and does prove successful - I was so sensitive to the reductions that I tapered in just half mg decrements, taking the new dose on one day of the first week, two of the second, three of the third, etc.