How much discomfort should I tolerate??? Recent flare @ 5mg. My Rheumy put me back to 10 mg. and I feel better and have less pain overall.

[trexjo54]

On a scale of 1-10 I am @ 3-4. She also added methotrexate @ small dosage once a week along with folic acid tablet daily. I was @ 8 while @ 5mg. I still feel tired and achy and a little sweaty, is this normal? My question is : Should I be on a higher dose or just be happy that overall I am feeling better???

[Celtic PMRGCAuk volunteer]

trexjo54

Reading through your previous posts, it has become quite clear that your very fast reductions in the steroid dose is the reason for your ongoing problems.

I know you say that you have been impatient to get off steroids, but there is no fast and easy route to remission. The steroids (or any other medication for that fact) do not cure PMR, they just control the inflammation that causes the symptoms. PMR will go when it wants to - that can be 2-3 years for some and longer for others, with a few people remaining on a low maintenance dose of steroids for life. And it is recognised that as many as 60% of sufferers will have flares over the first 2 years.

The 5mg point does seem to be a major sticking point for many people - it was for me, with a major flare at 3mgs. I increased back to 10mg and when I got back down to 5mg I remained there for many months to ensure that this time the inflammation was well and truly under control before embarking on another reduction.There are very few effects on the body at this dose, if any. I then continued reducing in just half a mg decrements, tapering really slowly on certain days of the week and taking several weeks to finally reach the lower dose, which gave my adrenal glands time to kick back in with their normal production of cortisol (natural steroid) as pre-diagnosis.

As for your question as to how much discomfort you should tolerate, that is an individual thing and can also depend on your lifestyle - some people will become pain-free down through the doses but for others there is always some residual discomfort/stiffness, particularly first thing in the morning but this should ease up as the day goes on. It is important not to overdo things on a good day as you can pay for it the next day; equally important is the need to take things very easy immediately following a reduction in dose.

Did you 'Google' the British Society of Rheumatologists Guidelines for the Management of PMR as suggested previously? When reducing below 10mg, 1mg a month is the very most to attempt, and once below 5mgs you should remain on each dose for 2-3 months, whereas you state in one post that you had been told to reduce by 1mg a week - if it was me, I would be seeking the opinion another rheumatologist!

[trexjo54 in reply to Celtic]

Celtic, thank you so much for your valuable input!!! I am guilty of overdoing it on good days as well as on days when I do not feel so good. You are perfectly correct as I can now look back and see how much I overdo, especially daily exercising, which involves weight lifting and cardio. Since I am retired it is my main form of exercise and I love going to the gym. I am now trying to lift weights one day and save my cardio for the next day. I just am having to scale back as I am an over achiever by nature. You are so right about the reductions also, I am learning that the hard way. You know us men have that " stupid gene " that makes us want to physically over achieve even if it kills us. I am guilty as charged!! Your input is helping me very much. I will slow down as best I can along with slower reductions in my Meds......

[Polywotsit PMRGCAuk team member]

Hi trexjo54 and Celtic

Just a quick note to say that the BSR guidelines are downloadable from the resources section of our website -

pmrgcauk.com/documents/BSR_...

[trexjo54 in reply to Polywotsit]

KateGilbert,

thankyou for the info.....

[Celtic PMRGCAuk volunteer]

Kate - doh! Of course they are. Thank you.