What to do?

[Griggser]

At my last rheumy appointment we agreed to reduce my steroids from 19mg a day to 17.5 then by 2.5 every two weeks until I got to 10mg. This was to confirm the pmr diagnosis as I was not getting the pain relief I should have even at 20mg. I have been up to as much as 40mg but initially got very good relief at 15mg. Anyway now at 9mg and in agony so I think I have confirmed that I do have pmr. I had bloods taken this week, no results yet, so feel that I can increase the steroid dose. I have another rheumy appointment in a weeks time but I am in such pain and have had to go sick from work. I really think I should increase but to what level and should I consider splitting it by taking some in the morning and some later? Thanks in advance for your replies and advise. 😀

[11caroline29]

Hi Griggser. So sorry you in so much pain at 9mg and struggling to work. I have only managed to get from 40mg to 12mg with Mycophenolate and also in pain. Officially retired on ill health now. My esr and crp bloods have gone up again with reduction of steroids but my Neurologist says to keep reducing even at slow pace. Still waiting to see Rheumatologist since June 2014. Disgraceful I know. I guess you will probably be told to increase steroids to the level at which you last felt no pain which is frustrating as I am sure it has been a struggle to reduce to 9mg. However if it helps you to live a more pain free life it might be the better option. Best of luck to you.

[Griggser in reply to 11caroline29]

Thanks Caroline, I hope you get your pain under control soon.

[PMRpro Ambassador]

I have to say I don't see how a REDUCTION would confirm PMR. A lot of things will respond to high doses of pred, not just PMR. And just because you responded originally to 15mg (which DOES suggest PMR) it doesn't mean that is what you still have. Many people who are told PMR to start with have that dx revised later. Does PMR morph? Or does it just mean you have both PMR and something else?

However - where did you last have decent pain relief? That would appear to be where you need to be until the rheumy can find another answer.

[Griggser in reply to PMRpro]

Well it's been quite a journey! I've been up as high as 40mg but when I got back to 20mg the pain did start but not as bad as now. I did email the consultant last night and he has advised to revert back to 12.5 until I see him next Thursday. It's at this appointment that we will discuss the diagnosis and if pmr is correct.

[Griggser]

So saw my rheumy on Thursday and he agrees that pmr is the correct diagnosis. My crp levels had gone up to 24 and with the symptoms I was experiencing were enough to confirm this. We agreed that I should increase the preds to 15mg and he also wants me to try a different steroid sparing drug. I can't remember the name, I have tried methotrexate, azathriapine, and mycophenalte, so will need to see the letter from him next week. He did say that this new drug can affect the bowels and cause diahorrea and can also affect the liver so weekly blood test for a while and then monthly. Again this new drug will not show any benefit for about 6 weeks. I can't remember what he said about then reducing preds, so again need to see the letter from him (pred brain!) , however I feel I need to stabilise on 15mg for 4 weeks. Currently signed off work and so glad I am as its a real struggle just to do normal household chores, shopping etc. Can't believe how much pain I am constantly in especially in the mornings. My hips are really bad and my feet are also bad especially after driving, it takes a while to get going once I get out of the car!