I have been in pain for many months, how much longer

[Zeusa]

After 6 months have now been put on steroids (yippee!) Are the early days on theses, trial and error, as it has taken, so far, three weeks and still no relief. All very frustrating and painful

[GreyOwl]

Hi Zeusa

Can I ask what dosage you are on? It could be that you need a higher dosage, When I first started on the steroids I felt like a new man! Unfortunately that didn't last but you say you have been taking the steroids for three weeks and I think you should have noticed some improvement by now.

[Zeusa]

Hi Grey Owl

Thanks for responding

I was put on 15mg for 7days then down to 10mg daily. Have now been upped to 13mg two days ago

[2watsons]

Sorry still in pain ,most people get some get some improvement ,in few days ,iwas put on them because i had P M R some years ago then now have giant Cell so was put on high dose 60mg to save good eye ,now on 9mg after six months .it would seem not working in your case ,oh dear back to Doctor maybe .Take care

[GreyOwl]

Hi Zeusa

As 2watsons said, I think you need to go see your GP again. There is no point in taking steroids if they are having no effect. Maybe they need to look at the diagnosis again and if they are certain you have PMR perhaps a slight increase in the dosage. I take it you don't have GCA also?

[Zeusa]

Hi,

Yes, back to the doctor, trust its not GCA. Many thanks for your comments.

[Celtic PMRGCAuk volunteer]

Zeusa

Did you have any relief at all in your pain within a couple of days of starting on your 15mg dose? This response is usually taken as confirmation that the diagnosis is correct. If so, then it is possible that reducing from that dose after just 7 days allowed the inflammation to take hold again.

It is generally recommended that we remain on the starting dose for at least 2-3 weeks. Then to really add to the problems, your dose was reduced far too steeply - a reduction to 12.5 would have been wiser and even then only if repeat blood tests had shown the inflammation to be under control and/or your symptoms improved.

Some people find that they need a slightly higher starting dose for 'just' PMR, and for GCA the starting dose is even higher at 40-60mgs.

If you download a copy of the British Society of Rheumatologists Guidelines for the Management of PMR, you will find it very helpful.......and take a copy to your GP as he may also find it helpful!

[Zeusa in reply to Celtic]

Thank you Celtic,

yes the 15mg did free me up a bit , maybe I was too enthusiastic when talking to the doctor so he put me onto 10. I have spoken with him today and he has put me back onto 15, so hopefully will be kept on these at least for a few weeks and he has told me to speak to him anytime i am struggling.

As you suggest I will look at the Guidelines you mentioned

Again, Many thanks

[Celtic PMRGCAuk volunteer]

Zeusa

Good luck back at 15 and I hope that if you are someone who had raised blood test markers at diagnosis, your GP has arranged to repeat the tests BEFORE your next reduction to check that the inflammation is being controlled by the dose. If you did not have raised markers, then obviously you will have to be guided purely by how you feel. Do let us know how you get on.

[Zeusa in reply to Celtic]

Will do.

[Polywotsit PMRGCAuk team member]

Hi Zeusa

The Bsr guidelines can be downloaded from the Resources/Public section of our website pmrgcauk.com. Just scroll down and you will find them. New research is indicating that people who are of lower weight generally respond better to the starting dose of steroids than bigger people, so depending on size, if a patient doesn't respond well to the steroids it either calls the diagnosis into question, or it might just be that a higher dose is needed. (You won't find this in the guidelines by the way). If the higher dose doesn't do the trick, it would be worth discussing a possible referral with your GP. Good , uck.