Do I increase dose?

[Alison300356]

I thought I was doing so well! Reduced all the way down to 2mg of pred stayed there for about 6 weeks then WHAM out of the blue got up Saturday morning (well struggled out of bed more like it) horrendous PMR pain in shoulders arms hips and thighs. Blood tests early in the week revealed slight over normal esr crp levels. Doubled my dose up to 4mg which within a couple of hours the pain reduced significantly. Four days later still have slight pain, do I front it out or should I increase by another mg? When I saw gp a month ago and mentioned I was in some pain he said to up dose and ordered blood test, can't get another appointment for 2 weeks. Any advice please!!!

[PMRpro Ambassador]

You ARE doing well! If it were me I'd be at 5mg but if you are improving well at 4mg that's fine too. And it sounds as if you have a very sensible GP!

[DorsetLady PMRGCAuk volunteer]

Totally agree with PMRpro, would be inclined to go for 5mg for a while, to clear things. If 4mg is only just managing then sensible thing to do.

After a week or so, you may be able to drop back down, but don't rush things. It is disappointing, but anything below 5mg is not causing any problems in the side effect line, so just take it easy, and listen to your body.

[SheffieldJane]

Poor you Alison, it must have been simmering away in the background. I would have done as you have done and now I would go up by another 1mg. A stitch in time etc. Of course nothing will show up in your blood tests, but symptoms rule with PMR.

[Alison300356]

Thank you for responses, I was so disappointed and angry to have to increase but now feeling a bit happier and am going to increase to 5 after all in the grand scheme of things its not really a high dose! GP phoned yesterday while I was out, typical!! I know he will tell me 5mg is the way to go, very lucky to have an understanding GP.

[MamaBeagle]

I know how you feel about being disappointed Alison. I'd got down to 3mg with no problems at all - then a flare - and after advice on here I upped and had to go to 7mg to knock it on the head. - that was about 3 months ago and I've used Dorset Lady's DSNS tapering and only just arrived at 6mg. I've learnt on here that it's better to be the tortoise and not the hare in the pred reduction stakes and that a low pred dose trumps PMR pain any day. Look after yourself.

[marigoldb]

Exactly the same happened to me, I was so pleased to get down to 2 1/2 mg, went back to 5 mg, and am fine. GP said stay at that for a month and then go down 1mg, but I intend to wait longer than that I think. This condition or disease has a will of its own!

[MamaBeagle in reply to marigoldb]

How true - you think you're doing well and then Whoops - it bites you in the bum!

[Alison300356]

Update. GP has phoned this afternoon wants me to stay at 5mg for 2 months then blood test before I try to reduce again. Also is booking me a Dexa scan. I think I'm in more of a rush to get off the pred than he is. So easy to talk to and seems to be very understanding of this awful disease

[Grants148]

Hi Alison,l know how you feel,l was happy on 3 mg,but my doctor was pushing me to lower my dose,l ended up having a bad flare and am now on 5 mg.,and rather nervous about lowering the dose yet.l have not been offered a blood test at all so top marks to your G P.l am hoping that 5 mg ., is enough as l am still getting stiffness in my legs,but maybe that is arthritis,unless l have a blood test l am non the wiser.Best wishes,l hope everything works out well for you in the end.

[Alison300356 in reply to Grants148]

Thank you, I think I am very fortunate to have a GP who seems to understand this awful disease. He has been so helpful to me right from the beginning of this horrible journey we are on. Hope you are feeling much better soon.

[Grants148]

Thankyou Alison .