Bad head

Hi Tricia I'm the same, bad neck, also I just can't get comfortable in bed, what ever side I lie on my shoulders and upper arm on the left side is so so painful so I'm not getting any sleep. Even if I lie on my right side my left hand shoulder, neck  & arm hurts so much. Do most of you lovely people on th forum suffer with pain on the left side

Oh dear Tricia, It is only a month ago I think, when you were at 6 mg and not feeling brilliant then.  Maybe you need to go back to a level when the aches and stiffness were at an acceptable level.  As Eileen always says, the idea is to get down to a level where you feel comfortable not necessarily down to zero.  As you said earlier, it is trial and error.  Hope you get things sorted.

Hi tricia, so sorry to hear this. You said you got down to 5mg. very slowly, so how long did you stay at 5? I'm sure others can say more helpful things re. what you should do but going to the doc. is a good start anyway.  I'm at 5mg myself now and your story could well be mine in a few weeks . . . I think I remember Eileen saying that 5mgs is still a low dose and some people just don't manage to go below this. . . Don't get too down about it, it'll be sorted.  Sending you kind thoughts. 

As well as the reminders that you are not heading relentlessly for zero...

can I also suggest the search for other forms of help?

If the pain is one-sided, or not entirely PMR-shaped, do consider it might be something else. Having PMR does not excuse us from other problems - and some of them reappear as we reduce the pred dose after being masked at higher doses. And I have waxed lyrical in that context SO often!

I have some back pain and tingles in the shoulder blades at the moment. I'm not entirely convinced it is plain PMR - and will be making an appointment with my Bowen therapist soon.

Before I would ask for a new rheumy appt I would try going back up the dose just a small amount first. If that works - you have your answer: you are not yet ready to go that far down.

Tricia, you could try 7mgs just for a few days to see if it helps.  If it does, then it will prove that somewhere along the line tapering to 5mg is a step too far for now.  5mg is such a common sticking point, that it might be worth remaining at 6mg for a good couple of months before trying any further.  Frustraing, I know, but quality of life is more important.

Thank you all so much for your kind comments. In the beginning I had an MRI scan on my neck and they thought I could have a touch of arthritis as well as PMR.

i was on 5mgs for about 2 months, then went back to 6. I know my Doc tomorrow will be reluctant to up my dose but I can't stay feeling like this.

Can't seem to find a Bowen therapist very near to me Eileen but will certainly try. Thank you once again for your help.

I have been on Pred since Nov 2013. Went to the docs this morning and my bloods are down to 1. So doc gave me CoCodamol for my head. Said to stay on 5 mgs of Pred.

I live in Christchurch Dorset UK