What to plan with Rheumy?

[kangaroojohn]

After four months I have my (10 minute?) appointment with the rheumy on Thursday.

I have made these notes as a basis to help me get my thoughts across to him and yourselves.

I am male, age 81. Symptoms started mid-Jan 2023.

I have had no pain symtoms since the first dose of pred, which was 15mg on 25th May.

I was tapering on a decrease of 2 then 1 per month, but stopped on 24th Oct as told to by the rheumy and have been on 5mg since then. Initially after stopping the tapering I had mood swings and fatigue but these stopped three months ago. My only current symptoms are those of blepharitis and possibly on-off blurred vision in my right eye, but these could be unrelated to PMR.

I feel I am having some side-effects from the pred- hunger and "active bladder" being the most noticeable.

My CRP was "less than 0.5mg/dl on 28/2/24,24/10/23 and 25/6/23

My ESR was 40 on 8/5/23, 12 on 25/6/23 19 on 24/10/23 and 16 on 28/2/24

I feel I am having the PMR mildly as my intial pain symptoms were not severe. I am therefore willing to take a chance as to whether a flare arises.

I would like to continue tapering by 0.5mg every four weeks from now and ask the rheumy if I can do this.

What does anyone think please?

[PMRpro Ambassador]

5mg is loads to keep PMR under wraps and in your place I wouldn't be as keen as you appear to be to get OFF pred. Get lower, yes, that is reasonable and I'm not sure why the doctor stopped you tapering.

If I were you, I would continue to taper, if 1/2mg at a time works for you, continue with that but I would now slow it a bit, to every 6 weeks maybe. As you get lower you are by definition getting closer to the aim, the lowest effective dose. And now your own adrenal function needs to wake up again - 5mg is still loads to suppress production of cortisol. So small steps and slowly is the way to go. You may not be scared of mild PMR pain but you would do well to be wary of adrenal insufficiency.

You can tackle the hunger aspect of pred by cutting carbs - the hunger is in response to spikes of glucose being released from body stores by the liver, which trigger insulin release and the blood glucose level falling to a low level suddenly - you crave carbs to top it up, If you take the carbs you can control out of the equation it often helps.

Are you also taking calcium supplements? They too can lead to bladder irritation. So can PMR if it comes to that, Not saying it isn't the pred - but it might not be.

[SheffieldJane in reply to PMRpro]

In addition to caring for your Adrenal function, I would be inclined to have a thorough eye health check up. I do this every few months, I am also prone to Blepharitis and occasional blurred vision. This type of check up can identify cataracts and signs of GCA and glaucoma. All potential concerns for us. Do mention your bladder function to the doctor if you haven’t already. You seem to be managing this pretty well. Good luck.

[kangaroojohn in reply to SheffieldJane]

Thank you PMRpro and Sheffield Jane. Re eyes, in fact I have had "the beginings of cataracts" for perhaps ten years. I also have my diabetic eye check coming up and will see if a check for GCA can be included. Re the bladder, indeed I am also taking Ca citrate, so I note your point about that, but I think the symptom arose before I started it