Late update to still in pain and depressed

[Mstiles]

When I last posted i was worried about my phone appointment with my GP and my pred prescription and having a discussion about tapering, etc. She had finally refilled all I asked for, I had messaged her and explained everything and included some of your very helpful language, thank you so much!! I had also included a picture of the DSNS taper plan for her.

Well the phone appointment was very good. We didn’t get into a long discussion about it, hopefully she seems to have accepted the need for flexibility-fingers crossed! I will see her again next month and if I haven’t reduced at all not sure how that will go with her.

In trying to sort out the neck and hip/sacral pain, she’s ordered X-rays of the neck which I haven’t had yet. I’m still having some night/morning pain which gets better as the day goes on.

Another issue we’ve been trying to sort is irregularity. She has me on psyllium husk powder for fiber, and Colace. Plus I take powdered magnesium. These haven’t done a whole lot. This time she added Miralax which works fine. The reason I bring this up is I’m wondering if the pain in the sacrum area is somehow related and if I should have any other tests to rule something out, or if this is just PMR pain. Confusing!

So my dilemma is what to do about tapering at this point. I’ve been on 13 mg for 6 weeks now. I don’t have much pain, no shoulder pain, I think the occasional neck pain if related to bad posture, maybe MPS. Stretches help and the pain goes away as the day goes on. Still some stiffness. The hip/sacral pain is still bothersome, not every day. Sitting makes it worse. Worse waking up.

I was down to 8 mg. when all this started. Now I’m back where I was a year ago at 13. Reading about TMZ??, (sorry, can’t spell it) on the forum and people having success with tapering, maybe it’s time to try something else to be able to reduce? Am I on a higher enough dose of pred now? Blood markers have gone down some.

Tests: 8/12

Sed rate. 31 mm/hr (0-25)

CRP: 1.3 mg/dL. (<1.0)

Tests 7/6

Sed rate: 36

CPR: 1.4

I’ve been on pred 2 1/2 years now, originally 40mg for GCA/PMR. Had a few flares.

I still have all the other stresses with my son, he now wants to leave California because of all the wildfires , plus possible evacuations! We’ve had to pack go-bags to be ready to go at a moment’s notice. It’s like a mini-move. I’m in Northern California. No fires near us at the moment, just a blanket of smoke and advice to stay inside. Plus the pandemic adding more stress to everything. Depression still lurking in the background.

Thanks in advance everyone for your advice and support.

[DorsetLady PMRGCAuk volunteer]

With all the stress, or potential stress you have, I would stay on the dose you are for the time being.

If Rheumy is looking into your other issues, then maybe get them sorted out and just be thankful she is listening to you regarding your PMR/GCA and tapering.

You cannot be fighting on all fronts!

Your sacrum issues may be partially due to digestive issues, see how that reacts as other problems are relieved.

[Mstiles in reply to DorsetLady]

Thanks Dorset Lady,

I don’t have a rheumy right now, the good one I had left the practice in June. Im relying on my GP At the moment. She’s the one that’s been prescribing my pred and that I was having difficulty getting enough pred, etc. She is listening so far but didn’t seem to know much about PMR, thought it was in the joints. So I don’t know how much help she would be if I need other tests or investigations into other causes of pain? Maybe I’m just worrying for no reason. But a jump up from 8 to 13 and then on it for 6 weeks is a lot with no progress in lowering the dose?

[DorsetLady PMRGCAuk volunteer in reply to Mstiles]

Well just because she didn’t know anything about PMR - doesn’t necessarily mean she’s rubbish at everything!

As yes I would normally agree with last sentence except for your particular trials and tribulations.

Do hope you get some answers soon.

[Mstiles in reply to DorsetLady]

👍💖