PMR Flare

[Gimme]

So I think I might be in full flare.

Last September, I was told to taper off pred. I ignored what I was told about being down to zero by the end of the year as I considered it unrealistic and went at my own pace. By mid Feb, I was hovering around 3/2.5/2 mg and by then, my legs, hips and back were so stiff and painful that I kept falling over and having difficulty getting back up again. Yes, I know already too fast and I should have listened to my own body, but still a lot slower than the rheumatologist said and I can't undo what is done.

Saw GP mid Feb and he told me to go back to 4 mg. I persevered for a bit, but it was doing nothing and I went back to 6 mg, which is where I last felt well, and I felt like I was still getting worse. Since Friday, I am back on 10 mg. That fixed most of the pain and stiffness, but I am absolutely wiped out now. I went for a blood test yesterday and I had to go home and sleep to recover. I am back to the heavy legs and arms, no energy and sleeping all the time, even if the stiffness and pain are more or less under control. I am not expecting to be able to stay on 10 mg for more than a few days longer, before the pred starts screwing with my head again, like it did before. I am already having the nightmares.

I want to kick myself. I got down from 15 mg to 7.5 mg very quickly in the beginning, due to the psych effects, and then my PMR was stable on 5-6 mg from March until October of last year. Luckily, I seem to have landed on what was back then an effective dose. I think that that is probably the dose that I need to be on long term for the forseeable future, but not sure how to go about stabilising myself again. However, I can't overlook the possibility that my PMR may actually be getting worse. I suppose I ought to go back to GP, but then I will have to admit that I raised the pred dose again twice. Where do I go from here wise folks?

As an aside, DEXA scan a month ago, but 8 week wait to get the results. Blood test yesterday to check Hba1c and ESR, not that I am expecting a raised ESR as it never has been throughout.

Thanks in advance. x

[DorsetLady PMRGCAuk volunteer]

You know the flare protocol, but if you really cannot stay on the increased dose long enough to get your PMR back under control, I'm not sure what else we can suggest... other than back to GP...sorry. 🌸

5 or 6 mg does sound "your" dose - and does that mean you don't get any side effects from Pred?

[Gimme in reply to DorsetLady]

Thank you, DL. More or less the conclusion that I came to.

I'm going to try and stick with the 10 mg for a bit longer, until I feel like I am going bonkers again and then I will have to reduce.

It's really disappointing. I'm right back where I started. Though I did get to some kind of equilibrium before, so no reason why I shouldn't get there again. I've got to try and stay positive, but am feeling a bit defeated atm.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

I’m sure you are feeling defeated - and deflated -and obviously much more difficult when you know the ‘solution’ but it has such an adverse affect on you personally.

You will get to better place again - but not as easily as others.🌸

[Gimme in reply to DorsetLady]

The GP that I like did mention sending me to the rheumatology team when my DEXA results come back. If he does, I'm going to ask him to send me to Vanessa Quick's team at Luton and Dunstable. It's only just down the road for me.

I think that part of what gets me down is such poor access to care and the support I need. The GP who originally diagnosed me is nice and is the only person who has been consistent. At the beginning I was passed from pillar to post and they all contradicted each other. The rheumatologist treats me like I am a complete idiot. I always come away feeling like I have said or done something wrong, though it occurred to me today that he might the old school type that can't be bothered to take old women seriously and it was nothing to do with me. The AI triage tool they use is useless and I have real difficulty in getting to see my preferred GP. Last time I asked for an appointment with him, I turned up at the surgery to find that it was actually a physio appointment. So from feeling unsupported by the medical team and living alone, I either sit and cogitate at home or come on here to whinge. It's very isolating.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Good idea about VQ... hope it works out for you... and yes it can be very isolating... but we never complain about a whinge..😊

[Sharitone in reply to Gimme]

Yes, really disappointing. But you are not alone!!!💐❤️Sounds like you need a treat. How about some nice little labour-saving device?

[Gimme in reply to Sharitone]

Good idea. A personal slave would do nicely!

[Gimme in reply to DorsetLady]

I forgot to say, at 6 mg, no side effects that are not manageable.

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Good…

[PMRpro Ambassador]

I would have had the same conversation with you had I replied earlier - been in and out all day!

Your only option seems to be to get a rheumy who will try steroid sparers of some sort since you can't tolerate the pred - you had done so well, such a shame you pushed the envelope too far and it all went pear-shaped.

[Gimme in reply to PMRpro]

I thought that you must be busy as I hadn't noticed you pop in today.

I've decided to play it by ear over the next few days. If I am going to go loony tunes again, I reckon it will most likely happen over the next 48 hours, and apart from the nightmares, I seem OK atm. My anxiety is manageable. Fingers crossed that a few more days of 10 mg will clear out the inflammation, and then I can head back towards a lower effective dose.

Something else has just occurred to me. That spasm in my jaw and face, that I have complained about on and off, has gone away since I went back to 10 mg.

[PMRpro Ambassador in reply to Gimme]

I was here before you this morning!!!!! 6,30am UK time. I don't always reply at all if DL or Snazzy have already said what I'd say