Does this sound like I've hit the wall?

[Hindags]

I've been on 8.5 for almost two weeks now. I take 8.0 DR at ten pm, and .5 IR breakfast. At 9.0 I was generally asymptomatic except for what I refer to as the weak Wobblies which generally hit late afternoon and then dissipated. The last two days my energy is all over the place. I still wake up fine, not stiff and able to do morning routine, but now I'm getting random bouts of thigh pain and weakness with sone feelings of nausea and an occasional shoulder twinge. My lower back seems to miss the Pred. It is complaining more like it used to before PMR and Pred.

My ESR was 18 today, which is quite low for me. CRP came in at 0.1. I started with ESR of 107 and CRP of 6.8 in 12/2016. In April I had a short lived bump to ESR 40 and CRP 2.8. I had been at 14mg at the time. My rheumy put me up to 20 for a bit and then back down. So both are holding steady, normal range, since inflammatory markers ticked up for a bit last April. I do think my inflammatory markers are reflective of my inflammatory status but I'm reluctant to reduce further for now.

I don't think going down to 8.0, which was/is the plan based on my last visit with Rheumy. It doesn't makes sense to me unless I get some understanding of where this new pattern is heading. On next Tues night OH and I have opera tickets. I'm tempted to go up to ten on Mon night to smooth out the next day, but if this is the adrenal wall, I don't want to send my adrenals a message that they can forget about trying to get going,

Would it make any sense to alternate 9.0 and 8.0 for a week, just taking DR Pred at night?

[PMRpro Ambassador]

I would go back to the 9mg for a few weeks and then try again. It doesn't mean you won't get lower - just not yet. I'd be surprised if it were the adrenal wall - you are really still at the sort of dose that should be OK - but as you get lower you are getting ever closer to the dose you are looking for. I didn't get below 9mg for any length of time for over 4 years (of pred, that is, 9 years of PMR).

Patience - trying to force a reduction at any stage tends to result in one thing: an increase in symptoms requiring a return to a considerably higher dose. Where just one or two weeks has washed out the gains you thought you were making forcing the reduction. It really isn't worth it - it was the tortoise that won the race, not the hare.

The adrenal glands are the least of your problems - if they are going to wake up they will still do so next month or the month after and one day of a higher dose isn't going to change that. That is why with a flare you can always try just a few days of a higher dose and go back to where you were. It is getting into a yoyo pattern with dose - especially below about 7mg that will confuse your body so it really isn't a good idea to force reductions for that reason alone.

[Hindags in reply to PMRpro]

PMRpro: Thanks so much. I got my CRP today, 0.1. I also edited my POST above to clarify my quandry. I have an appt. with my Rheumy on Monday. Not sure what to ask her now. What might she be able to tell me that will help differentiate: PMR, adrenal up&downs, steroid myopathy, etc etc etc. LOL. Is it even possible?

Oops. I forgot: Patience, Patience, Patience, Spoons, Spoons, Spoons, Pacing Pacing Pacing, Breathe, Breathe, Breathe. Ah, that helps!!!

[PMRpro Ambassador in reply to Hindags]

"What might she be able to tell me" - sorry to sound cynical but "probably not a lot..."

Steroid myopathy is fairly obvious: you will see your muscles getting smaller and increasing difficulty doing certain actions. The weak wobblies probably aren't steroid myopathy - they are just your body reminding you that you are asking too much of it. I have attacks - and it absolutely isn't steroid myopathy! I just feel totally weak and ill - and have to lie down. I can't even eat at that stage. And it will come on in the early evening after I haven't (apparently) been doing much!

[Hindags in reply to PMRpro]

PMRpro.

Thank you for that clarification. So very helpful.

[Daisychain12 in reply to PMRpro]

PMRpro I just saw this and I am intrigued. I have those feelings you describe yourself as having yet I think I interpret them differently. With panic. With perhaps over reaction. I wonder if I need to be more accepting of this illness. Perhaps my problem is not PMR but my complete inability to accept that my life has changed and I should not look at being pain free and very mobile as a reasonable aim xx

[PMRpro Ambassador in reply to Daisychain12]

That is probably certainly part of it all. You are in the VERY early days yet - and perhaps I had had enough time to realise that anything was better than what I'd had for the last 5 years! I do have an advantage though because I have worked in the medical world all my life and perhaps that makes it easier to get things into perspective. Plus OH had had cancer 26 years ago and it was a very near thing - all else pales into insignificance in terms of coping then.

Acceptance of "this is where I am, I have a new normal, let's work from here" is a very important part of living well with any chronic illness. Otherwise you spend a lot of time and energy fighting the inevitable - time and energy that can be so much better used for living well with what you CAN do.

[Daisychain12 in reply to PMRpro]

PMRpro I am not there yet. I realise that. I have been ill since my forties and have no idea what “normal “ is any more. So part of me keeps expecting to “ get better”. Which would mean how I felt in my thirties. I hear the distortion in my words but I am not feeling it in my psyche. Does that make sense? I’m not in reality. I see that. I also had cancer and thyroidectomy. I had severe meningitis and four lots of shingles. I had peri orbital cellulitis. But nothing matches the grinding despair of constant pain. I need to work on my psychological framework but my time is taken up with bloody medical appointments xxxxx

[PMRpro Ambassador in reply to Daisychain12]

It makes sense yes - but if you haven't been well since your 30s you have to get your head round your expectations. I feel really quite well even with PMR - and most of my limitations are associated with now being nearly 30 years than even my late 30s. Aging comes to all of us, whatever our health conditions, and it has unavoidable effects. Relative freedom from pain should be your aim now - and would be whether you are 65 or 35. And note I say RELATIVE freedom from pain. I seriously doubt anyone on the forum is totally free from pain whatever they say.

[Daisychain12 in reply to PMRpro]

Marvellous words. You are so sensible. I see I have to work on my attitude. It’s completely distorted. I wish I could just know how it is reasonable to expect to feel. Xxxx

[PMRpro Ambassador in reply to Daisychain12]

Forget the destination for the moment. There are too many corners before you get to the home straight. Take one step at a time - that is the way any journey starts. Like any big job at work - you would break it down into a tick list of achievable goals. It will go onto a second, maybe a third page, but eventually you get to that last page and, finally, to the last item. Job done.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with PMRpro, go back to 9mg and get stable (!) again. Even the small drop of 0.5mg can throw you out especially if you’ve had other things go on - Thanksgiving for example. Enjoy your Opera evening - and then maybe leave to after Christmas before you try again. I think it’s recognised that cold weather isn’t always conducive to reductions, so ease off the gas for the moment. What’s a few weeks in the great scheme of things.

[Hindags in reply to DorsetLady]

DorsetLady:

Thanks for the reply. We aren't cold here in CA. 70F today. Crazy weather. But this is just about the anniversary of the onset of my symptoms last year. So weird to have things tumble just now. Probably coincidence, but I have read that there is some theory that PMR has some seasonality to it.

[DorsetLady PMRGCAuk volunteer in reply to Hindags]

Could be. And apart from weather there are other commonalities.

Whatever caused it give yourself some TLC.

[SheffieldJane]

I see you, have already had the expert advice. I just wanted to ask if you put your feet up, literally, when the weak, Wobblies hit ? I do and within moments I am asleep. It gives me a bit of an evening.

[Hindags in reply to SheffieldJane]

Going to do that right now. Thanks again. You are so thoughtful.

[Hindags]

Thanks to everyone who has weighed in on this with me.

[AndrewT]

Dear Hindags,

I know that a lot have others, have given you, answers already however. Don't Dis-count the Weather, this may Sound Like a 'Cop Out' but....Let's look at this year, so far, Very wet in the early part, unusually cold in spring, now particularly warm and dry now. It certainly hasn't done my Rheumatoid Arthritis much good, I can assure you!

Just a thought.

AndrewT

[Constance13 in reply to AndrewT]

Weather makes a hell of a lot of difference with me. I have always suffered “under the weather”, even as a child. When I was 7 years old one of the male teachers always stood behind me in assembly because I fainted so often (headmistress then decided I should sit down (the only one in 200 pupils) - luckily there was no mobbing in those days.😏😏

I’m now 79! At least weather doesn’t kill you 😂😂