Update: pain now as well as fatigue….

[Nextoneplease]

Hi all 😊

I posted recently about awful fatigue on 6mg, and the suggestion from both GP and rheumatologist that I “may have steroid dependency/ adrenal insufficiency “ so I’ve been told not to go below 5mg.

Actually there’s little chance of that atm anyway as I am now also in pain. My daughter was ill with flu last week (or Covid?) and was away with our 7 year old grandson, which worried me a lot. Anyway on Friday she finally made it home and I went over to keep said grandson company while she collapsed into bed. Didn’t do much, watched videos and ate a light meal, then played a kind of very lightweight game of kids’ darts. Then home by early evening.

Woke up next morning totally exhausted and have been a couch potato / in bed myself for 48hours. Plus, I now have excruciating pain in my right shoulder, upper arm and wrist (the dart throwing arm!). I do have severe OA in those joints due to previous fractures, but it’s also the place that PMR started nearly four years ago.

It’s taken me all day to get up the energy to post this. I’m using codeine tablets and ibuprofen gel on the joints, which does help but doesn’t last…

I’m so tempted to go up a couple of mg of pred but don’t want to yo-yo. Feel I need to stay at 6mg in order to kick my adrenals into noticing…..but just want to comfort of more pred.

Any advice would be much appreciated 🙏

Many thanks xx

[herdysheep]

Just wanted to say that sounds miserable and to commiserate.

Afraid I haven't got any sensible suggestions, other than to rest as much as you can. Even for a short space of time, you did more than you have been. Might it be DOMS with dart throwing? Could even be the start of flu.................. Rest, rest, rest with tlc

[Nextoneplease in reply to herdysheep]

Thank you so much for this kind reply herdysheep 😊

I did think of DOMS but the pain was so severe I couldn’t believe it was that. However, it’s a bit less this morning, so I think that’s at least part of the problem.

The worst thing remains the total exhaustion. I am sleeping very deeply (albeit waking occasionally) and having almost scarily vivid dreams. I wake up (eventually, often prodded awake half way through the morning) tireder than I was when I fell asleep….

Again thank you so much. This is really getting me down I’m afraid x

[PMRpro Ambassador]

At 6mg the effect on your adrenals is so-so anyway, they won't be doing at lot at that dose. But if this IS a flare, ignoring it will probably end up with you having to go back to a higher dose to sort it out which will take longer and have more effect. I would at least try the flare protocol - add 5mg for a week or so and drop back to the previous good dose. You can stay at the higher dose for up to 2 weeks without having much effect on adrenal function.

However - if your daughter developed flu/Covid while away, it is perfectly possible you were infected just before she left and it is just appearing now. So don't discount that.

[Nextoneplease in reply to PMRpro]

Thank you PMRpro 😊

There’s no sign it’s flu or similar, thankfully!

Seems to have an element of DOMS as the pain is much better this morning, thank goodness. As I said to herdysheep, overwhelming fatigue is the main problem again (plus general joint pain that could be/probably is OA.

I had taken an extra 2mg before I read your reply. Not sure how I arrived at that, classic compromise I guess. However if it is adrenal problems I have, I should t be doing even that, should I?

Honestly I know that for QOL I’d go back up to 7mg (after treating flare) but then how do I get off pred?? It seems as though I may not be able to taper below 7mg and maintain any QOL 🤷‍♀️ Frankly already dreading Christmas - and a big party we’ve planned for next June for various anniversaries. How on earth do I get out of this situation whereby exhaustion rules my life??

Thanks Pro x

[PMRpro Ambassador in reply to Nextoneplease]

If it is due to lazy adrenal function that should improve with time. Personally, in the entire 16 years I have been on pred QOL has been my primary concern. I was young when PMR appeared on the scene, still 51 (just), and I had 5 years before I was given pred and had a minor miracle in under 6 hours. I'd had quite enough of pain and disability, unable to do things most others in their 50s could do. Then came my husband's illness and Covid and I had too many responsibilities with him to not be able to function. Many years of pred may result in dying earlier - but at least these years have been rather more comfortable than without it!!

Getting off pred that leaves you unable to have a decent lifestyle really doesn't sound like a good exchange.

[Nextoneplease in reply to PMRpro]

“Getting off pred that leaves you unable to have a decent lifestyle really doesn't sound like a good exchange.”

Indeed and exactly! The trouble is not knowing how long the impaired QOL is likely to continue…..if I knew it was, say, six months at a fair estimate, I’d tell the family and give it a go. But there’s no way of knowing, and as you say, every week or month that goes by like this is potentially a week or month never regained….

Such a difficult decision. Maybe I’ll contact my GP soon and tell her how I really am (not how the rheumatologist presented me in his letter! ie “PMR gone, just need to manage OA ….oh and by the way, don’t let her go below 5mg, she may be steroid dependent”!!! ) 🧘‍♀️

[PMRpro Ambassador in reply to Nextoneplease]

I mean really - HOW does he know the PMR is gone? He can't, not unless you can get off pred altogether. And to be honest - some of what you describe could well be PMR swimming just below the surface.

[Nextoneplease in reply to PMRpro]

That’s right, he doesn’t know! Just saw OA nodules on my hands and poorly feet and decided that was that! I was perfectly fine on 7mg until my appointment with him…..he’s not ‘my’ rheumy btw, I’ve never seen or spoken to the same one twice. They reckon to do annual appointments, alternately on the phone and in person, and have lots of locums, I think.

[PMRpro Ambassador in reply to Nextoneplease]

Yeah - well I'd be going back to 7mg if you feel OK there. After all, if you need 5mg for your lack of adrenal function - you are really only on 2mg for the PMR aren't you????? If he believes your PMR has gone, he could try believing that too ...

[Nextoneplease in reply to PMRpro]

lol 😂I love this PMRpro!

The longer this goes on, the more likely I am to go back to 7mg I think 😊

I’ve really given the lower doses a good try but they make me feel life is barely worth living 😟Will contact ‘my’ GP and try to get her support if I can- I have a feeling I’m going to need it….

Many thanks PMRpro , you’re a star ⭐️x

[PMRpro Ambassador in reply to Nextoneplease]

It might be worth bringing up the mental health aspect. Constantly being in pain and feeling unable to live a life is very depressing. You aren't alone in that - Longtimer has exactly the same problem. At 7mg she is able to do something, at 5mg she is housebound and non-functioning but the doctors insist she stays at 5mg.

[Nextoneplease in reply to PMRpro]

Oh, I’m sorry to hear that (for Longtimer) 🥺

And yes, I think you’re right, the situation does affect my mental health, and I am rapidly becoming almost housebound. So I’ll mention that when I contact the GP. Fingers crossed….🤞

[sidra1968 in reply to Nextoneplease]

My DOMS can be pretty bad, and it appears that even doing a little bit of anything new (muscle wise) sets it off now.

[Nextoneplease in reply to sidra1968]

Thank you Sidra 🙂

I’m sorry to hear that your DOMS is bad too - honestly I felt almost as bad in my right shoulder etc as I did before diagnosis and the beginning of pred treatment! It’s quite a lot better today thankfully but mental and physical fatigue remains…..🤷‍♀️

All the best to you x

[sidra1968 in reply to Nextoneplease]

It is draining mentally because it makes you "worry" all over again. And the wild thing to me was, when it happened to me like 6 months ago (I was working at the time), my back got so bad it hurt to take a deep breath. It was a new left mid-back area and the area did make sense as I had to bend down and grab trays, but WHY did it start after 5 months of the same motion..why not at the beginning of the job? It did go away with rest and resigning from the job due to a torn rotator cuff. Kind of how I know it's DOMS. I think I also have Myofascial Pain Syndrome, which gets triggered by the DOMS or is part and parcel of it all.

Right now I vowed to take it easy for 2 weeks straight and see how it dissipates. Sure wish we could take ibuprofen or naproxen for a few days, I think it would help. I just ice it instead.

[PMRpro Ambassador in reply to sidra1968]

You can - providing you also take it with food and a PPI for stomach protection.

[sidra1968 in reply to PMRpro]

Yes, I have taken some as a "one-off" here and there with food. Might try it today, actually. Thank you

[PMRpro Ambassador in reply to sidra1968]

It is persistent, long term use that is the major risk. I found that my low back problems were helped by an 800mg flooding dose od ibuprofen and sitting with heat over the affected part and the relief often lasted 24 hours with no more medication. It is important with ibuprofen to use this flooding dose to occupy all the receptors otherwise it is far less effective.

[Nextoneplease in reply to sidra1968]

Good luck Sidra, it’s difficult isn’t it? (I’d have used another term but thought best not to!)

Hope you feel better soon xx

[Louisepenygraig in reply to Nextoneplease]

I'm tapering very slowly - I'm on my way down to 6 from 6.5 now and so far I've found that I do get very tired but I eventually seem to adjust to it. I would like to get down to 5 if I can, I was nearly there 18 months ago but I had a severe RTA and I was in hospital for 2 months. They put me up to 10 to get me able to get out of bed without fainting and gave me instructions to taper by .5 mg a month. I thought it would be a doddle but I still got stuck at 7 for quite a while because of fatigue and dizziness. I agree with PMR pro that QOL is the most important thing for me now. I'm just about 78 now and I'd rather enjoy life rather than worry about a couple of extra years here or there!

[Nextoneplease in reply to Louisepenygraig]

Hi Louisepenygraig 😊

Thank you for your kind and helpful response. I’m so sorry to hear about your car accident - that must have been quite something and I hope you feel better now x

Re the pred, I too am reducing from 6.5 to 6….in fact this is week four of the taper so I should be on 6 all week. I thought I was doing well until week 3, when this current overwhelming fatigue hit me. Also some pain, which I’m beginning to wonder may be PMR itself, not ‘just’ DOMS or adrenal problems….

I wonder how long your periods of tiredness last? This feels endless, but in fact is probably about ten days, although it is pretty extreme! It would be interesting to know how quickly (or slowly) you get over each tiredness bout.

I agree with you about QOL. So far I’m thinking this is all too extreme, and I’m going, like you, to have to go back up to 7mg.

All the best and thank you again xx

[Louisepenygraig in reply to Nextoneplease]

I'm not at all sure how long the periods of tiredness last. I have fibromyalgia as well which doesn't help so my QOL is compromised by that. Both times my sticking point has been at 7mg. As I remember it my main problem with 7 the first time was tiredness but this time it was a tendency to feel dizzy when I got up. In each case I've stayed at 7 until all these symptoms have passed. I do have some rather scrappy records which show that this summer I was on 7 for a couple of months but that may have been because I had two or three weekends away and I never taper at times like that. I wish I could be more helpful but, in the absence of any pmr symptoms once I've reduced by 0.5 mg I've stopped there for as long as I've felt necessary. I used to set mental goals, eg I'll be at x by Christmas but I don't think like that at all now

[Nextoneplease in reply to Louisepenygraig]

Thank you for this 😊

I find that the very fatigue itself makes it hard to remember how long it or any pain have lasted - all I can do is collapse in a heap and the last thing I feel like doing is recording it!

I’ve sent an eConsult to my GP this morning and am hoping to work on this with her. She’s a new GP as far as I know - I haven’t had a named GP for a couple of years so have been struggling on without a doctor’s support 🤷‍♀️Thank goodness for this forum 😀