Reducing again - but not feeling too good 😞

[jules1955]

Hi everyone, I am now down to 4mg Pred using the very slow reduction method, but am feeling the dreadful fatigue, absolutely no energy at all, and don’t want to do anything. My shoulders / arms are achy and sometimes uncomfortable in bed and TBH I’m feeling a bit sorry for myself. I’ve been trying to eat healthy and loose weight and I have osteoarthritis in both knees which makes mobility painful and sometimes a chore + the weather does not help. I have been on Prednisilone for coming upto 8 years now and wonder will I ever be free. So shall I soldier on and hope for the best for another few weeks ? Or go back up in dosage again ? Love to all you PMR ers ❤️❤️❤️❤️❤️

[SnazzyD]

Sounds like how I was when my adrenal glands were probably at their lowest ebb. I often had fluey aches in my body and my neck and shoulders were the first to squeal. No easy fix; I just lived like a shadow and it gradually got better over a number of months. I was reducing by 0.5mg over 6 weeks plus at this level. At 4mg you may well be eligible for a Synacthen test or at least an early morning cortisol test. It was quite a disappointment to be feeling so low so near the end.

At what dose did this start?

[jules1955 in reply to SnazzyD]

Hi SnazzyD, thank you for your reply. I started at 15mg December 2015. I have tried to reduce a few times. Stayed at 7mg for most of the time, below this always brought problems. I have been down to 4/5 before. Maybe I will ask for the adrenal function test.

[SnazzyD in reply to jules1955]

The morning cortisol will tell you what level you have got at that moment in time with no Pred in the system. The Synacthen test mimics the pituitary gland in the brain shouting at the adrenals to work. It doesn’t tell you if your glands are permanently one way or the other, but it can tell you why you feel so rubbish for how.

[jules1955 in reply to SnazzyD]

Are you off Pred now ?

[SnazzyD in reply to jules1955]

yes, since Aug 2020.

When you say it always brought problems, do you mean PMR or adrenals?

[jules1955 in reply to SnazzyD]

Both, sometimes pain was worse than the fatigue.

[SnazzyD in reply to jules1955]

I found pain was never far away and it was terribly easy to over do it with an activity like carrying some shopping. I had GCA and not PMR and thought it was coming on but in time it too fell away. The devil is trying to work out what is what.

[jules1955 in reply to SnazzyD]

Exactly ❤️

[DorsetLady PMRGCAuk volunteer]

Agree with SnazzyD sounds very adrenal ish - have you read this -

healthunlocked.com/pmrgcauk...

[jules1955 in reply to DorsetLady]

Thank you, makes it a bit easier to understand what’s going on ( never knew they sat on the kidneys 😳 )

[DorsetLady PMRGCAuk volunteer in reply to jules1955]

see - you learn something new every day - whether you want to or not🤔

[jules1955 in reply to DorsetLady]

😭😭😭

[Frewen1 in reply to jules1955]

Hi Jules 1955 and Everyone, I'm joining this discussion a little late, but wanted to say my current symptoms absolutely chime with yours, except, like Snazzy D, my problem is GCA. Down to 4 mgs, having twice reduced from 60mgs since leaving hospital in August 2020. Permanently sore, tired eyes, absolute exhaustion, and now joints and muscles all aching - hard work walking down the street, but I force myself to keep moving and go out and about when I'd really just like to lie down and sleep all the time. (But that, I know, would be a bad idea). (And no, it isn't my age, as helpful people like to point out... it's developed since I came under 6/7 mg Pred, ie a couple of months ago.). I shall ask for the Synacthen test at my next appointment with Rheumy in late April - to what avail, not quite sure. I don't quite know what can be done, except increase the steroids again? Nooo!! Sorry to be going over a regularly ploughed field, but all the reading of other peoples' case histories doesn't prepare you for when it's utterly personal to you, yourself, somehow. Warmest wishes to all, Karen x

[jules1955 in reply to Frewen1]

Hi Karen, thanks for reply, I have spoken to my GP and she was reluctant to do any tests re adrenals at the moment and said hang in there (on 4mgs) for a couple of months and see if they kick in. I, like you, do have to force myself to even go a little walk at the moment. ( use it or lose it ) good luck to you ❤️❤️

[PMRpro Ambassador in reply to jules1955]

Ask if she will do a basal cortisol even if she won't request a synacthen as she is right it is on the early side. But the basal cortisol will give you a bit of baseline info to see how things proceed

[jules1955 in reply to PMRpro]

Thank you for info 🙂

[Frewen1 in reply to jules1955]

and you too! X

[Frewen1 in reply to jules1955]

🙏💐🧡

[PMRpro Ambassador in reply to Frewen1]

All the synacthen test will do is show if the adrenals can produce cortisol when kicked hard chemically - not whether they are doing do on a daily basis. As a start it is probably worth asking the GP to do a basal cortisol level - cortisol on a blood sample taken between 9am and lunchtime. Below 100 is definitely adrenal insufficiency still, above about 450 is normal (unlikely yet) and inbetween gives some indication at this stage of whether anything is stirring.

[Frewen1 in reply to PMRpro]

thanks very much.. as usual…

[PMRpro Ambassador in reply to jules1955]

ad-renals, adjacent to the renal organs, the kidneys

[HeronNS]

You probably don't want to increase until you have test(s) to figure out the status of your adrenal function. I've been on pred about the same length of time as you but was able to taper without triggering PMR pain to a lower level than you have. But I do remember 4 mg quite clearly. That's when I felt I was walking through water for weeks. Family and I went for long walk along one of our local trails. I don't know how far we walked because I'd forgotten my pedometer, but it must have been for a couple of hours, with nowhere to sit and rest for a bit, and I was really worried I wouldn't be able to walk all the way back to the car.

Have you tried Flexiseq to relieve the knee arthritis?

flexiseq.com/pages/flexiseq...

[jules1955 in reply to HeronNS]

Thank you for your reply. Yes have tried Flexiseq but didn’t do much for me. I have been taking ibuprofen with paracetamol when needed.

[jules1955 in reply to HeronNS]

Are you off Pred now HeronNS ?

[HeronNS in reply to jules1955]

No, still at 2 mg, although have been managing a few days at a time on 1.5 so maybe eventually that will be my new lowest best dose.

[jules1955 in reply to HeronNS]

And do you feel good ? No pain or fatigue ?

[HeronNS in reply to jules1955]

Yes. But I'm a lot older now and have much less energy than I had back in 2015. I think other factors haven't helped including social isolation because of the pandemic and the fact that I live in a multi unit building now and not a house - we moved in 2019 and were just getting really settled into a new routine when the pandemic changed everything. I find I need to be very disciplined with myself or I'd do nothing. In the four years we've been here I've dealt with a couple of knee injuries as well and that slowed me down for at least a year. Also I had a major PMR flare and that took some months to settle. I think my Shingrix vaccine helped actually. Did something to knock my immune system into better shape! I think generally speaking I'm better, PMRwise. But I've been here before, so not holding my breath!

[Merryfield in reply to HeronNS]

It may or may not be the time for you, but sounds like your knee pain is bad and adding to misery. I got to a point in 2021 where I could barely walk. In fact, without a cane one night, I thought I was going to have to crawl. Had one knee replaced in Nov, ‘21 and the other in June ‘22. What a relief to be able to walk with virtually no pain well by Fall of ‘22.

[HeronNS in reply to Merryfield]

I think you meant to reply to  jules1955 ? Changing my behaviour, physio, using a pedal exerciser, using special walking poles to offset weight as I walked, temporary use of a cheap elastic brace to support joint as I walked, and Flexiseq, turned my knee injuries around and I've never had to go back to the orthopod I saw near the end of 2020 with a view to possible knee replacement. Long may this recovery last! However I do believe my acute problems at the time were caused by injuries and not to the arthritis present in the joint. Although both doctor and physiotherapist said the pain and swelling were most likely caused by OA.

Another thing which helped, partly by giving me hope, was a book recommended to me by someone on HealthUnlocked: Treating Your Own Knees by Jim Johnson. Highly recommend.

[Merryfield in reply to HeronNS]

Glad to hear you have found knee relief.

[SheffieldJane]

I am feeling the same as you describe. I am at 4.5mgs. I feel utterly exhausted and very stiff and achy. I have been at this level before when my diagnosis was PMR only. I now have GCA/LVV. All I want to do is go to bed and sleep. I have never felt this awful, I am very irritable. I am awaiting the results of a morning cortisol test that my endocrinologist sent to me ( saliva test). I am loathe to increase my Pred dose. I feel as if I would have to increase a lot to feel any better. I have the symptoms of GERD/Diverticulitis/IBS that compound the misery ( no formal diagnosis).

[jules1955 in reply to SheffieldJane]

I commiserate with you S-Jane and like you I don’t want to up the dose again, but also don’t want to feel like this for goodness knows how long. It’s good to know others are in the same boat. Keep rowing ❤️❤️❤️

[Jackoh in reply to SheffieldJane]

All that sounds awful Jane. It’s a bit of a bitter pill to take that as you get lower it gets more difficult. But then you’ve come a long way, twice! X💐

[SheffieldJane]

Thank you. I feel like I’m bailing these days just to keep afloat. 💚

[123mossie]

I had similar adrenal symptoms as has been described, like wading through treacle. I found pausing the taper and sitting at the same dose for a few weeks allowed the adrenals more time to wake up. I then continued the taper, maybe repeated that once more on my way down to 0. Ok now, no pred & adrenals did eventually return to normal.

[Nextoneplease in reply to 123mossie]

Thank you mossie, it’s good to hear you are off pred 😊

I’m reading these posts having fallen deeply asleep on the sofa from 11pm to 1am, having also napped in bed for a similar duration this afternoon 😞 Will I sleep tonight in bed? Who knows? But I do know this fatigue is dreadful….the only real thing I’ve done today is go to an hour’s choir rehearsal, some of which was sitting down 🥹 And I’m still on 8mg…..Hang on in there everyone….xx

[Oboes22 in reply to Nextoneplease]

I too have to sit down during choir rehearsals and never like doing it but needs must. Keep smiling and keep singing. Pam

[Nextoneplease in reply to Oboes22]

Thank you Pam 😊 You keep smiling and singing too xx

[Poshdog]

I too have the dreadful fatigue. Taken pred for 6 years starting at 15 mgs down to 4mgs and stayed there for 2 years - so much going on and had to be able to cope. Now down to 3.5 (DSNS) for 2 months,no PMR symptoms just fatigue, lack of interest. How long does this last I wonder or is it the same as how long is a piece of string.Glad you posted and hope your piece of string is short. Good luck and keep going, will be thinking of you xx

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Adrenals stuttering -and definitely how long is a piece of string! And if you haven’t already have a look at this , it is linked above but have reattached - and maybe request a basal cortisol test from GP -

healthunlocked.com/pmrgcauk...

[Poshdog in reply to DorsetLady]

Thank you DL. Understand extremely informative article, had read it before but nothing like going through the symptoms to really understand! Can see tests helpful but what is answer if adrenals won't wake - more steroids? I am hopeful that at 3.5 some action has begun.... but is is that wretched piece of string! xx

[Poshdog in reply to DorsetLady]

Thank you DL. just tried to post but machine appears to digested it! Had hoped that achieving 3.5 was an indication in itself that adrenals were coming out of slumber. Article is excellent but if adrenals on strike (along with most of Britain) are more steroids the answer? Hope this wretched piece of string doesn't turn into a whole ball. Xx

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

I doubt very much they won’t work at all - but they do need nudging gently. Mine took about 9 month , SnazzyD about a year I think.

Get the tests -and take it from there, no point worrying until you know for sure.

[Poshdog in reply to DorsetLady]

🌟

[jules1955 in reply to Poshdog]

Thank you for your reply Poshdog, we just have to keep going and do our best. PMR is truly a horrible disease xx

[PMRpro Ambassador in reply to jules1955]

There are a lot worse - it doesn't kill and for most people goes away sooner or later.

[jules1955 in reply to PMRpro]

This is very true, but it does get us down sometimes ❤️

[Southmead]

like you I’ m transitioning slow from 4.5 to 4.0 Pred. I too have been on Pred for

8 years. On the low dose i experience good days and bad days, a good day is feeling normal, a bad day is foggy brain, fatigue and just not with it.

The good days give me hope that the reduction taper plan from this site is a good one. I’m sticking with it, when I get to 4.0 and below I will order the adrenals blood test. The last one at 5mm showed the adrenals were still asleep. I’m hanging in there, the advice others on here give you is priceless, do what feels right for you. Good luck..

[jules1955 in reply to Southmead]

Hi Southmead, thank you for your reply, everyone’s journey is different and as you say - do what feels right for you. May I ask you, when you say order the adrenals blood test, is this something you do yourself ?

[Southmead in reply to jules1955]

Hi Jules, I live in the US, I can email my rheumatologist to request the blood test for adrenal function. She is monitoring my Pred intake, I’m due another test when I get to 4mm or below. If you don’t need operations, the private healthcare is pretty good. You’re paying for it, so you can make requests. Just don’t get seriously ill. The you’re in trouble.

[jules1955 in reply to Southmead]

Keep well ! 😳❤️

[Singr]

I so get what you are saying. Hardly achieving anything, I too feel sorry for myself right now and I’m on 7mg. Determined to get as low as my body can take but at times you just feel like bleh 😭. I’m with you. Hope things get easier.

[jules1955 in reply to Singr]

Thank you for taking time to reply, sometimes it’s a good feeling to know you are not alone ❤️

[Suet3942]

Hi Jules. Hang on in there. I reduced from 4.5 slowly to 4mg. I had a tender scalp and pain. I just went with it and within a couple of weeks I was ok again. Now reducing slowly to 3.5 and touch wood I’ve been ok even though I’ve been stressed with workmen in the house and loads of clearing up. I’ve been lucky that I’ve not had the fatigue yet. Hoping that I’m done with pmr after 11 years. Good luck.

[jules1955 in reply to Suet3942]

Thank you for your reply, wow 11 years ! I hope you are near the end of your journey ❤️