Adrenals stuttering to life?

[bussell]

After a reasonably uneventful journey from 20mg pred in Jan 2021 (PMR diagnosed early Jan, triggered I think by the first Covid vaccination) to 7mg in April, I am now in the middle of reducing from 61/2 to 6.

I'm finding fatigue a problem - I sleep very heavily in the afternoon, and am ready for bed any time after 9. Also feeling cold most of the time, freezing hands and feet, wearing four layers etc, though maybe that is just our lovely English summer. And in my usual night time visit to the bathroom, and when I got up this morning, I found myself staggering round like a drunk, not dizzy, just v hard to balance. Stiff and achy when I get up, but that mostly wears off.

I'm hoping some of you experienced souls can tell me whether this is the sort of thing to be expected in the transitional period of the adrenal glands getting their act together again. How long might that last? And should I put the reduction to 6mg on hold for a while and stick on 6 1/2? My Australian family (son, DIL and three teenagers) arrive late June for 3 weeks - haven't seen them in 4 years! So I want to be in good form for a busy and exciting time.

[PMRpro Ambassador]

All of that could be due to poor adrenal function yes - but the early morning stiffness could also be a sign that you are on the cusp on the PMR being managed by the current dose of pred.

I I have to say I would not proceed further with the reduction until I felt somewhat better - especially with the excitement of your visitors in the near future.

But do please be careful when you get up at night - make sure you do all you can to avoid a fall. The repercussions of that can be life-changing.

[DorsetLady PMRGCAuk volunteer]

Have a look at this re adrenals -

healthunlocked.com/pmrgcauk...

It’s not a magic “switch on” - took mine about 8 months to really get going again.

Probably sensible to wait until visitors have gone before you think about reducing - more because you will be busy rather than adrenals…

Enjoy their company -but don’t get too carried away…

[SnazzyD]

It could well be an adrenal issue. I found it very hard going from 7-5mg because I needed my adrenal axis to work but it was still too dozy. The only way to get it to wake up is to keep having low cortisol but not too low that you get an adrenal crisis which can be from debilitating to life threatening. Do read the bit about adrenal glands in our FAQ’s because it is essential knowledge. Getting out of this no man’s land of dose level is what it takes to feel better, but and it’s a big but, you need to not go too fast. I was doing 0.5mg slowly added in over 6-8 weeks or so, but I did vary. Sometimes people find that if they pause a while they do feel better about reducing but I found it was worse for me. I had to accept that I would have to reign in my life in order to not keep challenging my body that was dealing with low cortisol. Another little concern is that you have some stiffness hovering about in the mornings. I don’t have PMR but read that some people have a bit of stiffness as normal, but beware of it slowly ramping up because your dose has become too low to deal with PMR inflammation. That would add to your low adrenal-like symptoms and sometimes it the two can be indistinguishable.

You might want to discuss with your doctor about increasing slightly in order to see if the stiffness goes and help you through what will be a challenging 3 weeks and then reassess the situation. There’s no easy answer here.

[bussell in reply to SnazzyD]

Thank you Snazzy, DL and PMRpro. All very helpful, and confirms what I was thinking. Yes, I have read all the posts on FAQs. Also v helpful.

I'll keep on at 6 1/2 until mid July, and then reassess. If this does not seem quite right, I'll have a chat with my GP. He is v understanding on the whole, but not really into the finer points of managing reducing. But in the end is agreeable to letting me do it myself and prescribes what I ask for. So on that score I count myself very lucky.

Have a good week, all of you. And if you are celebrating the Jubilee🥂🥂

[Exflex in reply to bussell]

Perhaps we should choose our GPs based on whether they have had PMR or not. Mine was all for getting me off pdq but I reminded him of the yo-yo, lower-slower and PMR’s model of the dripping tap. He relented and said 1/2 mg drops will take you longer but accepted the plan. I owe the insight enabling me to defend my corner to the knowledgeable members here.

[PMRpro Ambassador in reply to Exflex]

Not longer when it works first time!

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

a lot of them aren't in the right age bracket!...and as PMRpro says smaller steps don't take longer than too big a one, flaring and even more Pred...

Not rocket science, but some don't get it!

[HappyDiamonds]

You have described me exactly and Im on my second week of 6mg Pred. Only been stiff in the mornings for the last week or so although I am stiff due to Arthritis most of the time (I have GCA & arthritis not PMR so normally get up well and struggle later) and like you staggering to the loo. I fell asleep at my laptop while placing my Ocado order at 11am and when my home help asked if I would like to change to my summer duvet quickly replied not until at least July 😀. Strange things going on as today I could fly

[PMRpro Ambassador in reply to HappyDiamonds]

Looks more like you need both duvets!!!!

[Dewdrop456 in reply to PMRpro]

I have been off sick for a few weeks with Shingles. It's the second time that I've had it and it is truly AWFUL. I too have been having regular periods of feeling too hot and then really cold. Do you think this is associated with my Prednisone dose of 1mg ?Thank you

[PMRpro Ambassador in reply to Dewdrop456]

Impossible to say since you have been unwell with shingles too - but I used to find PMR completely wrecked my body thermostat and I was either too hot or too cold! I went through a few years where I was mainly far too warm and wearing summer clothes in the house in winter. Then I had a couple of winters where I noticed it was cold and needed socks again - no idea why though.

[Dewdrop456 in reply to PMRpro]

Yes thank you for your reply PMRpro. The Shingles completely drained me but I am hoping to return to work on Monday. I am normally quite cold but these temperature swings are rapid and fierce. Anyway hopefully they will stop soon. I hope that you are pain free and all is well with you.

[bussell in reply to HappyDiamonds]

In this club we are never alone! And, oh yes, falling asleep mid morning over the laptop. Do that too. Even more so over Wordle! Sometimes I think keeping a sense of humour is top priority of the day. Along with putting an extra rug on top of the summer duvet!

[PMRpro Ambassador in reply to bussell]

Now falling asleep over Wordle doesn't surprise me ...

[bussell in reply to PMRpro]

😂😂

[Thelmarina in reply to PMRpro]

🤣

[piglette]

You sound very like I do. The cold is most odd, I will be surrounded by heat but still have shivers down my back. Fatigue is just unbelievable. You need to hang around on your current dose as I found the fatigue just gets worse if you reduce.

[Seacat30]

About 2 weeks into 6mg I have started feeling tired in the middle of the day which never happened before. I am cold at night but it is colder at the moment and I possibly changed the duvet prematurely.

[Karenjaninaz]

I started wearing socks to bed last year. It helps. I wonder if cold is an added stress to our PMR bodies.

[Pr0jection]

Good idea to remain on your current dose until after your visitors have gone, and you've done all the usual chores that you do after they've left. At the beginning of my diagnosis (August 2020) I was all set to reduce as quickly as I could but have now realised that on 7.5mg I have a decent quality of life and will reduce as and when I feel my body tells me it's the right time. Enjoy your time with the family x

[PMArrrrgh]

So interesting to read bussell's adrenal function in this sub 7mg Pred dose region.I'm a formally fit 56 yo Male, PMR hit me big time in May 2020. Didn't get diagnosis and treatment until October 2020. Finally got onto Pred Jan 2021 and have slow tapered after Consultant guided taper of 2.5mg every 3 weeks resulted in a mahoosive painful flare in May 2021. After discovering this forum and reading lots I went back to the Consultant and got agreement that I could self manage my own taper. This worked out really well averaging a 0.5mg reduction every 4 to 6 weeks but ONLY when pain free and confident.

Currently on 5.5mg of Pred and experiencing the same symptoms as Bussell here excepting the cold.

I've stalled for over 7 weeks at 5.5mg as I really felt the effects this last 0.5mg step down from 6mg.

Once I've stabilised and feel confident I'll try dropping to 5mg after reading the advice given to Bussell here. It's the fatigue that knocks me out, a 56 yo who needs afternoon naps! (...though I do feel good when I've had one).

Ta, fellow PMR forumerers

🙂

[DorsetLady PMRGCAuk volunteer in reply to PMArrrrgh]

Maybe try one of the slower tapering plans as well -just one example here -helps the adrenals awaken as well as the PMR -

healthunlocked.com/pmrgcauk...

..but as you’re only 2years into treatment wouldn’t be in any rush — stay where you are for a while longer yet -a few months rather than weeks will do no harm -and give adrenals chance to catch up. One renowned Rheumy does that with some of his patients.

[bussell in reply to DorsetLady]

Thank you . This is very helpful Definitely going to plateau here for a while.

[Temoral in reply to DorsetLady]

Oh the perpetual joy of tapering! These plans are a fantastic help DL...and giving 'permission' to just sit tight for an extra week is reassuring. I would never have known this was a common experience without this forum. Thank you again. Currently hovering btwn 8.5 and 9...and pacing myself, even though I have to keep giving myself a good talking to on that subject!! Good luck everyone.

[PMArrrrgh in reply to DorsetLady]

Thanks for the plans and advice Mrs Dorset. Yes, I'm not planning on dropping the 0.5mg to 5mg quite yet and when I do I'll 'feather' the dose as you do in your tapers, I've had to do that occasionally around the 9 to 7mg range, below 7mg I've coped better because I know and plan around the withdrawal symptoms but also know I'm making progress. My weight is becoming a personal issue, I've put on 2 1/2 stones in about 18 months as I've not been burning it off cycling like I used too. I stopped Yoga too because my knees hips and shoulders/neck were too painful and restricted in movement to enjoy the stretches. Right now though I'm getting the urge to get out and do little rides again, I know I won't be doing my old twice weekly 40+ mile daily commute route up to London again for a while though!

Ta again.

Onwards team

👍

[DorsetLady PMRGCAuk volunteer in reply to PMArrrrgh]

Little and as often as you can-and are able to!

[SheffieldJane]

I have exactly your symptoms, including the poor balance when getting up for the loo in the early hours. I also feel the cold quite acutely, having been too hot up to now. I am also at 6 mgs and experience stiff and painful days, particularly when the weather is damp. I feel under pressure to reduce Pred as long term side effects are making their presence felt ( hypertension, high blood sugar, high cholesterol , thin skin, water retention etc. also the Endocrinologist is keen for me to get to 5 mgs so that he can begin an adrenal recovery plan. The fatigue pretty much rules my life. I have stopped Tocilizumab in recent weeks due to severe lower abdominal pain, stemming from the diverticula ( I believe). To achieve the reduction I will need a steroid sparer. In recent days I have been experiencing a nasty cold virus and as advised by my endocrinologist, observed the sick day rules. It was interesting to note that the extra 5 mgs made everything feel instantly better.I wouldn’t risk feeling so awful reuniting with my Australian family ( I go in late September). I wouldn’t reduce further and will be asking my Rheumatologist for advice on how to manage the trip. My grandchildren aged 13, 9, 8 and 5 would be devastated if I cancelled.

Wishing a good solution for you and complete empathy for how you are. Half my family came last Christmas and the joy saw me through and pacing. Wishing you the same.🌈

[perceptual63 in reply to SheffieldJane]

Hi SheffieldJane,

I read your post where you mentioned you had abdominal issues while taking Tocilizumab and also mentioned a steroid sparer for you to be able to reduce your prednisone.

For me, I'm dealing with serious abdominal issues while taking the steroid Medrol.

I am greatly interested to hear the path you might be taking concerning a steroid sparer that might not affect your GI system to help you lower your prednisone dosage.

Thanks.

[SheffieldJane in reply to perceptual63]

I will pass on anything that might be useful. I appreciate that you are in an extremely difficult situation.

[perceptual63 in reply to SheffieldJane]

Thank you. 🙂

[Carver63]

Hello, well i can relate to your symptoms and now off all meds for 1 month am still having fatigue and strength issues in my day. those symptom seem to last for a while. Over all i believe the worst is over and i am hoping that they will lesson as my body (adrenal) energy picks up again. Rest seems to be the answer for me (Morning noon and Night just about)

[LCfan]

A few of you mentioned summer duvets. I feel the cold and use a 15 tog duvet nearly all year round (unless there is an occaional heatwave!) My feet particularly are always cold so I sometimes go to bed in 2 pairs of socks and a hot water bottle to stave off cramp.

🥶