Is it a flare or something to do with adrenal insufficiency?

[lkcreedon]

So I was diagnosed with PMR 4.5 years ago. Up and down the steroids a bit having started on 15 mgs Pred. At the start of this year I was on 10mg again! Found it very hard to taper. Put on methotrexate in Feb and still not able to reduce so end ofay I in agreement with the rheumatologist I stopped the methotrexate and carried on with the DSNS 7 week tapering plan. It was working really well for me and I was taking my time in-between drops of doses. I world have said that the PMR had gone very quiet and I was happy with the taper. Yesterday and today I'm quite bad. Aches all over. My legs and behind my arthritic knees are quite bad. Am having to slow down and cancel exetcose classes ( not strenuous) and meeting up with people. I. am poorly.I have OA in my two knees ( Bakers Cyst behind left knee), left hand (recently infected corticosteroid) right thumb and right foot. Wondering if it's a flare now that the weather has gone cold and if the adrenal glands are not working yet. I'm currently on week 5 of the 7 week tapering plan ( 5 days new dose and 2 days new dose).After all of that do those knowledgeable and experienced people think I should up dosage by 5mg for 5/7 days and go back to 8mg where I was quite comfortable? The aches are so debilitating today. Will improve as the day goes on but will still have quite stiff knees. Sorry for this long post and I hope I phrased it properly.

Thanks for taking time to read it. I can see you are busy. All the best 🙏

[DorsetLady PMRGCAuk volunteer]

As you are nearing the end of this current taper would say it's probably a flare - so yes treat it as such... 7 days at least at increased dose.. but you can stay there for 14 days without impacting drop back down.. to 8mg.

You are also correct in thinking adrenals as well.. so maybe stick at 8mg for a month or so to give them a change to catch up... and if not already doing would suggest only 0.5mg reduction at a time.. and any tapering plan can be increased in time by repeating each stage/week ..

Really no rush, you have other health issues as well which make tapering more difficult, and some enlightened rheumies suggest no tapering during coldest part of year.

[lkcreedon in reply to DorsetLady]

Thanks Dorset Lady for your advice. I will do just that now this morning. Bit down with it all. You think it's going well then it's not 😔. I will increase by 5mg and take it very slowly. You are great 🤗

[DorsetLady PMRGCAuk volunteer in reply to lkcreedon]

Unfortunately that's life with PMR all over.. and if your adrenals are also struggling that makes you feel fed up ... 🌸

[lkcreedon in reply to DorsetLady]

Thanks DL. I'm usually ok about it really but I guess anyone can have an off day too 🥴

[softekcom in reply to DorsetLady]

What a timely post. And thank you for your reply.

Since Sunday, I have been a state. Cannot lift my arms - not to fold my duvet, towel my hair, or take a cup out of a cupboard. Aching neck, shoulders, hands and feet. I could not lift my head up from the book I was reading. The exhaustion is mind numbing. For some reason I cannot seem to go below 4 mg. GP suggested going back to 5 mg, which I did yesterday and I am much better today. I too thought it was the cold rainy weather.

[PMRpro Ambassador in reply to softekcom]

"For some reason I cannot seem to go below 4 mg."

The reason is because the pred cured nothing, it is a management strategy which combats the inflammation created by an underlying autoimmune disorder which causes the symptoms and which continues in the background, totally unaffected by the pred. The high starting dose clears out accumulated inflammation and then you taper the dose to find the lowest effective dose, the lowest dose that works as well to manage the symptoms as the starting dose did, the dose that is enough to combat each day's new batch of inflammatory substances which are shed in the body each morning at about 4-4.30am. If the dose you take is too low to do that completely, then inflammation builds up again and you get symptoms.

When your body repeatedly protests at about the same dose it is telling you that you have reached your destination - the lowest effective dose is the last dose that worked well.

[PMRpro Ambassador]

Just to say I agree with everything DL has said. I'm all stiff and fed up this morning - as the latest lot of rain has arrived in the Alps, the other end of a big swathe of a rain front stretching from west of Ireland to here!!! It has been uncanny how your weather and ours has duplicated this year, it doesn't usually. I find I'm worse in the couple of days before the rain arrives. Whatever some doctors think - weather does make a big difference.

No apologies needed - that isn't a very long post!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

As you’re fed up I’ll send you one of these as well - 🌸.. 😊

Daughter is busy sorting out our NZ itinerary -so getting quite excited…

[lkcreedon in reply to DorsetLady]

Going to NZ how exciting for you. Expect you will have nice weather there. North or South Island? When are you going?

[DorsetLady PMRGCAuk volunteer in reply to lkcreedon]

Daughter lives on South Island - so mostly around that this time.. Did a couple of trips to North Island last time.. Dec-Feb

[PMRpro Ambassador in reply to DorsetLady]

And then throws in her holiday plans as well!!!!! When do you go?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Second week of Dec through to first week Feb.. better read my post on subject! 🤣😂

[lkcreedon in reply to PMRpro]

Tnx PMRpro. Yes very uncanny really. My friend is just back from some region down the west coast of Italy and they had a few days of poor weather. Well my Rhumie dies make a difference as well. Mind yourself 🤗

[PMRpro Ambassador in reply to lkcreedon]

A few DAYS of poor weather - I'd take that!! This year we have had one or two days of nice -ish weather at a time - then 4 or 5 of rain and no sun. We just don't DO no sun ...

[lkcreedon in reply to PMRpro]

It's been bad in so many places this year.

[PMRpro Ambassador in reply to lkcreedon]

I saw the Sky News world weather map the other day - the only non-rainy places were northern Africa and Russia!!!

[lkcreedon in reply to PMRpro]

We probably had the worst summer ever. So dull and lots of rain too. We had one beautiful week /10 days early in Sept. It made such a difference. Good for the body and mental health too!

[PMRpro Ambassador in reply to lkcreedon]

They informed me it was the coolest since 2015 in the UK - you can't have been much different.

[lkcreedon in reply to PMRpro]

No that sounds just about right. Holidaying up the West Coast in Connemara and always a cold breeze. Normally I like to go into the sea but it was just too cold for me this year. Wind chill. Guess we just have to put up with it. There is no choice 🥴

[PMRpro Ambassador in reply to lkcreedon]

Well I do - normally living here in the Dolomites is long periods of high pressure with lots of sun. Not this year!!!

[ChrisBeeLoop]

Oh you poor thing! Great advice as usual from Dorset Lady and PMRpro. I am also wondering whether my niggles are a flare or sleeping adrenal glands. I had a blood test yesterday and waiting for results to see if CRP is up again. If not, I will blame it on the adrenals and try to creep down further. My husband suggested watching horror movies to get the adrenaline going.

[DorsetLady PMRGCAuk volunteer in reply to ChrisBeeLoop]

I think I might be telling your husband to keep his suggestions to himself…😳.. thank you very much, not sure that’s medically proven.. 😂🤣

[Thelmarina in reply to DorsetLady]

Like gin helping the baby along 😂

[DorsetLady PMRGCAuk volunteer in reply to Thelmarina]

Well that's preferable to a horror movie any day!

One day I'll tell you what hurried my daughter along... 50 odd years ago..

[Thelmarina in reply to DorsetLady]

😂

[Stills in reply to DorsetLady]

I’m all ears?

[DorsetLady PMRGCAuk volunteer in reply to Stills]

have sent Chat...

[tangocharlie in reply to DorsetLady]

I've always wondered if stimulating a fight or flight response in us when the adrenals CAN'T respond actually damages us, maybe brings on a flare? I'd imagine our bodies/brains receive the impetus to panic but then the body can't respond and pump out cortisol and adrenaline. I wonder if this has ever been researched? Is it the same as brings on an adrenal crisis like a trauma? I'm just guessing, I have no medical background

[PMRpro Ambassador in reply to tangocharlie]

It's what can trigger an adrenal crisis, or at least make you feel pretty ropey

[tangocharlie in reply to PMRpro]

That's what I thought, but it's yet another thing the doctors don't tell us, Another thing to worry about 😀 All the more important for us to keep calm and avoid stress

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

If only life were that simple... 😼

[PMRpro Ambassador in reply to ChrisBeeLoop]

That might cause more problems than not - it isn't a lack of adrenaline, it is a lack of cortisol to help the body cope with the excitement, good, bad, emotional or physical!!!!!!

[lkcreedon in reply to ChrisBeeLoop]

Thanks ChrisBeeLoop, waiting to have blood tests too. I'll keep that in mind about the CRP results being low and the adrenals not yet functioning properly. Not sure I will start watching horror movies however 🤓🤓

[Doraflora]

don’t despair Ikcreedon. Your story is similar to mine: diagnosed (over the phone) 4.5 years ago and tried tapering down 2/3 times.

However, this time I’ve now been on 2.5 mg for at least 2 months & now it’s colder I don’t feel inclined to drop just yet. Especially as I’ve so much on atm plus we’re preparing for our trip to Singapore & Australia in December.

I would add that the cold/damp definitely has an impact on us. I know that for certain as my husband suffers with pain from a chronic degenerative spine condition and the cold & damp makes SUCH a difference to him! But hey, we have glorious sunshine today & it’s much warmer here on the north east coast of Lincolnshire.

Tomorrow is a new day but I’m sending you a virtual hug for better days.

[PMRpro Ambassador in reply to Doraflora]

Sunshine in Cleethorpes???? More than I can say in Italy!!!!!

[Doraflora in reply to PMRpro]

Even cleethorpes looks “lovely” in the sunshine 😀

there’s definitely a lot worse places in the UK.

[PMRpro Ambassador in reply to Doraflora]

My husband was born and brought up there - I'm allowed to laugh at it!!

[Doraflora in reply to PMRpro]

Oh yes! I remember you saying now.

We do have cheaper house prices here though & you can’t beat “Meggies” for fish & chips🤣

[PMRpro Ambassador in reply to Doraflora]

They'd have to be pretty good to beat Whitby - a daughter lives there! And I love Scottish haddock. Not a cod lover ...

[lkcreedon in reply to PMRpro]

Dislike cod myself

[Doraflora in reply to PMRpro]

Oo now there’s a challenge PMRpro for you to revisit cleethorpes and compare 🤣

It’s years since we went to Whitby but the Ocean Fish Bar Cleethorpes is top dog.

PS: it’s mostly haddock here anyway as opposed to a lot of cod.

[PMRpro Ambassador in reply to Doraflora]

Do you actually live in Cleethorpes?

[Doraflora in reply to PMRpro]

No, we live in a semi rural suburb of Grimsby now, the neighbouring town to cleethorpes.

We bought our very first house in married life in cleethorpes in 1972. A mid terrace & we wondered at the time how we could afford to buy it at £2,950!

[PMRpro Ambassador in reply to Doraflora]

Oh yes - familiar with Grimsby too. OH's father, who I never knew, was a fish merchant and so was his stepfather.

[Doraflora in reply to PMRpro]

Sadly, Grimsby Docks just ain’t the same as years ago, although some very well established family firms are still thriving.

[Stills in reply to PMRpro]

Whitby is super, we visit every year but can’t manage the steps up that hill any more but the fish and chips make up for missing the view

[PMRpro Ambassador in reply to Stills]

Taxi to the abbey and walk down??? It really isn't what you could call an "accessible" town is it!!!

[lkcreedon in reply to Doraflora]

Thanks so much Doraflora. Always damp in Ireland and cold as well. We do get an occasional sunny and warm day 😏 too. Since I upped my pred by 5mg yesterday, I've improved TG . Love to be down at 2mg. It's such a struggle and I would consider myself grateful not to be as poorly as many people on this site. Just gotta keep ploughing away ☺️. That upcoming trip sounds just great. Enjoy that 🤗

[Doraflora in reply to lkcreedon]

Aw, you’ll soon get lower, Illcreedon. I’m afraid it is a case of patience.

4.5 years ago I never dreamt I would still be on Pred. How naive I was🤣

[lkcreedon in reply to Doraflora]

That's the dream to get lower! And patience was never a virtue of mine but I'm learning 🥰

[PMRpro Ambassador in reply to lkcreedon]

If you don't learn anything else with PMR, it will be patience!

[tangocharlie in reply to Doraflora]

You might not, 5 might be the optimum dose, either for now or for longer. All you can do is try, go very very slowly and watch out for any problems eg a flare up, return of symptoms or adrenal problems.

[lkcreedon in reply to tangocharlie]

True Tangocharlie slow and easy is right. As you say all I can do is try. From what I have read on this site I think I have learned quite a lot and what to watch out for. To be honest it's all quite interesting but I'd like it to go away now 😀

[BeachsideVia]

this may not help you but I have these sermingly random flares. I am not on pred. I take HCQ. My flares are less frequent but I still get them. Last two weeks I flared after my diverticulitis acted up. I ran a low grade fever. I adjusted my diet and waited it out. The diverticulitis resolved, but the flare followed, clavicle, back, hip. I am truely wondering if a bacterial infection has something to do with flares. You said you had an infection. If anyone has info on this, please share.

I cancelled everything and rested for 2 weeks.

[PMRpro Ambassador in reply to BeachsideVia]

Anything that interferes with the immune system status can trigger a flare - so that includes infections of any sort. Some people don't notice it, some find that if the immune system is taking care of other business, their PMR/GCA symptoms improve dramatically. Everyone is different!

[tangocharlie in reply to PMRpro]

I find that, if my immune system is given something to do like fight an infection I actually seem to feel better. Very odd

[lkcreedon in reply to BeachsideVia]

You have PMR? How did u avoid Pred?

[tangocharlie in reply to BeachsideVia]

I'm on HCQ too but take Pred as well. DId you get to a stage where you could stop the Pred? Has your PMR gone? Ooh you're giving me hope