Is this a flair or adrenal insufficiency?

[Loyd]

Hello all you knowledgeable people.

I would so appreciate some advice. I have been feeling very pleased with myself as managed to taper down to 2mg pred. However for the last week or so have been feeling very fatigued, weak and dizzy. BP also low (110/60 ish). No significant muscle pain.

Should I try going up to 5mg for a week to see if that makes a difference and if it does try going back to 2mg or stay at 2mg and hope things improve? We are Italy until Oct so can’t consult my doctor. Hate the thought of failing again- diagnosed PMP 2019. 73 year old woman.

Really appreciate any advice or thoughts.

[piglette]

It sounds like the deadly fatigue caused by adrenals. I must admit in my case it was so bad I did go up 1mg, as I was becoming a zombie. Even when you have stopped taking pred the adrenals will still take a while to get back to normal. By increasing, all you are doing is putting off the evil day as far as the adrenals are concerned. Going up to 5mg should make a difference if it is the PMR or the adrenals.

[Loyd in reply to piglette]

Many thanks Piglette. Maybe just 1mg extra for a couple of weeks and try again?

[piglette in reply to Loyd]

Good idea. I actually went from 5mg to 6mg and it did make a world of difference, although I did try to stay at 5mg for quite a while.

[Loyd in reply to piglette]

I know!! It’s just frustrating to have to back track but feeling better has the be worth it. 🤞🤞🤞

[piglette in reply to Loyd]

The trouble is I knew I would hit the same problem with the adrenals when I tried to reduce again. I suppose I was coming up for air!

[DorsetLady PMRGCAuk volunteer]

Just to clarify- have you recently reduced to 2mg - and from what dose, and using a slow taper or not? Done anything that may be accounting for a flare?

As piglette has said it does sounds very much like adrenals stuttering.. but bit of context might help.

If it is purely adrenals that just a small increase might be enough to settle things down - say up to 3mg. However, if it’s combined with a flare you may need more,- and then back to 3mg… as 2mg obviously isn’t quite enough at present.

But as many know if it is adrenals, it just a matter of getting through the difficult times - and hoping they do get the message sooner rather than later.

[Loyd in reply to DorsetLady]

Many thanks Dorset Lady that is a bit reassuring. Very slow taper using your method. 4 months to get from 3mg to now 2mg.

[PMRpro Ambassador]

What dose were you at before? Were you OK there?

If it worsens then it could be a flare though then you would expect PMR symptoms and what you describe are more adrenal insufficiency symptoms.

Where in Italy are you? We have doctors here too you know!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good ones too. And many speaking English 😊

gov.uk/government/publicati...

[PMRpro Ambassador in reply to DorsetLady]

I see we don't appear on the list!!!

[Loyd in reply to DorsetLady]

If things don’t improve I’ll do the doctor thing. Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

From what you’ve said, I’d plump for adrenals… and not sure doctors will be able to do a lot.. but always worth a try.

Disappointing though it may be- you might need to go back to 3mg for time being..

[Loyd in reply to DorsetLady]

I think I will take your advice and go up to 3mg tomorrow and start the slow taper again. Better than feeling like this. Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Maybe sit at 3mg for a couple of months and give the adrenals a chance to catch up.,,

Hope you soon feel better ..

[Loyd in reply to DorsetLady]

Just what I’ll do! Thank you most helpful.

[PMRpro Ambassador in reply to Loyd]

That's what I'd do - and the current weather with the heat. humidity, and Sahara dust is pretty stressful anyway. You might as well ENJOY being here!

[Loyd in reply to PMRpro]

I have been very slowly reducing since February from 3mg to just last week to 2mg - alternating a quarter mg over quite a few weeks. We have a house near Castigleone del Lago on the Umbria Tuscany border. We are having problems getting our ‘carta di sanitoria’ so not registered with a doctor yet.

[PMRpro Ambassador in reply to Loyd]

Oh how lovely - I hope to wander down to Passignano in the autumn once it is a bit cooler! I remember a superb deli in the middle of Castigleone the last time we were down there - years ago though.

That was pretty slow but adrenals can take a VERY long time to wake up. If you go back, it slows that side down. But if it is a flare I think you will notice getting worse whereas with adrenals it will stay much the same or improve.

[Loyd in reply to PMRpro]

I do think it feels more like adrenals than all my previous flairs.

We do love it here between Castigleone and Passignano. Where are you? How long have you lived here?

[PMRpro Ambassador in reply to Loyd]

I live in Val Pusteria, almost on the Austrian border, the German speaking region. We bought the appartment 22 years ago from plan. got the keys 20 years ago last Christmas and moved here full time after my husband retired early from the NHS about 15 years ago. The more disciplined way of the Germanic way of life mixed with the good things of Italy - what's not to love! The weather is rather more temperate but July/August can be almost as hot as further south so this year I'm escaping to the UK and will be back in early September.

[Loyd in reply to PMRpro]

Sounds lovely! Your Italian must be fluent.

[Loyd in reply to Loyd]

Oh just reread - you must be fluent in German!!

[PMRpro Ambassador in reply to Loyd]

Exactly - I manage some things in basic Italian but my German is fluent if you ignore some of the grammar - though probably better than many of my neighbours who speak something more akin the Schweizerdeutsch than Hochdeutsch! Though i learned my German in Bavaria so it's a bit variable! When I moved here, 95% of the valley identified as German-speaking. Few more Italian speakers now, mainly migrants.

[Loyd in reply to PMRpro]

Interesting life you’ve led! My Italian is poor - can read and write better than I speak,

Re the awful dust from the Sahara - we’ve been suffering too but torrential rain today will cure it I hope.

[PMRpro Ambassador in reply to Loyd]

It washed it down here a couple of days ago and was back the next, Still a bit hazy but not dust I don't think!

[Italybound62 in reply to PMRpro]

I am US born and reside here now but lived in Germany for many years as a child (German immigrant parents). Planning to travel in September to Switzerland and northern Italy and can use my German again. 😀. Worried about getting my current flare under control by then 🥹

[Loyd in reply to Italybound62]

Best of luck!

[PMRpro Ambassador in reply to Italybound62]

Let me know if you come this way - the other end of Suedtirol from Switzerland!

[Louisa1840]

Hello Loyd, I think that, especially as you are on holiday, your QoL is paramount. If I were you I would bump up a few mgs to see if you feel better simply so you can enjoy being in lovely Italy! You can sort out whether it is a flare or adrenal insufficiency after you get home and deal accordingly. Wishing you every blessing.

[Loyd in reply to Louisa1840]

Thanks for that Louisa - I’ve decided to go up a bit and hope that makes a difference. 🤞🤞🤞

[Louisa1840 in reply to Loyd]

Crossing fingers AND toes for you Loyd!

[Kaaswinkel72]

hi there,

From another point of view: warm in Italy/ sweating/ bloodpressure goes down…start drinking a lot and see if the hydration pumps up yr bloodpressure. That might also help for you to feel better. It might also help the dizziness, so less chance to fall over the notoriously uneaven pavement in Italy.

Give it some consideration.

[PMRpro Ambassador in reply to Kaaswinkel72]

You're right - on Sky they are just discussing the concept of "heatwave" in various countries as the UK is about to have a few days of summer weather. People who don't live in it tend to forget that. And Loyd is from Scotland - not often persistently over 30C up there!

[Loyd in reply to PMRpro]

Definitely rarely above 20 in Scotland!! We’ve had 36 here this last week - divine actually!

[PMRpro Ambassador in reply to Loyd]

Oh no - 36C is too much! Except to sit in the shade and do nothing. Have you moved here? How can you stay so long if not? Not being nosey nosey - but I'm trying to work out how long I can stay here for medical care while moving partly to a granny flat in Fife!!!

[Louisa1840 in reply to PMRpro]

Not sure you'd do too much sitting in the shade in Scotland, Pro! These decisions are hard to make aren't they? I think it's a matter of trusting your gut, lining up your flags and not rushing into anything too quickly but hey, I was ever impulsive!!! Im guessing you're thinking summer in Fife and the rest of the year back in Italy?

[PMRpro Ambassador in reply to Louisa1840]

Sort of. Maybe a bit more to and fro. But I know I can't stay here alone forever, not fair on the family.

[Louisa1840 in reply to PMRpro]

Family are such an anchor aren't they and become more so the older we get. Aren't we lucky to have them..........

[Loyd in reply to PMRpro]

We lived here (further south in Umbria (Todi) for about 10 years and got our residency. Returned to Perthshire for a few years but missed it so much we bought this little Villa (with an olive grove) by the lake and just love it!

The medical care is a worry though! George got some chest pain a couple of months ago and the A&E were amazing! Seen immediately - had every test possible (all well) and still no bill to pay! However getting the health card is proving so difficult because of Brexit regulations so not sure what we’ll do. Just keep our fingers crossed we stay well. 😬

[Loyd in reply to Loyd]

I should say we go back to Scotland in Oct and return here in March so will get any tests etc through the winter months on the NHS.

[Loyd in reply to Kaaswinkel72]

Definitely worth doing! I’ll start that today! Does wine count!!! 🤪

[Loyd in reply to Kaaswinkel72]

I replied to you excellent suggestion but clicked on PMRpro by accident!

[Kaaswinkel72]

the honest factual answer is: wine and other booze DEHYDRATES, meaning gets rid of fluid, so can lower your bloodpressure…especially when it is warm and the bloodvessels go open anyway…

But well, it can lifts your own Spirit of course!

So if you decides on wines, and italian strong coffee, you can always drink a lot more water to compensate. Being aware and making choices, that s what it is all about!

Enjoy!

[Loyd in reply to Kaaswinkel72]

I was being a bit tongue in check!! But I do enjoy our Italian wines €1.45 a bottle helps to!! 😀😀

[Almostaweed in reply to Loyd]

I wonder if resting is a good way of beating adrenal fatigue. ie going with the exhaustion and allowing reserves of energy to build up. Also eating less and more carefully - salads and such. I have just tried it for a few days and came out the other side relatively normal.

[Loyd in reply to Almostaweed]

Many thanks that is good advice! Stop feeling guilty for doing very little. 👍

[DorsetLady PMRGCAuk volunteer in reply to Almostaweed]

I wonder if resting is a good way of beating adrenal fatigue. ie going with the exhaustion and allowing reserves of energy to build up.

Exactly... it's the advice we give on almost a daily basis 😊

[Loyd in reply to DorsetLady]

Brilliant! Just what I’m going to do - lots of afternoon snoozlebyes!!

[DorsetLady PMRGCAuk volunteer in reply to Loyd]

Sounds like a plan 😊

[Almostaweed in reply to DorsetLady]

You have made my day! Thank you. I have got so many things wrong lately, I am thrilled to have got something right.

[DorsetLady PMRGCAuk volunteer in reply to Almostaweed]

😊

[Plains]

my Rhummy told me if you are on steroids for a long time you can experience withdrawal symptoms. Maybe have your cortisol levels checked will let you know how your adrenals are doing?

[Loyd in reply to Plains]

Will get them checked when we get back - good idea. X

[Kiwisufferer2019 in reply to Plains]

Hi Plains, I've been on prednisone 4.8 years, and have discovered through the invaluable information shared from the knowledgeable ladies on this forum, that what I originally thought were flares, the last few months were in fact withdrawal symptoms. I experimented last time I tapered(slow taper, .5mg over 6 weeks, when the neck pain and thigh pain started I took tramadol, and after about 1 hour of going yo bed, the pain disappeared. I knew that wouldn't be the case if it was a pmr flare. I was so excited to think I would be able to keep tapering down albiet ever so slowly, at last. The withdrawal symptoms are so similar to the flare symptoms. I am just in the first week of taper from 8mg to 7.5mg. I hope this may help you a little. It does make me wonder how many people may think they're having a flare when it actually could be withdrawal symptoms. I wish I'd known 2 years ago. My blood markers have been normal for over 2 years, and I could never understand why I was having supposed flares. All that time wasted. My Rheumy never mention that withdrawal symptoms were almost identical to flare symptoms. It does make one wonder, how much they actually know!! Janis

[Loyd in reply to Kiwisufferer2019]

Very interesting. I will keep that in mind although I have had no pain just fatigue, dizzyness and weakness. Glad it’s going well with you.

[PMRpro Ambassador in reply to Kiwisufferer2019]

Have you ever asked here? It is something we talk about a fair bit - and why we push the slow taper which helps by letting your body get used to the new dose more slowly. Going from every day one dose to every day a new lower dose overnight so to speak is harsh, and the symptoms are often very similar to those of the disorder you are using pred to control. A flare steadily worsens over a couple of weeks and ordinary pain relief doesn't help at all, withdrawal improves and does respond to most painkillers.

[Plains in reply to Kiwisufferer2019]

Thank you and I was thinking the same thing. My blood tests were excellent. My problem was the pain in my head due to GCA. I was concerned it was a flair. My Rhumy said to try and ride it out a bit and to call him to see if I can get a PET scan while experiencing the head pain. My PMR seems fine. I should mention that I am also on Actemera infusions once a month. Thank you again!

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Your blood tests will be excellent on Actemra -unfortunately many rheumatologists don’t realise that., haven't read the paperwork!

This from study on TCZ/Actemra and RA patients -]

Due to the blockade of IL‐6 signalling, tocilizumab inhibits the hepatic production of C‐reactive protein (CRP) and other acute phase proteins like the erythrocyte sedimentation rate (ESR). Thus, CRP and ESR levels rapidly decrease after the initiation of tocilizumab treatment, even before any improvement in swollen or tender joint counts is observed.. This discrepancy has led to concern on disease activity evaluation in tocilizumab‐treated RA patients.

++ substitute references to RA- insert GCA

..as for “riding it out” -not sure they’d be so blasé if they thought their sight was risk!

If you have headaches you require a higher dose of Pred..

[Plains in reply to DorsetLady]

I agree. I have wanted a et scan for a long time. I just may tell him I have temple pain to get him to do it. Do you think it would show inflammation even thou I am on the two drugs?

[DorsetLady PMRGCAuk volunteer in reply to Plains]

I really don’t know- it may show some traces -but there is obviously something there or you wouldn’t have headaches. If

[PMRpro Ambassador in reply to Plains]

You CANNOT use CRP or ESR as an assessment of the disease process when you are on Actemra. I think a second opinion might be a good idea. GCA can flare despite Actemra. As I say - I'm beginning to think that doctors should have to pass a test before being allowed to use it since so many obviously haven't read the documentation.

If your GCA is flaring due to the other mechanisms for inflammation which ARE NOT managed by Actemra. then it is possible that your sight could be at risk. Ask if they are ready for the law suit if that were to happen ...

[Plains in reply to PMRpro]

Okay I totally got it now. Thank you!!

[Kiwisufferer2019 in reply to Plains]

Your situation is completely different to mine, I don't have GCA and from what I understand I wouldn't be riding it out! The risk is too great. I did have a CT pet scan last year as I was getting headaches all the time, but all was good, so back to the slow taper and migraine meds. Since then I've had more success with my taper without the worry of GCA. Good luck and stick out for your scan, sooner rather than later. At least my Rheumy put my pred up to a high dose while I was waiting for my scan as a precaution.

[PMRpro Ambassador in reply to Plains]

You don't actually have to be on pred for long to get what WE call withdrawal effects. It can happen after just a few months or even less. If the change in dose is larger than your body likes, you will feel it. If you make the steps you try to reduce by smaller, it helps a lot. Or use one of our slowed tapers if you try a bigger reduction so that your body gets used to the new lower dose in stages.

[Plains in reply to PMRpro]

Agree. I absolutely do small tapers to avoid any problems. So far so good.

[Feeder]

Hello, Hope youre having a fantastic time. I am a Registered General Nurse and have been on Pred for 5 years, gradually tapering off to none now . I would hang in there, but stress that you also keep yourself well hydrated. And it can take a while for adrenals to catch up.

[Loyd in reply to Feeder]

Many thanks - I have started today on extra water. 🤞🤞