Advice please

[Nanny71]

Hi Im down to 2mg of steroids. No pain. Last 2 weeks have been suffering upset stomach dizzy spells fatigue. Spoke to Doctor asking if it could be adrenals. Dismissed instantly. I asked practice nurse about a test for this and she said never heard of one.Im off to France next week Champagne tasting. Im teetotal by the way. Just wondering if I have one of these episodes should I up pred for a while.🌺🌺

[SnazzyD]

Were you granted any kind of explanation? Presumably you told them about your symptoms? The practice nurse should know better or at the very least look it up because as any professional, one can’t know everything. I have quite happily had a GP google something in front of me.

I would take the Pred as and when you are suffering rather than just upping throughout. If it is all the time, perhaps it’s worth sticking at 2mg until the travel is over or going to where you were mostly ok. I would also be mindful of allowing lots of rest opportunities.

When I had these symptoms upon reducing I shut down my life as much as possible until my adrenals caught up. I wanted to avoid pushing my body into crisis repeatedly and having to keep popping up the dose to cope. One-off’s like this though, are not everyday.

When you get back, perhaps see another doctor and push them for an explanation if they say the same. You could have an early morning cortisol test for on the stop level check which is simple.

[Nanny71 in reply to SnazzyD]

Thank you 🌺🌺

[SheffieldJane in reply to SnazzyD]

Your penultimate paragraph really interests me. I have kind of instinctively shut down my life ie sleeping a lot, avoiding exertion, sleeping late and have felt really guilty about it. It is contrary to the diabetic nurse and the physiotherapist advice. It feels lazy, but I have to steel myself to climb the stairs. Stupidly, it didn’t occur to me that this slothfulness might have a purpose in aiding adrenal recovery. This is the second time I’ve been below 5 mgs and it is so much worse this time. Does this pass without treatment? I feel like a zombie.

[SnazzyD in reply to SheffieldJane]

I felt like a zombie for the best part of a year unfortunately. I still walked the dogs without fail but that was The activity most days. I think I spent quite a lot of spoons on dealing with my horrible live-in father in law. I made sure I didn’t lose flexibility and range of movement with slow motion floor exercises a few days a week. Aerobic exercise and getting my pulse rate up was not possible most days. I made sure I only used the upstairs loo to add in some kind of effort. An afternoon sleep was a necessity too. By the time I came out of it I was a complete weed but I’m not sure if I could have done differently.

Have you had your cortisol checked? Have you popped up the dose as a quick check to see if you rapidly feel better to confirm it is that and not something else brewing?

[SheffieldJane in reply to SnazzyD]

Yes 1 mg made a difference, it felt scary at 4.5, but I could have gone on. My Endo wants me to go in when I pass 5 mgs but I had a set back with my Pfizer jab. The inertia remains though and contradictory advice. Going to Australia in 2 weeks for 6 weeks. I think I might wait and take emergency supplies.

It mus have been unbearable with your horrible live in father in law. Stress is the worst at this time, especially that kind.

[SnazzyD in reply to SheffieldJane]

Sounds like it then if 1mg brought sweet relief. Advice may be contradictory but if you can’t you can’t and you do what you can. A long journey really isn’t a time to be a hero. There’s no way I could have done it but perhaps I was more of a lightweight.

Yes, I don’t know how we survived him for 10 years up to this Feb!

[SheffieldJane in reply to SnazzyD]

You are a hero in many ways. 🌺

[Ridge in reply to SnazzyD]

Can you describe what it was like coming out of it? I mean how did you recognise that you were and were the symptoms consistent? Or was it a eureka moment? Did you loose heart along the way?

[SnazzyD in reply to Ridge]

I just slowly got more good days than bad and it took more and more to reduce me to a wobbly thing. With any major illness I’ve never had a eureka moment, just a slow dawning that one doesn’t see unless one looks back. Lost heart a lot. Low adrenal function was psychologically harder to deal with than high doses of Pred because there was no clear end point and idea if it would get better.

[Ridge in reply to SnazzyD]

Yes 🙁. I find it harder than the pred anxiety as it is so undefined and could be other things - probably other things as well.

[SnazzyD in reply to Ridge]

Going into winter really doesn’t help. Have you had your vitamin D level checked?

[Ridge in reply to SnazzyD]

Perhaps I should as it has been low in the past!

[SnazzyD in reply to Ridge]

It affects every bit of you if it’s low, it seems. I go low even with supplements if I don’t take a high enough dose.

[DorsetLady PMRGCAuk volunteer]

Sounds very adrenal ish to me.. and probably many others…have a look at this -

healthunlocked.com/pmrgcauk...

-and your practice nurse needs to look it up! This info from just one NHS trust-sure yours has similar-

ruh.nhs.uk/pathology/docume...

Normally would say you need to ride it out, but as you are travelling might be wise to take a little extra for the time you are away….

[Nanny71 in reply to DorsetLady]

Thank you 🌺🌺

[123-go]

Hi. Looking at your past history it appears that you have been concerned about your adrenal function for some time and that your GP has a firmly rooted attitude of ‘doctor knows best’ with little capacity for discussion. Is there another GP in your practice that you could ask to see?

Enjoy your trip, follow good advice given and remember not to swallow 🍾😉.

[Nanny71 in reply to 123-go]

Thank you. I will try to put my foot down 🌺🌺

[Hirondelle]

I got down to 3mg and was feeling extremely tired. Rheumatologist asked surgery to do the 9am adrenal test. Very low. Results were marked by GP as ‘abnormal but to be expected, no further action ‘. Had a 9 hour bout of vomiting and diarrhoea. Rang the surgery who said not important probably gastroenteritis. Got in touch with my private rheumatologist who referred me to endocrinologist - synacthan test done at hospital. No adrenal function. Given leaflet which says vomiting and diarrhoea v dangerous and can lead to death. GPs know nothing about the adrenals so please don’t ignore this. Best wishes.

[Pixix]

yes, I had these symptoms really badly, for weeks on end. I went back to 5mg on Dr advice. Twice. New rheumy went mad & said I needed to reduce by 1mg every four weeks, & ‘stick with it’ no matter how sick I got. GP & I had discussion. I went slower. Had to put up with this symptoms yet again, but with more patience! Now slowly down to 2mg, & holding because I have other medical issues! Interestingly, the dizziness turned out to be orthostatic hypotension (my blood pressure drops like a stone when I stand up from sitting). It took a lot of grit to get to 2mg, & I’m not going back to 5mg again!! The second time I went back to 5mg was for a holiday, but I wished I hadn’t because I just have to suffer all over again! Oh & don’t get me started on fatigue!!!!! Your choice entirely, & just because that’s how tapering affected me, it may be quite different for you! Happy holiday. I don’t drink due to meds & am well used to it…wouldn’t be my idea of an interesting holiday, but France is lovely!

[PMRnewbie2017]

For what it's worth i was the same between 2.5mg and 2mg on three occasions over the past 6 years. The first time it caught me unawares and i thought i had a tummy bug, mainly because deathly fatigue has never been an issue for me. A bit lethargic yes, and very crotchety and over reactive! Despite using DL's taper, 2mg ish was always my nemesis. Then I got down to 1mg with no Adrenal issues and a basal cortisol test showed a huge level of morning cortisol! I was shocked. However the aches which i thought were DOMS as i continued to reduce to 1mg increased, and I realised I had overshot my optimal Pred dose. Never a dull moment with PMR!

[Avadip12]

Hi from my 10 yrs experience and having episodes like that and getting the test which was normal . Was the only thing offered was to go up to your previous dose and start lowering again . I am afraid our medical profession do not really recognise ( adrenal fatigue) they only respond to the life threatening adrenal crisis. This is why this site is so helpful , we understand and most of us have been where you are. I am in it at the moment , and the most my Dr offers is test for B12 and Vit D deficiency. I have been up and down on my steroids at the 6 mgs and below so many times . I would try and stick with my new lower dose for a bit longer and see if you can adjust . That last bit of getting off steroids is a very difficult stage one that I have never achieved . But I have upped my steroids to make sure I could cope with a holiday . But to give a real boost it has to be more than 0. 5 mg , and then on return you have to start lowering again again . What do we do ?

[jaycee444 in reply to Avadip12]

Think you are right about medical profession not recognising adrenal fatigue. Saw a young Dr at Rheumatology Clinic this morning who told me the extreme fatigue I am feeling at present at 5mg Pred cannot be caused by adrenal fatigue as that wouldn’t happen till between 2-3 mg. Also offered me a cortisol test which I refused at present because have read on here that its not worth doing till on a lower dose. Rather have one when Im down to 2 or 3 mg.

[Nanny71]

Thank you all you lovely people. Where would I be without you 🌺🌺