Sick and tired. Aka The Adrenal Zone?

[Soraya_PMR]

I was quite happy at 8mg early May. Chiro had rid me of extra pains, and my holiday was due. In fact I’d made up my mind that post holiday I’d be ‘more me’ and start getting on with things.

So on the flight to Menorca I obviously picked up some virus, by day 3 I had a ripping sore throat, day 4,5,6 I was stuffed with snot and sputum. Just how much mucous can erupt from one person in a few days? Don’t answer that.

I elevated my dose to 10mg for flight day, and day 3 when my legs seized, but it was soon apparent that the symptoms were allied to a virus and not true PMR, so I stuck at 8mg and continued for a week post holiday. Then I tried 7, managed 12 days with nausea before my thighs and hips informed me it was a no-go. 10,10,9 then 8 for another week. This week Monday 7, the rest of the week will be 8.

I guess I’ve entered the Adrenal Zone (da-da-duuuh, creepy movie music). Ugh! The nausea! The speedy gut motility! The fatigue? This is fatigue? Surely someone has drugged me! I didn’t think I could be MORE tired, but apparently I can. I sleep all night (Thank God for that mercy), can manage up to 11 hours asleep, then a little morning nap after a couple of hours, then an afternoon nap, and ....is it bedtime yet? Periods of activity between naps are exhausting, such as pressing buttons on the TV remote, or if I’m feeling particularly energetic, turning the pages of a book.

Cushings Dog and I just walked a very slow mile for a loaf of bread, it was a competition as to who would konk out first. I had visions of having to carry her home 😧 But we both made it to the sofa, just!

I hope my adrenals join in soon. Can’t stand this nausea. This bit is worse than the PMR stuff. I thought that was awful enough, but this!!!!! Someone please tell me it won’t last toooo long?

[PMRpro Ambassador]

Can't - sorry. To have as violent a reaction as that at that level suggests a couple of things to me: one is that really your body and its PMR isn't ready for under 8mg yet.

The other is that you could maybe do with persuading your GP to order a synacthen test already. It SHOULDN'T, theoretically at least, be a problem yet but maybe you are a "50% person" and only getting half that 8mg oral dose. Which definitely takes you into prodding the adrenals awake territory - and you have been for a while. And it sounds as if they might be being very reluctant.

[Soraya_PMR in reply to PMRpro]

Persuade my GP to DO something??? Ha!

But what you say about the 50% absorption chimes with my thoughts:

~started with 20mg and 15mg didn’t cut it.

~early morning dose gave me good mornings and poor evenings. So I reverted to 8am dose.

~speedy gut may be exacerbating things. Currently avoiding anything (fruit, too much veg) that might increase speed, and hoping for a bit of stability.

Definitely less nausea and gut speed today (Monday 7, Tues 8, today 8) so maybe I’ll just keep plugging away, see if occasional sevens spark anything. See my consultant in September, so might have a clearer picture by then. I know I’ve got to dip my dose to spark my own cortisol, but this nausea is awful. Never even had nausea when pregnant, it’s not ‘my thing’.

[Soraya_PMR in reply to PMRpro]

I wonder if trying plain pred might help? That gets in my system in about an hour and a half (compared to 4 hours for coated). Is there anything to suggest that plain pred allows better absorption, as in more of the intended dose, as opposed to speed of absorption?

[PMRpro Ambassador in reply to Soraya_PMR]

If you have a "funny gut" then very possibly. The rumours that the absorption of gastro-resistant pred was unreliable were based on a study done in patients with Crohns or something similar. If your stomach works well it only takes an hour or so, if lower down you have intestinal hurry the coated stuff may not be there long enough for good absorption.

Do you have a choice of GPs? Or a locum while some are on their jollies?

[Soraya_PMR in reply to PMRpro]

Tried for a different GP before, but ‘not allowed’. Had to wait til my ‘named’ GP came back from his jollies. (One assumes for an emergency you could, but I’m not playing the game of turning up at 8am and waiting, and I don’t consider it urgent.)

[PMRpro Ambassador in reply to Soraya_PMR]

I think that that is not allowed - but practices do play that card when they can get away with it. If they want to enforce it they should allow the patients to choose their named GP - though then there would be one or more no-one wishes to see!!!

[SnazzyD in reply to Soraya_PMR]

I do believe you can see whatever GP you want. It was certainly the case in all the practices I’ve worked in. Whether they are available is another question and with book on the day appointments it’s pot luck.

[SnazzyD in reply to Soraya_PMR]

During my brief career of taking uncoated Pred I noticed how quickly it went into my system and didn’t seem to have many barriers. With coated Pred I noticed that it was much more susceptible to being reduced by faster gut motility and full stomach.

[PMRpro Ambassador in reply to SnazzyD]

And the fact it doesn't achieve as high a peak blood level - and for some people that may be significant.

[Soraya_PMR in reply to SnazzyD]

Food for thought, thanks. Might give the plain a few day’s trial, get the ranitidine in hand! Although at lower doses maybe the gastritis will be less?

[PMRpro Ambassador in reply to Soraya_PMR]

I could manage small amounts of plain. Try it - and in the middle of breakfast maybe?

[HeronNS in reply to Soraya_PMR]

Get in a supply of plain yoghurt, too. The hint to use it when taking pred (which I've actually had no trouble with) has helped me a great deal when taking aspirin, or bedtime calcium which I used to find a bit problematic. Just a large tablespoonful seems to be enough.

[Soraya_PMR in reply to HeronNS]

There’s always a load in the ‘fridge. It helped some with the pred, but ultimately I had to go to coated. I still eat the yogurt though 😉

[DorsetLady PMRGCAuk volunteer]

Hi Soraya_PMR,

Can’t promise it goes away quickly if it is Adrenals. I was wiped out for a lot of the time as I tapered from 6mg down to 3mg (very slow taper, 0.5mg a time, with a couple of enforced longer spells at one dose, about a year in total).

But fortunately I only had fatigue, no nausea.

As PMRpro suggests maybe you need to be at 8mg PMR-wise.

I was on uncoated Pred, so it might be worth trying those to see if they help - plenty of yogurt should help to keep the Randitidine to a minimum.

[Soraya_PMR in reply to DorsetLady]

Thanks for this.

No!!!! Not doing a year of nausea!

My rheum said to drop 1mg a month down to 7. Hmm, obviously I haven’t done that, I’ve dropped straight 1mg at a time, but not monthly. From 9 to 8, and from 8 to 7 I had no steroid withdrawal symptoms. Which maybe lulled me into a false sense of security? Plus clearly the rheum’s instructions are bouncing round my head somewhere. ( Why oh why with the pred forgetfulness do I not forget this?)

So if I take on board advice and suggestions from PMR pro and consider myself (in theory) to be a ‘fiftypercenter’, ( so I’m maybe getting 4mg) combine that with DL advice re dropping HALF a mg SLOWLY in this danger zone, plus nevagiveup’s reminder that viruses can take a while, and SnazzyD’s observations re plain v coated and gut motility, I might have a recipe for success. At least a better plan than a GP visit 😉

Thanks guys, knew I posted for a reason 😄

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Hi again,

Have a look at this re adrenals et al - not specific to GCA/PMR but useful

healthunlocked.com/pmrgcauk...

[Soraya_PMR in reply to DorsetLady]

Ah yes, have read before, and just read again. Thanks. Will double check my vitamins.

Cholesterol ✅ conscious decision to increase fats as opposed to carbs.

Sugar ✅ mostly gone, need wholemeal carbs though or I lose weight.

Alcohol, errrm, maybe a few Polish vodka nights have not helped 🤐

Caffeine ✅ ditched a year+ ago.

Sleep ✅ yes, mine and your quota combined 😴

Joint pain, yes! Forgot that, wrist and knee, gone again now when I upped to 10.

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

I never found alcohol, or lack of it in first 6 months when on stupid doses of Pred, made much difference. A little sluggish maybe next morning, but no more than pre Pred, pre GCA.

According to one GP, anti inflammatory drugs were/are taken by medical students to get rid of hangovers! So those on Pred should be okay!

Please note: that’s not official medical advice😏!

[Soraya_PMR in reply to DorsetLady]

TBH I’ve always found red wine to be helpful (pre and post pred).

But 12 shots of vodka may have been one too many! No, actually I doubt it was the alcohol, it’s a family recipe and includes lemons and a LOT of sugar. There, see, I said lemons weren’t good for me 😉

[nevagivup]

Soraya, I no longer fly anywhere and haven't done so for 5 years now. Every time I flew I contracted some virus, which for me always leads to chest infection. I am susceptible to bronchitis and have asthma and do become very sick indeed. It is not worth it for me. The worst was in Madeira, when we went with two friends for a week. Day two I got the throat, and by day 4 was in bed with a nasty cough, able to eat only jelly and custard. The other three went jaunting and dinner dancing. (I'm like a sick dog - go away and leave me alone!) So, really ill on the flight back, but I made sure not to cough into the cabin, coughed into a thick scarf instead and used lots of hand sanitiser.

Went to Rome from London by train. Marvellous. Fresh air, comfortable, clean. Fast service. Stayed overnight in Zurich. Okay, so it is a longer journey than flying, but you get to see the countryside and mountains. And I didn't gt a chest infection at all. Having gone on to secondary adrenal suppression I am now on Hydrocortisone and even more susceptible to infection. I will never fly again. I do not miss airports, queueing, flying for hours in cramped conditions. Maybe it will just take time for you to recover from the virus? i hope you get answers, treatment and can feel a lot better soon.

[Soraya_PMR in reply to nevagivup]

Thanks nevagiveup. Yes, I do believe I was ‘quite poorly’ and spent 2 days in bed (including my birthday 😞) But not wanting to ruin my friends’ holiday, I did keep a lid on quite how poorly I felt. I’d have given a lot to have been magically transported back home. Of course no-one else succumbed, their immune systems work I suppose. After the return flight I had to climb 2 flights of stairs immediately, and my legs just seized (12 hours post pred dose). There was me and this old boy who clearly had a dreadful chest clinging onto the bannisters, while the world rushed by.

You may be right, maybe I need to accept it was a nasty virus, and give me some time.

May I ask what were your symptoms before you were diagnosed with 2ndary AS?

[PMRpro Ambassador in reply to Soraya_PMR]

"After the return flight I had to climb 2 flights of stairs immediately, and my legs just seized "

The primary reason for requesting airport assistance!

We are seriously considering driving to Malta in the autumn - OH almost always picks something up on the plane. Not an option for getting Korea next week though. And his worst chest infection last winter (me too) was caught from a family visitor - so if he arrives with a cold that sent him to bed again we'll send him to one of the hotels in the village...

[Soraya_PMR in reply to PMRpro]

Airport assistance. Yup yup yup I know I know I know!

But I refuse to cave! It’s just me. I’ve always refused to accept disability. Refused a parking badge when I had slipped discs and could barely walk at all. Hubby says I am the most infuriating, stubborn, frustrating person he’s ever met. Some would say I’m just plain stupid.

For all my ‘I can cope’ attitude, it hasn’t done me much good has it? ⬅️ Rhetorical!

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

It’s not caving in - it’s being realistic and admitting to yourself you need help - and that’s difficult first time around I know, but why make life difficult when you could make it so much easier!

No disgrace in swallowing your pride once in awhile! And in most cases those helping you are nice people! Just think of it as keeping them in a job.

[PMRpro Ambassador in reply to Soraya_PMR]

Lot less embarrassing than having to be rescued!

[HeronNS in reply to PMRpro]

webmd.com/a-to-z-guides/fea...

The latest trip we made was the first one in ages when we were both travelling and neither of us got sick! I made liberal use of my stash of alcohol wipes both on the plane and in the hotels. Some things never get cleaned, like the tv remote, or light switches, so we now always make some effort to wipe them down.

[nevagivup in reply to Soraya_PMR]

Total exhaustion, completely brain fogged, barely functioning, dragging myself around, struggling to climb one flight of stairs., couldn't walk for more than two minutes without stopping to rest, for many months. My GP told me I was just not accepting my age, that I should just relax and take life easy. It got to the stage where I was fainting, on 3.5 mg. I asked for a Synacthen test, and even with the evidence showing AI I was told to go up to 5 mg. It didn't work. Up to 7.5 mg. Nothing changed. Saw a locum GP who said it had gone on too long and referred me to an Endocrinologist. To save time I paid for a private consultation. Medication was changed to Hydrocortisone 25 mg a day in three tapered divided doses. Brain fog cleared up, energy was slower to return. It also has its drawbacks and side-effects, but the difference in how I feel and look in 2 months is amazing. Do ask your GP for help if you need to.

[Soraya_PMR in reply to nevagivup]

Thanks for that info nevagivup. I shall bear that in mind, but don’t think I’m close to that yet. So glad you’re feeling better. Will there be any further attempts to reduce?

[nevagivup in reply to Soraya_PMR]

Endo will decide after 4 months on Hydrocortisone. I'm hoping to get to 15 mg a day, gradually, as it is a standard dose. By the way, I was on Pred for 9.5 years, with frequent PMR relapses, hence the secondary AI.

[PMRpro Ambassador in reply to nevagivup]

Is the PMR problem better too?

[nevagivup in reply to PMRpro]

Not had a relapse since post-virus in January. I am hoping that with feeling so much better and stronger that PMR wont raise its head, unless another virus catches me, and maybe then it wont? I'll post if it does.

[CT-5012 in reply to nevagivup]

My OH used to work for BR and gets free travel on French railway too. Many happy family holidays by rail. One time the pupil exchange party went coach and air my son went by rail, ferry, underground (including changing metro lines in Paris) door to door he was twenty minutes quicker than the rest of the party and I’m sure it did his self confidence a world of good, he was fifteen at the time and really enjoyed the experience. People on the train noticed he was reading a book in English and started talking to him, improved his French!

[nevagivup in reply to CT-5012]

You gotta love train travel! You learn much more about countries and their people than when flying. It is so interesting at train stops in small towns and villages to see who gets off and who boards the train.

[CT-5012 in reply to nevagivup]

In 1966 OH and I went to Istanbul and back by train fantastic time we had. Met lots of different people. The journey was just as good as the holiday but couldn’t cope with it now. 😂

[Charlie1boy]

Really sorry to read your post Soraya_pmr, but the replies and especially that from DL are very interesting to me!

One might think that the fatigue gets better as you taper down, but not so with me. Am now at 4mg daily, and, seemingly, more tired than ever, and with the occasional nausea day as well. I sleep every afternoon for a good half hour, otherwise I find it hard to get through the day.

I know my situation re fatigue is made worse by the hormone treatment I'm on for prostate cancer, a side effect of which is hot sweats hourly. That I could do without, but at least it's less than a year now till I complete the injection programme.

Hope you start to feel better soon. As you know, getting past the 8 to 7mg barrier is notoriously problematic; it certainly was for me, so I guess you are going to need patience galore.

Good luck

Paddy

[Soraya_PMR in reply to Charlie1boy]

May your ‘less than a year’ pass swiftly and successfully for you Paddy.

I’ve an idea re the hot sweats, I guess it’s comparable with similar during the menopause. Summer is worse, I recall showers in the wee small hours, or standing in the garden. Plus another go at flushes with pred. It’s a wonder we’ve not all dissolved!

Patience! Patience? Hmm, where’d I put my bag of patience? Oh I remember, I never had any 🙃

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Did any of us? That’s probably why we’re here in the first place!

[Soraya_PMR in reply to DorsetLady]

Bilateral shoulder and pelvic girdle pain and stiffness, raised ESR & CRP (maybe) and a total lack of patience.

Yup! Diagnostic tool updated 😉

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

😋

[DorsetLady PMRGCAuk volunteer in reply to Charlie1boy]

Paddy,

this may help, as I said to Soraya not specific to PMR/GCA but useful info maybe

healthunlocked.com/pmrgcauk...

[Charlie1boy in reply to DorsetLady]

Hi, thought I'd already sent a reply to you, but think it must have got lost!

Anyway, thank you for your interest and reply. Lots of really interesting points in this article. I'm thinking of trying the 8mg every other day and see what happens!

Guess I'll print out the article for future reference, as I have a feeling I'll be needing to read it again.

Thank you again - it's always good to read your posts.

Cheers

Paddy

[DorsetLady PMRGCAuk volunteer in reply to Charlie1boy]

Hi Paddy

I didn’t find this until I was off Pred, so can’t give give any advice on whether the one day Pred/ one day none works.

But anything’s worth a try I guess, and it probably depends on how active your PMR still is. The last thing you want is a return of symptoms.

But as they say - nothing ventured, nothing gained!

[karools16]

Don't be so hard on yourself. Walking a slow mile to the shop, is far more than I can manage, so, good on you!

[Soraya_PMR in reply to karools16]

I did need to force myself, not been out for days. However from past experience I know a walk does me good. Multifaceted good, bones, lungs, posture, psychologically, just missing the motivational oomph.

[PMRpro Ambassador in reply to Soraya_PMR]

Tell me about it - but now OH has his lung back from swimming maybe we'll get back to the routine of our daily walk. But what with weather and not wanting to go for a wander on my own haven't done much for months - and boy can I tell!

[Soraya_PMR in reply to PMRpro]

Yes it’s quite debilitating isn’t it (Not walking). Take it slow now! And short!

I do have to go out again today, another mile in the opposite direction, repeat prescription request. That’ll motivate me.

[PMRpro Ambassador in reply to Soraya_PMR]

Haha!!!

[SheffieldJane]

I am there too. This morning my legs felt really weak and as if I had restless leg syndrome although it was not helped by moving. It was like pins and needles though less defined and kind of unbearable. A totally unfamiliar and frightening symptom. How you would imagine a neurological condition to feel. I am in a new scary country of symptoms.

[Soraya_PMR in reply to SheffieldJane]

Feeling any better now SJ?

[SheffieldJane in reply to Soraya_PMR]

Yes thank you Soraya, as regards the weird legs. It is probably viral as Paracetamol had a small positive impact. Still very blocked up with a tight chest and creepy skin. Caught in one downpour - my mother was right.

I think you and I are at a similar stage, I can relate to everything you say about how you feel ( the autoimmune disease that is). It’s bleak at times.

[Soraya_PMR in reply to SheffieldJane]

I think I’m more irritated because I felt so much better BEFORE my holiday! Viruses certainly knock me for six nowadays. Hope your’s is soon on the wane.

I’ve given up re the nausea, couldn’t take it anymore. After Monday at 7 (awful) and 8 the rest of the week when the nausea lessened a little but did not go, I took 10 yesterday and today. Nausea now gone, guts calmed. I’m staying here for a few more days!