Adrenal glands

[LucilleG]

I’m tapering from 6 mg to 5.5 mg and have had 2 bouts of nausea, with the first instance being a lot worse than the 2nd one. I have also been a lot more tired than usual since the start of this taper. I get at least 7 hours sleep a night and still need one or two naps a day.

As I continue to taper, what might I expect? I know that nobody can predict this, but what have others experienced? For people who have gone through getting their adrenal glands to start producing cortisol once again, how long did you have symptoms? What were your symptoms? And were the symptoms constant, or did they come and go?

[Kendrew]

healthunlocked.com/pmrgcauk...

Sent you this link from FAQ'S.

Others will be along with further advice shortly.

[PMRpro Ambassador]

Sorry Lucille - how long is a piece of string? Predictions are impossible in this game.

[LucilleG in reply to PMRpro]

Yup, I know. Just asking for the experience of others as they are going through or have gone through this point in reducing Prednisone.

[DorsetLady PMRGCAuk volunteer]

My only symptom was random bouts of fatigue seeming7for no apparent reason - lasting about 8 -9 months in total whilst I was completing a very slow taper from 6mg down to 3 mg. Fortunately nothing else - nays as you will see from link Kendrew supplied nausea is a common issue.

Really only a very slow taper, timewise and dose wise, and patience [resting when you need] is the only way to get through. Obviously if your symptoms worsen as described in one of the links you need to seek medical advice…. But that is quite rare for most.

[LucilleG in reply to DorsetLady]

Thank you for this. It seems like I’m getting random bouts of nausea, although at this point, it’s only happened twice and it hasn’t been that bad.

[DorsetLady PMRGCAuk volunteer in reply to LucilleG]

Okay, but as you get lower on the Pred, and your adrenals have to work more to make up the short fall between the dose and the normal physiological level of cortisol your body requires to get through the day your adrenal insufficiency systems may increase. So just keep an eye on things…

[LucilleG in reply to DorsetLady]

I definitely will! I have an appointment with my rheumatologist in 2 weeks. The last appointment I had was 6 months ago and I’ve gone from 8 mg to 5.5 mg in that time. They won’t think that is good progress, but I do. Just looking back on my notes on that appointment - they said "have to be tougher" - do they think it’s a good idea for the inflammation to build up? I think the niggles I feel are signs that I have to listen to to make sure I don’t have a flare. They were also curious to why I had osteoporosis. Do they not know that this could be a side affect of Prednisone? Sigh. I will need to be prepared for this appointment as I know they will have wanted me to be way lower by now.

[DorsetLady PMRGCAuk volunteer in reply to LucilleG]

Unfortunately many don’t like prescribing steroids, but know they have to, so always in a rush to gets patients off it… neither do they ‘get’ all it not quite as easy as they think. Nor do they fully understand the vagaries of PMR despite being the so called experts - it doesn’t do what they think it should.

Doesn’t make life easy for their patients.

[9lives in reply to LucilleG]

gosh LucilleG

You have done very well to go from 8 mg Down to 5.5 mg in just 6 months!. That would of taken me twice as long . And probably did. Well done you xx

My taper has been so much slower, but you are right not to let the inflammation build up. Listen to your body.

They always in a hurry to get us off the steroids.

I’m currently on 1 mg , which I have been for a year now, but just starting to taper to 1/2 mg , on the DSNS .I’ve never really suffered from nausea as such but definitely fatigue over the years. But much improved now.

I was first diagnosed in 2016, so taken a while. Mr GP said I would only be on steroids for 18 months ha ha xx

Good luck x

Carole

[Chiqui1950 in reply to 9lives]

very informative and hopeful!! Thank you!!

[Rene20 in reply to 9lives]

Me too diagnosed 2011 gp said pmr would burn itself out in 2yrs,! Was down to 2mg for last 2yrs then had a flare last Oct back on 15mg.now tapering to 8mg for 4weeks then 7mg 4weeks if all goes well.

[9lives in reply to Rene20]

It’s crazy that GPS tell us this. !! Where does their info come from?? It seems like more funding and /or awareness to GPS /rheumatologist . wouldn’t go amiss.

Good luck x

[LucilleG in reply to 9lives]

I had a crazy journey when I started on Prednisone back in May 2021. I started out at 40 mg and got down to 7.5 mg late July), but started getting pains so was told by the GP to go back to 10 mg. I stayed there for a month and then went down to 8.5 mg for 20 days, then 7.5 mg (10 days), 6 mg (16 days), and then 5 mg for a month, which was mid-Dec 2021. The GP who was meeting with me every 2 weeks always told me that if I had pain, to go back up to the previous dose. When I finally met with a rheumatologist at the end of Nov 2021, they told me me to go down by 1 mg every month. And when I asked what I should do if there was any pain, they said to call the office. I went down to a straight 4.5 mg in mid-Dec and within days, I had all the pains I had before (neck, head, groin, hip), so I guess the inflammation had been building up for awhile. When I call the office, they were off for the holidays. so I went back to 7.5 mg and stayed there until I spoke with the rheumy in early Jan 2022. They said to go down by 0.5 mg every two weeks. When I got to 6.5 mg, the pain came back at the base of my head. When I finally met with the rheumy on the phone in mid-March, I had gone up to 11 mg, then down to 10 mg, so was at 9.5 mg at that time. They were very upset with me - it was an awful appointment. I then found this wonderful group and have felt much better about things and know so much more than I ever learned from the rheumy! Those fast reductions without tapering were awful. I'm so happy with the DSNS taper!!!

Oh, and when I spoke to another GP about a referral to a rheumatologist when I was first diagnosed, they told me I wouldn't get an appointment for almost a year and that my PMR would be in remission by then!!! 😆😂

[PMRpro Ambassador in reply to LucilleG]

If only!!!

[Hopingsail in reply to LucilleG]

Just wondering how you get contact with your GP so often? My PMR began roughly same as you and currently almost down to 5mg . In all that time have managed a couple of phone calls -only one instigated by him when after 2 years rang out of the blue to say I ought to be on bone density meds! I insisted (and I mean insisted!) on a density scan first - which did confirm a need. And what is a rheumatologist?! - though from what I read on here that’s a mixed experience.

Am just really grateful for our local independent pharmacy ( through whom I order all my meds as if I put the order into the surgery it is either late or incorrect!) and the advice here. Having worked in NHS for seven years (and loved it) I have to say that I feel uncared for at GP level. I understand their heavy workload and that the NHS has been chronically underfunded for over a decade, but Lucille’s surgery still seem to have their act together ….

[LucilleG in reply to Hopingsail]

I don’t have a family GP right now (not sure when I will ever have one), so I have been going to a walk-in clinic. And the way things have been going, they aren’t really walk-in clinics anymore since they aren’t accepting any walk-ins. I was able to book short phone appt with one of the GPs at this clinic every few weeks after my diagnosis. They just wanted to keep in touch about the amount of pred I was on, the results from CRP blood test, and what level of pred to go down to. They also referred me to this one rheumatologist and the first appt was going to be a year away. I asked to be referred to another one and had first appt about 6 months after my diagnosis. The first rhuemy did call in April 2022 but I couldn’t switch to them. From what I’ve heard that one is no better than the one I have...what do they teach them in rheumatology school? Certainly not a good bedside manner. And they don’t seem to keep up with current research about PMR and GCA. Anyway, I don’t meet with the GP anymore, just the rheumy (first 3 appointments were every 3 months, last one is 6 months - all over the phone. I’ve never met this doctor in person or via video). I’ve been lucky enough to take advantage of a service for an online Dr of the Day Program and I can call to have a video appointment with a GP.

[9lives in reply to LucilleG]

geez !! unbelievable, thank goodness you found this site. Xx hope you doing well xx

Carole x

[Chiqui1950 in reply to LucilleG]

Dear Lucille G!! I habe been at 6 twice before— and I had two flare ups at 6 trying to taper— i am taking very slow this time!!— i listen to my body and pay close attention to my lab results ESR and CRP. — much better this time. All the best!!

[PMRpro Ambassador in reply to Chiqui1950]

You aren't heading relentlessly for zero - you are looking for the lowest effective dose, the lowest dose that gives the same relief from symptoms as the starting dose did. If you flare repeatedly at a similar dose that is a sign you are there. Nothing will get you past that dose - however slowly you go.

[Chiqui1950 in reply to PMRpro]

ThankYou!Ireallyappreciateyourcomments!

[Chiqui1950 in reply to DorsetLady]

thank you so much!! So helpful and uifting!! I am at 6 mg right now

[Koalajane]

I used to keep sugar free mints on me to suck when I had the nausea. Hope this helps

[SnazzyD]

I felt similar symptoms. You can help yourself by not doing too much which can cause the requirement for cortisol to go up. If it’s not coming from the Pred so much but your adrenal glands aren’t really working properly, when you put an extra demand on the body you can really feel it. Even a short drive to the supermarket floored me for the rest of the day. I slept in the afternoons every day and if I felt nauseated and tired I rested.

[LucilleG in reply to SnazzyD]

Thank you so much! This makes so much sense. I’ve noticed that doing everyday things really take a lot more energy than before. I walk my dog twice a day (just leisurely walks) - doing anything beyond that, like grocery shopping, really knocks me out. I’m off work right now, so will make sure to rest when I need to and try not to get stressed out. The first day I was dizzy and nauseous, I stayed in bed and my husband and dog went for the morning walk without me.

[Merryfield in reply to LucilleG]

These posts about adrenal re-functioning are so helpful.

[SnazzyD in reply to LucilleG]

I can’t imagine working through this, but then I had it pretty bad. You do need to see these symptoms as a warning light flashing, not as an annoyance to be powered through. Do read the link Kendrew sent you.

I lost the best part of a year to feeling like this but it came good in the end. Sometimes it is tempting to whack it back up to 8 or above to feel better but all you are doing is telling your adrenals they can go back to sleep again. However, in certain circumstances it may be an emergency action you need to take, even a couple of extra mg but it’s knowing when.

[Bluey-1 in reply to SnazzyD]

Thanks for this advice. I’m not at this stage yet re adrenals but yesterday I felt so well and did too much - half hour brisk walk, bit of shopping then got bogged down in an unexpected stress situation with my car. Result - today a wipe out. You really have to listen to your body with these illnesses. I’m now going to eek out the spoons so we can visit good friends this week which will be good for the soul.

[LucilleG in reply to SnazzyD]

Thanks for this, SnazzyD. Today, I woke up to no niggles in the neck! I took 6 mg today and will be taking 5.5 mg over the next 3 days. I will be at 5.5 consistently by the 2nd week of February. I was going to start the taper down to 5 mg, but will probably wait until March to do that. I really don't want to increase the pred at all, so I think going a bit slower will help with that. And knowing that I will probably have bouts of fatigue along the way, I will just ride them out. As well, I may feel dizzy and some nausea every now and then, but to also keep an eye on that if it goes on too long or is really bad. My husband, dog and I just got back from our morning walk and had breakfast - my dog and I are now back in the bedroom for a morning nap!

[SnazzyD in reply to LucilleG]

I stayed at the 100% new dose for at least 2 weeks. My reduction rates varied from 6-14 weeks per 0.5mg.

[LucilleG in reply to SnazzyD]

Thank you! I will definitely stay at 5.5 mg for at least 2 weeks and then start the taper down to 5 mg in March or so.

[Chiqui1950 in reply to SnazzyD]

Wow!!thankyouo!!

[Noraflorence in reply to LucilleG]

What a relief to hear your symptoms LucilleG and to read the links. I am tapering from 6.5 - 6 week three of DL taper regime. I have been feeling nauseous and very tired especially after breakfast. Also sleeping more than usual. I find that eating helps but not in the long term with increased weight gain. I had hoped this would start coming off about now but heyho. I can now assume that these symptoms I am experiencing are not unusual as the adrenal glands start to get active.

[orangemax]

I'm in a very similar place as you. I'm just starting DL's 7 week taper from 5.5mg to 5. Some nights I get 9 or 10 hours of sleep, and I'm tired all day long. Get nothing done, and I feel guilty about it. Even take a nap. Can't help it! But I know what it is, so I'm just dealing with it. Occasionally I get a little nauseated, but usually a few sips of diet ginger ale or 7-up helps a lot. I'm just taking it one day at a time. Good luck Lucille!

[Rachmaninov2 in reply to orangemax]

Don’t feel guilty. I’m taking 7mg, not tapering at the moment and some days I’m unable to do much. As others have said, you just have to listen to your body. 🙂

[Zebedee44]

Thanks for raising this subject Lucille. I feel like I am just entering a long tunnel as I taper from 6.5mg to 6mg, not even really knowing if I should expect to feel any symptoms of adrenal insufficiency at this level of pred. This is the lowest I have achieved after six years with PMR and I am pleased to find I have fellow travellers on this bumpy ride. Chrissie

[Poshdog]

Hi LucilleG, don't know if this is any help to you, but after intense nausea after anti biotic and after drinking lots of water to compensate I came across article on electrolytes. After drinking a litre of unconcentrated apple juice yesterday my legs muscles feel mine again, magnesium spray to spoil them further - a beginning? Such hard work. X

[Seacat30]

I went all the way down to 2mg without tiredness or other clear signs of steroid withdrawal. I developed tiredness and much more widespread joint and muscle pain at 1.5mg. At 1mg I have indigestion and a vague feeling of nausea - particularly under stress (which is unavoidable at the moment).

[Janstr]

I have found that drinking small amounts of ginger beer & ginger tea helps with the bouts of nausea

[LucilleG in reply to Janstr]

Yes, I bought small tins of ginger ale...drinking it now reminds me of when I was a child and my mom would give it to me when I had an upset stomach - she would add a little bit of warm water to take out the bubbles.

[venezia1]

You don't say how ling you have been taking prednisolone? If longer than sux ir seven years it may be that your adrenals will never "wake up" again and you will need a substitute - ask for a synacthen test.

[LucilleG in reply to venezia1]

I've been on Prednisone since late May 2021 (more info in my profile), so I guess 1 year and 9 months.

[venezia1 in reply to LucilleG]

OK - I was talkingxabout 7 or 8 years..

[Sharitone]

Both timers I've started feeling sick and dizzy in the mornings, I've gone back up slightly to the previous dose of pred for a bit longer, then at the next attempt, it works better. Still wiped out though. Also find it seems to cause constipation, which, as far as I can see, no one else has mentioned as a symptom.

[Thirkelly]

So glad you asked as I was scrolling through looking to see why I might be feeling rubbish and now I know a lot more!

[Gossiplady]

sosorrytohearyourproblem.Forgivemylack ofspaces.IuseQueasysweets.Onlineofcourse.

[DorsetLady PMRGCAuk volunteer in reply to Gossiplady]

Have you heard anything back from HU about the no spaces issue?

[Gossiplady in reply to DorsetLady]

silencereigns!

[DorsetLady PMRGCAuk volunteer in reply to Gossiplady]

Hmm ..that sounds about right -let’s hope something is happening in the background.

Previously it’s only been on iPad or iPhone but okay on PC/laptop -is that true for you as well?

[PMRpro Ambassador in reply to DorsetLady]

I have had an email to say they are looking at it ... Don't hold your breath but hope springs eternal ...

[Gossiplady in reply to DorsetLady]

onlyuseiPad iPhonenotlaptop.Tried goingthrough websitebutitisthesam.Thankyoufortakinganinterest.Makesachangeforyoufromtaperingproblems!Lol.

[PMRpro Ambassador in reply to Gossiplady]

We get these gripes about HU quite a lot too!