I think I need some help . I seem to be in the middle of yet another episode of adrenal insufficiency, symptoms tearfulness, backache, weight loss, lightheaded dizziness, awful fatigue and catarrh which wakes me up wheezing at night. Up to today I had resisted the temptation to take extra Pred but in order to get the Christmas dinner on the table I took an extra .5mg. I understand that I need to resist upping my dose as much as possible in order to give the old adrenals a chance to pick up but just how far do I safely go depriving my body of extra Pred ?
Would it work to take extra for a 2 or 3 days then back to usual dose ?
I seem to be finding that stress (in this case Christmas) is the trigger, last time it was a trip to Ireland. I have a cruise booked for the end of March and feel that I need to find a way to of coping with these episodes before then.😵💫🤔
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Pandora2
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Hi, that is unlikely to happen unless you are having symptons of GCA or have GCA and are having a flare. When you get to these levels of Pred your Adrenal Glands are having to wake up and start working again, something they've not been doing for a while because the Pred intake has done that job for them. The only way to restart them is to reduce your Pred intake and until they fully come to life again it can be a very difficult staff to get through. Upping the Pred gives you quality of life back but puts off the day when you have to through it again. Some people are fortunate and the glands wake up with no problem but for others it's a really difficult and trying stage to negotiate.
Link below to FAQ'S and Adrenal Glands info. Related posts will also appear.
As already stated, blindness is linked only to the emergence or presence of GCA and not specifically to the symptoms mentioned by Pandora2. They relate far more to the side effects of the adrenals trying to wake up.
I'm currently on 2½mgs of pred and going through a few struggles related to adrenals needing to wake up also. I'm experiencing the extreme fatigue and was tempted to increase my dose over Christmas but I decided to just 'run with it' and see how I felt. I've been no worse & absolutely fine, and enjoying a few days with my family.
People expect it to be much easier to taper down when on lower doses, but in actual fact, it's much more difficult to navigate your way through this period and requires patience and an understanding of what's actually happening.
Morning all, I too am struggling with the decreasing of Preds, finding it really challenging. Been on 60mg of Pred since August because of GCA initially started off good in September to lower the dose of Pred, then had a flare up so had to increase again. Managed to get down to 40mg last week then Sunday for the first time in long time felt a lot better and went to friends for dinner, and yes in the night GCA and stiffness and pain in shoulders and neck, started again, was quite severe started getting jaw pain, so upped Pred to 50mg which I am on now for 2 weeks, but was wondering maybe if I decreased the Pred by 2.5mg instead of 5mg every 2 weeks that may be easier on my system? Finding it all very frustrating, but realise the real dangers of GCA. Spoke to my Rheumie who is very understanding but pointed out the dangers, so the better of the 2 evils is the Pred for now.....he want me to get down to 5 or 10mg.....
You Rheumy may want you down 5mg or 10mg, but to be honest that’s not his choice - it depends on the activity of your GCA. As for ‘the dangers’ - with GCA the dangers are more likely to be too little Pred maybe resulting in sight loss rather than the dangers of the Pred.
Agree that a small increase would be better - it is usually easier to reduce on the higher doses of GCA, but that doesn’t apply to everyone- and as I said there is too much at stake if on too low a dose.
Thanks to all for your helpful comments, I’ve had a decent night’s sleep and am atm getting through the morning aches and pains. I should have mentioned I have PMR and not GCA. and am on 5mg of Pred . I’ve taken 6mg this morning but realise I can’t carry on increasing every time I feel the need, but maybe at times like this when I have guests in the house and no one else to do the cooking I don’t have much choice. I mentioned to the nurse practitioner I see sometimes that maybe decreasing by.25mg may be the way to go , she didn’t sanction the idea but I think I may give it a try anyway. Thanks again for help and interest. 🌹❤️
hope you're feeling a bit better i too am reducing my pred am now on 6mgs but having the same symptoms of sore stiff wrists shoulders and arms due to PMR. your nurse practitioner won't sanction anything she can't risk contradicting the original prescription so not worth going on her advice or not as the case may be. the experts on here are worth taking note of and they recommend listening to your own body. i have been tempted to increase back up to 7mgs but have decided to hang on and see what happens giving myself 1 month before increasing again if needs be. i like you am 81 however live alone so don't gave to worry about providing christmas food and hospitality to anyone. perhaps easing back from your domestic commitments might also help stress levels. anyway best wishes you're not alone.
Thank you Reclus for you wise words, we oldies need encouragement , I certainly do. I don’t know what I’d do without this forum. We’ve spent years looking to medicine having made leaps by the time we needed it most only to find that it’s more difficult to benefit from it one way or another when we get to our age. All the best and take care🌺🌹
Actually at low levels of Pred 0.5mg can make a big difference whether PMR or adrenal wise., and whilst agree that you don’t want to up dose too often, sometimes you have to get through the day. And agree the smallest reduction yiu can do will help adrenals- some medical don’t always a get that….
I too am at 6/5.5mg of pred daily and have been dealing with the challenges of tapering and adrenal insufficiency. I found I had to taper over 14 weeks as opposed to my regular 7 week taper (repeating each drop twice, for example 2 weeks at one dose of 5.5, then 2 weeks at two doses of 5.5mg, etc).
Christmas has landed right in the middle of my taper as I’m at 4 doses of 5.5, so I’ve just adjusted the days of the week I take the lower dose for this week only as we have 15 family members coming over for Boxing Day dinner (our tradition). I really doubt I’d make it through today without this adjustment. Back to the extended taper as usual next week.
It does seem that plenty of folks struggle at this dose of pred. On 6mg I’m totally fine, 5.5mg and I get the same symptoms as you (but they are slowly improving, lessening). As Kendra’s says, no one tells you about this stage of tapering at lower doses, and no sense in getting a cortisol test yet as we are at too high of a pred dose. Waiting and roughing it out seems daunting given how horrid the symptoms can be.
Thank you PMRCanada I will study your method , I definitely need to find a method of some sort. I do hope you get through your Boxing Day dinner, it sounds daunting to me , I only had four of us yesterday and feel awful today. Good luck and a happy new year when it arrives. 🌺
I've been of prednisone for 1 yr as of January. I know exactly how your feeling to the point I wrote my sister saying feel like I'm dieing .
Do the slowest and as small a tapper as possible. Use the Dead slow tapper and even add weeks. Pmr Canada is faster then dead slow.
If I was to do it again I would stay at each dose or just eg 4mg for an extended period of time. I stayed after each tapper for 1-4 months and not enough.
We are all different but your all sounding like me and in hind sight I'd have stayed at 4mg fir 6+ months to really let the adrenals kick in.
I found this the worst part of the journey on prednisone.
You all can hopefully do it but you've all been working hard don't rush.
Plan this stage to be exhausted, find a food that really wets your appetite because if you rush like me you will drop weight like crazy, not good. I was fortunate it was Christmas and I had lots of my favorite food which normally I'd gain excessive weight so I ate it daily for weeks and still lost.
Sorry for rambling but I feel for you all and just want to share my experience so you possibly have a better time.
One thing that PMR has taught me is patience, not something I was known for!! I now happily reduce by a quarter mg every two months, with occasional twinges in my calves when I am playing pickleball. I think the twinges are PMR’s way of saying “I’m not done with you yet!”
Hi Strelitzia….. your post has given me a bit of hope which I have to admit was wearing a bit thin. If you read my profile you’ll see I haven’t had the best treatment at the hands of the medic’s I’ve seen. I now feel trapped by my adrenals. I suspected that at my age a very small reduction may possibly be the answer so I’m going to argue my case to the medics and give it a try. Thank you so much. 😘🌹
Thank you DorsetLady, being so 'new' at all this is like unchartered ground.....he wanted me to stop Pred altogether but not preoared to do that I value the advice given ad its from experience and that soeaks volumes.How much do you think I should go to? I was aiming for 15 to 20mg.....just want to level out a bit, been a tough 6 months or so, very up and down. X
There is pretty much NO side effect of pred, short or long term, that is as threatening as uncontrolled GCA which puts you at risk of total and irreversible loss of vision. If you are currently at 40mg and that is leaving symptoms, then getting TO 5 or 10mg is a distant objective at present and the choice is whether you taper in steps of 5 or 10mg. Rush things and you can easily end up where you started and finding it even harder to reduce the dose.
Thank you PMRpro....I agree with your comments, I am on 50mg now still have symptoms, but its just 2 days, very fatigued my eyes sight is blurry but I also have Sjorgens syndrome which causes dry eyes, so makes things a bit confusing.....but not going to rush it, sound advice.
At the moment your aim should be to get the symptoms settled/stabilised which means most have gone, (they say 70 per cent) and if anything remains it is mild and not increasing. You're talking about "severe" symptoms and jaw pain which indicates a flare or rather GCA was never properly under control. (Presumably jaw is when you eat and stops when you're not.)
If you don't keep a symptom diary, it is a good thing to do in the early months particularly. Steroids can cause weird side effects at high doses and it's helpful to try and distinguish them from GCA/PMR. I think I'm right in saying they can make your eyes blurry - mine did anyway. Also they can mimic symptoms like aches and pains and head pressure.
Reducing 2.5 a fortnight may be a good idea.
After around 20mg the guidance is usually to reduce monthly and monthly tapers could be applied on higher doses to help things settle. Don't forget there is often a withdrawal period of a few days after tapering when you get withdrawal symptoms which can also mimic flares.
Try not to worry, this is just a stage and in time you will be on much lower doses and then none. X
Thank you so much Viveka for your reassurance, and thank all for the advice that has made me feel a bit more at ease, going to follow advice given and encouragement. X
I have sai from taking preds long term for uc. I've managed to get down to 8.5mg from 30mg 2 years ago.I've learnt when you are particularly active you should updose a little. 0.5-2.5mg is fine.
You can drop back to your normal dose if you haven't updosed for more than a few days . Won't hurt your taper.
I have to double dose if I get a fever or am on antibiotics which I was last month for a uti. But I dropped straight back down after a week and I was fine.
There’s a fine line between keeping challenging your adrenal axis by being a bit low and putting yourself at risk of adrenal crisis.
We say not to put yourself up to feel better on a regular basis to fit in with life when you have a choice, but if there is an unavoidable triggering situation, needs must. I avoided boosting my Pred to maintain a lifestyle but instead tried to adjust my life to make sure I didn’t keep needing a boost. Christmas is a bit different and it is short lived. Yes, it might be a good idea to avoid offering to feed upteen people for example, in the first place and popping a load of Pred to power through. It is a case of making sensible choices beforehand but it can be stressful for all sorts of reasons with the best of planning. To me, if 0.5mg keeps you upright take it for now but still try to tone things down and rest as much as possible.
What dose are you on?
Your symptoms however, do seem to contain some that don’t quite seem to fit adrenal insufficiency, such as catarrh and wheezing. Weight loss, which I am assuming isn’t over night, needs to be thought about just in case something else is at play. Have you been actually ill with a virus or something else at the same time perhaps?
Hi Snazzy, thanks for your reply. I’m on 5mg down from 15mg just over 2 years ago. The weight loss isn’t overnight, this has been creeping on for a couple of weeks. The catarrh has also been around for a few weeks, I don’t suffer from it normally so looked it up on line as a possible symptom. Apparently adrenal insufficiency can bring on allergies which I am subject to so concluded this was maybe a symptom.🌹
I had most of these symptoms tested for three months ago by three clinicians who failed to spot the adrenal insufficiency. All tests were negative including the cancer one so I turned to the forum when I suspected A I and after a 1mg extra Pred dose all symptoms vanished. However the catarrh is new since then so plan to attempt to have this investigated asap.
I very much agree with SnazzyD's comments. I think there may well be something else going on which needs investigating and dealing with. But if 1/2mg makes the difference - there is little harm in taking it for a few days. Longerterm though, your doctor might consider doing a synacthen test to decide if there is any real point in risking you beeing unwell - with the best will in the world, at 81 your adrenal glands may simply not be able to get back to the level of production they were pre-pred. Adrenal function does fall off as we age and that must be remembered,
Thank you PMRpro you’re view of the problem as always is welcome and straight to the point much as I had been thinking myself . I can’t deny that I’m getting on a bit, however I’m determined to try my best to puzzle this thing out with the help of the forum if not always the medics so I’ll soldier on for a while. 🌹🌺🥂
It isn't so much "getting on a bit" - your adrenals might have been fine if untouched but they aren't and now are being asked to get into training for a big event which might be a bit much or take a lot longer than for a 60 year old. Physiology does get kicked a bit with each birthday.
hi I have the same , your endocrinology team should have given you sick day rules. It’s more important to prevent a crisis than wakening your adrenals. A crisis can kill you. Taking extra for a stressful day is perfectly fine once in a while. Listen to your body. I’ve lived with this for 12 years and I’ve has crises over stress. So don’t feel guilty upping your pred. X
Thank you TM1970, I must admit I have felt rather guilty taking extra Pred and of course I don’t want to be dependent any longer than necessary. I plan to visit drs surgery asap to make sure all my symptoms are Adrenal related but an endocrinology team has never been mentioned. 🌹
Tapering at low levels of Predisone VERY CHALLENGING! I have done well getting down to about 7 mg but each taper after that has been challenging. 3.0 mg to 2.5 mg took me 3 months to feel "normal". I am doing the darn slow taper from 2.5 mg to 2.0 and again, it is very tough. Feeling more stiffness and pain as I assume my adrenals are sputtering to keep up. I do find that no matter how bad I feel, if I force myself to do my fitness class and yoga class or at least do some serious stretching - I feel better. Hang in there everyone and happy new year! Thanks for all the support!
My PMR symptoms got dramatically worse in the run up to Christmas and are still bad now; having to take more pred and more paracetamol. Can barely walk. Must be stress. Husband and children so look forward to Christmas but I don't - just a load of work and expectation. My GP still won't recognise that I have PMR and won't prescribe pred for me and I've nearly finished the pred I got in Cyprus so I've had to order some at great expense over the internet. I still haven't had a referral but have been told perhaps in March.
Perhaps if for the £250 fee they would confirm what I already know but what if they require more tests an x-rays: presumably that would bump the cost up even more. I now have an appointment with a different GP at my surgery so will see how that goes first. If they still won't make a diagnosis without making me wait months for a referral then I shall use my internet-supplied Pred since self-diagnosis and self-treatment seems to be the only way forward!
You should be able to get the results to show them - they are your tests, Depends on the rheumy - Rod Hughes for example makes clinical decisions - and relies far less on tests than other doctors.
confused, still learning how to do this. Had a flare up with extreme,deep cough and throwing up mucus, very stiff and blurred vision. Went up from 7 mg to 40mg for 3 days now. Can I go back down to 7 mg now?
You can certainly try… but 3 days is not long , and maybe 7mg is a tad optimistic - slightly higher initially… .. and why as high as 40mg? Blurred vision?
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