Hi, I have been suffering from, firstly polymyalgia, and then GCA for nearly 12 years now. I have recently been told that I have been on prednisolone for more years than was necessary and that I should slowly withdraw from prednisolone which I have been doing. I have reached 6 mgs, from around 13mgs, I now appear to have hit a wall. I get very tired, have neck / shoulder pains , some stomach pains and feel sick etc. this is after 4 weeks of staying at 6mgs. I am now told my adrenal glands might never work again and I might just have to sit at 7 to 8 mgs for the rest of my life.
Does anyone else have experience about adrenal glands and whether they may or may not work again after such a long period of them not energizing.
Thank you!
Ian
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Stkeyna
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Well, they might not but I can’t see how they’ve been given a chance. It’s worth a crack isn’t it but in my personal experience it takes a lot longer than seems reasonable. The trouble with doses under 10mg and over 5mg (depending on the person) it can be not enough Pred to see your daily needs for function but still too much for the adrenal axis to think about working. On a steroid type potency ladder Pred is more potent than natural cortisol so I suspect that is why it needs to be quite a bit lower than the natural 8mg per day cortisol output. I felt awful down to 5mg, below which I felt like my body suddenly noticed it needed to make up a shortfall. I had a Synacthen test done at 4mg (the maximum dose they would do it at) which showed ok but nothing special. The Endocrinologists decided that was a green flag to jump down fairly quickly. It was at this point I said no thank you, I will go at the pace my body sets because I had a life to live. They weren’t happy but had no choice because they couldn’t exactly stop prescribing it.
I don’t know if you introduced each new dose gradually or whether you dropped by 1mg in one go. If it was the latter I’m not surprised you felt foul. I did 0.5mg every 6-8 weeks and brought it in over that time increasing the number of new dose days in the week slowly. That was quite enough and I still felt ropey but could function. I dealt with that by paring back on my life and resting, like a solid sleep in the afternoons again. Under 3mg by drops were 0.5mg every 10-14 weeks and my last 1mg took a year or so.
Thanks for your response. You make some very interesting points that most consultants don't! I just wonder how much they actually know and I think in some cases - very little. Anyway I have taken a mental note of some of your points which I am sure will help. An endocrinologist has never been mentioned to me. I suppose it was worth it all! Thanks again!!
Depending on your GP (and mine is excellent) I think we are better off in their hands rather than going the specialist route. The GP plus this site is all the support I need.
Glad that system is working for you but the trick is finding a caring, knowledgeable doctor in the first place. I did have an excellent GP many years ago and was constantly amazed at how much he knew but they are rare creatures and if you find one try and hang on to them!! I suppose the same applies to consultants!
Just read this thank you I have been coming down 1 mgevery 2 weeks I’m down to 1 mg and feel awful I noticed I was getting worse when I got to 3-5mg with head pain being unbearable.
Hi there. No experience myself, but a friend took them for over 12 years for PMR - and she is absolutely fine. Don’t lose hope! Have you tried slowly reducing .5mg at a time?
I do know of someone who got of pred after 11 years - don't know how long he had been below 5mg though when he succeeded. And DadCue on here has said he did manage to get off pred once he was on Actemra and he had been on pred on and off for many years.
But it will take quite a long time - probably years not months and you will have to be pretty patient. Getting to 5mg will be the first hurdle - that is low enough to poke the adrenal glands to wake up and then they could try a synacthen test to see if they CAN produce cortisol. Whether they do or not remains to be seen - it is a very complex multi-factorial process.
And on what grounds can they say you have been on pred longer than was necessary? How do they know?
Thanks for the response. Looks like it is possible but at what cost. Dealing with post-op problems from Prostate cancer as well.
Anyway to answer your observant question - the story so far:
Well I was down to around 4mgs about 6 years ago while in France 10 weeks. However had a flare or whatever and I saw a very inexperienced consultant, on my return to the UK, who suggested I have a pet scan and told me to come off my pred which then caused a big flare up. When I received my scan result from the consultant it didn't really say anything positive. I remembering read 'raised' so presumed things were not good! I told the consultant I was getting bad headaches and I was put up to 15mgs and then on up to 25 mgs when I started getting temple pain.
Now all my consultants and doctors have always stated when you get temple headaches just go up on pred. as you can go blind!! That phrase had always stuck in my mind from very early days.
So then I moved house/moved consultant to a very experienced consultant and I have been with him for nearly five years and presumed he would have looked at the previous scan I mentioned. Anyway at some point last year I asked this consultant what he thought about that previous scan because I kept saying my symptoms appear more prednisolone based than giant cell. So during the consultation, he spun round and started looking up the details of the scan and it coldly dawned on me that he had never previously looked at the scan. He then told me he was denied access and admitted he had not read the scan. I found out later it was very easy to request that scan details.
Anyway he then ordered a new Pet scan which showed tiny amounts of inflammation and really that I wasn't suffering from giant cell even though I was still having temple headaches. I then paid the money and spoke to 'the' top consultant who immediately told me that my temple headaches were coming from cranial pressure to the brain caused by prednisolone!! And that I was immediately to start reducing the prednisolone!! No consultant had ever mentioned this to me previously when I had queried the point about it being the pred that was causing the problems! Just to clarify that in 12 years I had three pet scans. The first ten years ago which showed high levels of inflammation and two further scans which showed hardly anything so at a rough guess, and my thinking, I could have been off pred. about 5 years ago! I can't be the only person this has happened to!! I do feel annoyed at myself and the consultants!
Sorry firing this off rapidly so hopefully, it makes sense!
If you were on pred for the subsequent PET scans then that will have suppressed the results. 10mg is said to be enough to interfere considerably. As I understand it, PET-CT scans are good for identifying PMR and LVV but less good for cranial GCA because the brain takes up a lot of the tracer and that can swamp everything in that area. The only test for there being nothing going on is being able to reduce the pred dose to zero and no symptoms returning. It is tricky but with a slow taper in small steps it can be achieved - but too many doctors don't understand how to go about it, many try too big steps and that often results in steroid withdrawal symptoms which they confuse with a flare of symptoms and tell the patient to go back to the previous dose - or, even worse, to a much higher dose.
Thanks and always you make good points. I was off the pred for first two scans but my very experienced present consultant, who didn't read the scan, had me stay on the pred. when I had my last scan. I was very aware of the pred. at the time as I was around the 10mg figure. I actually phoned up the senior radiographer who said it wouldn't make that much difference!!!!!! What was I to say with both consultant and radiographer telling me it would make very little difference.
I know - same happened to me! But it will very much depend on the level of the inflammation that is present and I'm sure that varies a lot. I don;t know what the answer is ...
Having read before that GP’s opinions as to when to have a synacthen test vary between 5 and 3mg I asked if I could have one when I reached 4mg. He told me he had never heard of anyone ever having a test until they were off Pred completely so the answer was no.
Likes to put his patients at risk does he? Was that the GP? I'd try to find one with better background knowledge. If you have poor adrenal function with no reserves you are already at risk of an adrenal crisis at 5mg - and frankly, given how long it takes to get down the last 5mg, I'd rather know if my adrenal glands can respond in an emergency sooner rather than later!
It is endocrinologists who say 5/3mg doses - and since they are supposed to be the experts in the field a mere GP should be listening to them. Leeds has recently done some work that has found poor adrenal function is far more common than they thought in patients on long term pred. One lady on this forum felt fine at 2mg but a synacthen test showed she had no reserves at all.
Yes it was a GP in the practice and an experienced one at that. . Not the one I trust that recognised PMR straight away but I can no longer request to speak to a specific GP. It’s pot luck who rings you back. Thank you for the information, I have copied it and I shall quote relevant parts of it next time I speak to someone at the practice.
Many thanks for your interesting response. Can I ask were you given the Actemra (Tocilizumab) just to get you off prednisolone or to help treat PMR. I ask as the consultants in the UK are limited, I believe due to costs, in whom they treat with the drug?
Anyway an endocrinologist has never been mentioned to me..... so far. Well done for getting through it!! Kind regards, Ian
I had synachten test recently and been told that my adrenal function is not likely to return! Theres nothing there. I have been on pred for less than five years. On 5mg now. I dont know if that will be it, not happy about it. Wouldnt mind if i felt decent but i feel rotten.
Thanks for the response! It would appear from the replies I have had it is possible to get down. I have been on 6mg for just over a month, my last two days have been better. So I am going to try staying at 6mgs if I can. Maybe you can try sticking at 5mg. I know easier said than done!! Good luck!
Thanks again for your reply. The problem is that the consultant doesn't think I suffer from giant cell any more just pred withdrawal so I would not be given Actemra as they would say others are more deserving! So up to me to either battle on or settle at 7.5 mg for the rest of my life!! I am going to try and stick at 6mg for a bit longer and see how it goes. All the best.
I don’t think even the experts really know. I have been on steroids for nearly five years having been diagnosed for GCA. I have been stuck on 6.5mg pred for over a year & found that trying to reduce by 0.5mg even using the very slow method has been impossible - my blood results are always fine - but I still feel unwell, fatigued & basically still am only able to do very little, if I do even a little more pay the price the next day. My rheumatologist says it is very difficult to differentiate between adrenal insufficiency & GCA still lingering on in ones system. I was referred to a leading Endocrinologist whose speciality is Adrenals, he did the test on the adrenals to see whether there was any life in them but results showed zero. He said, although many medics wouldn’t test until patients were down to 5mg he did not agree with that. He felt it was worth trying me on hydrocortisone with the programme of after a month of slowly reducing the pred, as hydrocortisone mimics the work of the adrenal gland rather than pred. But, unfortunately I felt more & more unwell on the hydrocortisone after two months he decided I should stop taking it. The conclusion being that it was still the GCA that was causing my symptoms & not adrenal insufficiency.He was not optimistic re the adrenals working again, but we agreed to have another test when, if I ever, manage to reduce to 5mg.
Sorry rather a long answer, but reading the other replies from members, it is obvious that everyone has different experiences so don’t give up hope & keep asking questions, no one answer fits all.
Thank you very much for your response. It is most appreciated! Yes it is very hard dealing with this awful illness, and a remedy that seems almost as bad - once it gets hold of you!! And yes we are all individuals (patients and doctors) - I am also sure that stress plays its part in all of this. Some dealing with stress better than others. I have had a stressful live with losing children and now prostate cancer plus all the shenanigans that go with giant cell etc. so I am sure it adds to the pot! We make our decisions and then deal with it. I like you have had good blood levels for most of the time I have been ill - which is good and bad in its own way as with the latter there are no clues to follow. I suppose your last scan was clear or nearly clear of GCA as mine has been. Anyway good luck with it and I would be interested to hear how you get on!Kind regards, Ian
I had adrenal problems when I came off steroids 3 years ago, I have since had to go back on them. My adrenal glands were sluggish but did start to work again with the help of hydrocortisone. After 3 months the cortisol level was still low, at around 150 compared to normal but it showed they were working again. You really need to be referred to an endocrinologist for tests and their expertise.
Thanks and I read your experience with interest. The role of an endocrinologist seems to be important so hoping if I can get any lower I will be referred. Good luck!
From what I am learning, and from what you have said, then I totally agree. I hate taking pred. but I, like you, have had 12 years of illness and not many full days that haven't been spoilt by tiredness, headache feeling unwell etc. I'm stuck on 6mg - unlikely to get Actemra - and I can't get much quality of life. My consultant tells me just to except the situation and go back to 7.5mg and have a better standard of life! Tough decision.
For me it is a no brainer - and my doctors agree. If you can't get below 6mg because of the PMR then adrenal function will not return either. So taking the best result you can makes sense.
Thanks and that makes sense. The trouble is I was told I was only suffering from adrenal deficiency and there was no mention of PMR returning. I am beginning to think, due to neck and shoulder pain, that it is PMR and perhaps it never really went away in the first place! Anyway, I am now being asked, when vaccinated, to travel over to my consultant's hospital to have an ultrasound test presumably on my arteries etc. Do you feel this would be worthwhile? It has never been mentioned to me before. I, once again, appreciate your help with this!
Sorry to trouble you again but I would like to ask one more thing. How would differentiate between adrenal difficulties due to pred withdrawal and PMR . The neck and shoulder pain I have is the same as when I started with PMR all of 12 years ago?
I am also still stunned at the fact that temple pain headaches may not always be linked to GCA and can be cranial pressure on the brain caused by Pred. None of my consultants ever mentioned this possibility..... as I would think they didn't know. I just wonder how many other people out there might have been given the wrong diagnosis. It is a pretty important factor to be aware of!
Don't know. The very slow tapers are aimed at reducing the likelhood of steroid withdrawal rheumatism for that reason. Most people talk about the fatigue of laggard adrenal function, plus dizziness, low BP and so on. PMR would worsen while remaining on the same dose - you would imagine that symptoms due to poor adrenal function would be stable or - if you are lucky - improve over time. That places an emphasis on not rushing down the doses.
absolutely ...I am down to 5 mg, and have been told probably 5 mg. for life. It's not so bad so don't fight it. If that's what it takes, 5 or 6 mg. for life, abide by the doctors. Definitely I do not feel as good as I did on the higher doses but I also have MGUS and those numbers are increasing and the hematologist told me the prednisone might have been keeping light chain disease at bay. I see a rheumatologist, hematologist and endocrinologist ...so I think between them, I'm good to go. At 78 I have more energy than most people and try to ignore the symptoms and go with the flow each day. Determination and belief in a "higher power" [at least for me] carry the day. Don't despair. There are worse things in this old world to deal with than being on 5 mg. of prednisone daily.
Nothing has ever been stable for me with this illness. If on high doses of pred 60/70mg I would be very dizzy and light-headed and I can think of very few days, no matter what amount I was on, that I would have a full day of health! My problem is not really the symptoms it is what the symptoms mean i.e. I have been told am suffering from Pred withdrawal but I now think it might be PMR returning and does that mean unless I go up GCA might return?! Anyway thanks again for the advice and I will get to 'somewhere' in the end!
Very interesting that you say you feel you have lost 12 years of your life as that is exactly how I feel. I have always kept fit and was playing tennis and squash etc when that all stumbled to a stop - at 57 years of age. This was all a very important part of my life as I am a great believer in that you need to keep moving physically and mentally. It obviously had its social benefits as well!
So it is very tough and it is easy to bemoan the situation but....we have to look forward and keep busy. Trying to chase the whatifs away is a daily challenge especially in these torrid, covid times. However, it is trying to set positive targets which my partner and I are trying to do this year. We are booked to travel/cruise over to the USA from the UK, on the Mary 2, in August ...but not looking that certain at the moment!!!! I am also lucky my partner supports me - but she must be pulling her hair out at times. I also keep busy in emailing friends around the world. So spend quite a bit of time writing on my computer and then wondering where the day has gone.
I am also dealing with post-op problems from prostate cancer now as well. I just seem to be reeling from one issue to the next. BUT, as I say, I try to just keep as busy and as positive in a manner as I can - yes not always easy focussing on the good things in your life. Easy to say but it is important to plant those positive images into your head space as if playing a mental game with your brain and personality.
As I write I look out and a grey, shivering sky stares and glares gloomily back at me which doesn't help. I think I am bluer with cold than blue in mood! But hey-ho and on we go!
Okay thanks. Vaccination is going well here but we need two vaccinations and three months between 1st and 2nd. We need to pay the balance in April so we will probably lose our deposit unless Cunard cancels the cruise which they haven't as yet! Well, let's us hope we are both cruising in 2022. Seems nuts but that's the world we live in at the moment!
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