Can Adrenal Glands Work Again After 12 years? - PMRGCAuk

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Can Adrenal Glands Work Again After 12 years?

Stkeyna
Stkeyna

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

53 Replies

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.

Stkeyna
Stkeyna in reply to SnazzyD

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!!

SnazzyD
SnazzyD in reply to Stkeyna

Just want to say that I didn’t see an endocrinologist until I was around 4mg. My GP referred me rather than the rheumatologist who didn’t mention it.

Stkeyna
Stkeyna in reply to SnazzyD

Once again interesting! A bit scary that GP's are offering better advice than the specialist!! Thanks

Louisa1840
Louisa1840 in reply to Stkeyna

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.

Stkeyna
Stkeyna in reply to Louisa1840

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!

Tamtan2
Tamtan2 in reply to Stkeyna

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.

Stkeyna
Stkeyna in reply to Tamtan2

Thanks and well done on getting so far down!! Good luck it is tough!!!

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?

Good luck. X

Stkeyna
Stkeyna in reply to Songbird69

Thank you! Much appreciated and yes I have been dropping by .5mg but perhaps it takes that bit longer!

PMRpro
PMRproAmbassador

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?

Stkeyna
Stkeyna in reply to PMRpro

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!

PMRpro
PMRproAmbassador in reply to Stkeyna

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.

Stkeyna
Stkeyna in reply to PMRpro

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.

PMRpro
PMRproAmbassador in reply to Stkeyna

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 ...

Bridge31
Bridge31 in reply to PMRpro

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.

PMRpro
PMRproAmbassador in reply to Bridge31

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.

Bridge31
Bridge31 in reply to PMRpro

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.

It is hard to predict. I was in the exact situation two years ago after taking prednisone for 12 years for PMR. My average daily dose during those 12 years was conservatively 20 mg. I did manage to maintain the 10-15 mg range for the last two years. I had given up hope that I would ever get off prednisone.

Some doctors I spoke with said that there was little chance that my adrenals would recover and some said there was no chance. There were other doctors that were more optimistic.

I got some assistance from Actemra (Tocilizumab) and was able to rapidly decrease my prednisone dose. An endocrinologist was consulted and at the first visit she said it would be impossible for my adrenals to recover so quickly. My cortisol level was rather low at the time. She wanted me to be able to maintain a prednisone dose of 3 mg for at least 3 months. When I was able to do this, I had a follow-up visit. I had no difficulty holding my dose for 48 hours for another a.m. cortisol level. This time my cortisol level was "adequate" and I was told to discontinue prednisone. I was prescribed hydrocortisone just in case I needed it.

This all happened in 2019 and it was a rough year because of fatigue. There was some pain involved but it was tolerable. I remember a feeling of being liberated.

Now, my endocrinologist isn't too concerned about my adrenals because I have been off prednisone for most of 2020. My endocrinologist is now focused on reversing what is called metabolic syndrome that resulted from long term prednisone use. I still say that I'm in the process of a slow recovery.

mayoclinic.org/diseases-con...

Stkeyna
Stkeyna in reply to DadCue

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

DadCue
DadCue in reply to Stkeyna

I think Actemra was offered to treat PMR and to "decrease" my prednisone dose. I had the same rheumatologist for 10 years but there was never any mention of a biologic. When I retired at age 62, I changed health care systems and saw a new rheumatologist. It wasn't a big change because the new rheumatologist was a colleague and he had access to all my medical records.

The new rheumatologist made some interesting comments at the time of our first meeting. He said I was "too young to take prednisone for the rest of my life." He also said that he wouldn't care if I was only taking 3 mg but he thought 10 mg was too much.

I knew absolutely nothing about Actemra when it was offered. I was asked if I would be willing to try Actemra IF it was approved. I was surprised when Actemra was approved by a medical panel. I had doubts that Actemra would work because the advice on this forum wasn't very encouraging.

My rheumatologist and I were both surprised how well it worked for me. An endocrinologist was consulted because my adrenal function was marginal at first. I was told to stay on 3 mg for a few months. My next cortisol level was "adequate'" but I think that surprised my endocrinologist. She said that I must have "resilient adrenal glands".

If you have been diagnosed with GCA, maybe you would qualify for Actemra. The more you can decrease your pred dose, I think it would give your adrenals a better chance of recovery.

Stkeyna
Stkeyna in reply to DadCue

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.

DadCue
DadCue in reply to Stkeyna

I think that is the long term prednisone trap people fall into. I had a prior history of inflammatory arthritis and uveitis for 20 years before PMR was diagnosed. The flares of uveitis were treated with a short term burst of prednisone. Starting doses were as high as 100 mg with a fast taper over 4-6 weeks. I did experience prednisone side effects but I can't say I ever had any difficulty tapering off. Nobody warned me about the effect prednisone was having on my adrenal glands.

Something changed when PMR was diagnosed. There was some confusion at first but I think PMR was the correct diagnosis. That was when I was told that I would be taking prednisone daily for at least a year.

I needed higher than the usual dose to keep the PMR pain under control so that was a problem at first. I had many PMR flares but then something strange started to happen. I started to have doubts that I still had PMR but I could not taper off prednisone. Whenever I got down to 15 mg, the "flares" were different than what I would call a PMR-like flare.

For a variety of reasons, I started to believe PMR and adrenal insufficiency were somehow tangled up together. I can't explain how or why Actemra worked but it did help me untangle PMR from adrenal insufficiency. In just 7 months, I was able to taper off prednisone after 12 very long years.

In my opinion, Actemra helped both PMR and adrenal insufficiency because I was able to maintain a low prednisone dose long enough to allow my adrenals to recover. That would have never happened at the doses of prednisone that I was stuck on.

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.

Stkeyna
Stkeyna in reply to powerwalk

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!

powerwalk
powerwalk in reply to Stkeyna

Yes true. Good luck too.

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.

Stkeyna
Stkeyna in reply to Sho-Sho

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

DadCue
DadCue in reply to Sho-Sho

"The conclusion being that it was still the GCA that was causing my symptoms & not adrenal insufficiency."

Medical problems always seem to be multi-factorial. Why can't the conclusion be GCA and adrenal insufficiency?

"Cortisol plays an important role in a number of things your body does. For example, it:

Manages how your body uses carbohydrates, fats, and proteins

Keeps inflammation down

Regulates your blood pressure

Increases your blood sugar (glucose)

Controls your sleep/wake cycle

Boosts energy so you can handle stress and restores balance afterward"

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

Tell me how a medication that shuts down the production of cortisol when taken long term is helpful in the long run. I understand the short term benefits. However, long term use is just asking for problems. Oral corticosteroids are not a good substitute for what the body produces naturally --- IMHO.

Stkeyna
Stkeyna in reply to DadCue

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.

PMRpro
PMRproAmbassador in reply to Stkeyna

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.

Stkeyna
Stkeyna in reply to PMRpro

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!

PMRpro
PMRproAmbassador in reply to Stkeyna

I'd want to know what they are looking for - what sort of u/s?

Stkeyna
Stkeyna in reply to PMRpro

The prof. just said he would test my arteries with ultrasound in his clinic! I presume he is checking for inflammation?

PMRpro
PMRproAmbassador in reply to Stkeyna

Seems fair ...

Stkeyna
Stkeyna in reply to PMRpro

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!

PMRpro
PMRproAmbassador in reply to Stkeyna

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.

Stkeyna
Stkeyna in reply to PMRpro

Thanks again!

DadCue
DadCue in reply to Stkeyna

There is nothing stable about the symptoms of adrenal insufficiency. It is characterized by good days and bad days. It can wax and wane minute by minute depending on the demands that are placed on your body. You won't notice it too much as long as you heed the caution not to overdo it and your pred dose is high enough to meet the demands. It is when your pred dose is lower that you begin to recognize the symptoms.

chicagohealthonline.com/may...

The symptoms roughly parallel the need for cortisol at any given time. The need is variable depending on stress levels, infections, amount of physical activity, etc. My main symptom was deathly fatigue. Pain was also noticeable and it can mimic a PMR flare.

One way I would measure my symptoms was by comparing the exact same activity that I routinely would do. For example -- mowing the grass. On a good day it would take me an hour to mow the grass. On a bad day it might take many hours because of the need for nap breaks. On a very bad day, I would get totally exhausted and would be unable to finish the task and need to stop and finish it the next day.

The adrenals don't recover in a steady uniform way if they recover at all. It is more like they sputter for awhile and then stop until they gradually kick in over a very long period of time.

Stkeyna
Stkeyna in reply to DadCue

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!

DadCue
DadCue in reply to Stkeyna

I was like that too. My health and well being was in steady decline and medically unstable during the twelve years after PMR was diagnosed. We are all different and we have our own personal set of difficulties. Mine involved underlying inflammatory arthritis which compounded PMR or vice versa --- I don't know. My ophthalmologist said Actemra isn't optimal for uveitis. My rheumatologist said he can't treat both PMR and inflammatory arthritis.

Even though I was off prednisone for most of 2020, I still needed to go back on high dose prednisone twice. I'm just glad that I seem to be returning to some semblance of my pre-PMR days. At least both times I restarted prednisone in 2020, I was able to taper off quickly in a month or two.

The biggest difficulty was feeling like I had suddenly aged and I was robbed of 12 years of my life. I don't think I will ever completely understand it. I did receive guidance from a person who suffered an adrenal crisis and she was able to explain it well. Actemra was a huge help too because I was able to separate PMR from the rest of it. I just try to stay optimistic which isn't easy sometimes.

Stkeyna
Stkeyna in reply to DadCue

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!

DadCue
DadCue in reply to Stkeyna

That's funny about the cruise. We had a cruise to the UK planned in April 2020 which didn't happen. We rescheduled to April 2021 and that isn't happening either. The cruise to the UK involved stops in 5 different countries which doesn't seem like a great idea anymore. Our next Trans Atlantic cruise is now April 2022. When we get to Europe all the stops will be in Spain.

We had an Alaskan cruise in August 2021 planned but that has already been cancelled by the cruise line. The ship we were supposed to be on will be staying in Singapore for the summer. The entire Alaskan cruise season seems unlikely.

Sorry, I wouldn't count on any cruises to or from the USA to happen in 2021. I think it probably depends on how vaccinations pan out.

Stkeyna
Stkeyna in reply to DadCue

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!

DadCue
DadCue in reply to Stkeyna

It is a tough decision! Don't give up though. Good luck and I wish you well.

Stkeyna
Stkeyna in reply to DadCue

Thanks and the same to you in wishing you well.

Don't lose touch with the fact that you are what you eat.A good starting point online for you could be

adrenalfatigue.org/adrenal-...

Stkeyna
Stkeyna in reply to sennetta

Thanks I will look at what you have sent. Much appreciated!

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.

Stkeyna
Stkeyna in reply to tangocharlie

Thanks for the advice. Much appreciated.

Stkeyna
Stkeyna in reply to tangocharlie

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!

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.

Stkeyna
Stkeyna in reply to composition

Yes I appreciate the advice and sentiments! Kind regards, Ian

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