How do you go about getting a synacthen test? I have been well of late with symptoms that might suggest Adrenalin insufficiency. I have been on 3 mg of steroids for several years and constantly struggle to get any lower. I have had an enormous amount of stress too recently so I wonder if my adrenals aren’t producing sufficient cortisol. Do I go via my rheumatologist or via the doctor?
I have never found my rheumatologist helpful. I have had so little help or support from him. He tells me nothing on my yearly appointment. I have understood far more by using this website. I’m wondering whether I should ask to see a different rheumatologist?
Any thoughts on both?
Thanks
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JudithWarrior
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My Rheumy wasn’t interested either but my GP was an booked it but it was me that suggested it. After a result that wasn’t very special at 4mg the Endocrinologist took over and I had it repeated at 1mg and it was fine. They didn’t discharge me for some months after that.
Protocol would suggest that your Rheumatologist should refer you for a Synacthen Test. They are in charge of your case and medications. You could ask your GP to refer you to an Endocrinologist, as another specialist in your case, at the same time as discussing the prospect of a different, more engaged Rheumatologist. I am sorry that you are experiencing a time of enormous stress. I hope it can resolve soon, I am sure that it makes everything feel worse.
I think it depends on the local set-up - it may be that a GP can request a synacthen test and if if turns out to be appropriate, refer you to an endocrinologist. However, the GP can definitely request a baseline cortisol test next time he is doing bloods - just requires you not to have taken pred in the previous 24 hours and have blood taken at 9am. That would be a good start.
My adrenals responded to the stimulus, but not quite as robustly as they should - unsurprisingly, as the baseline cortisol had been a bit low, but not at crisis levels. I was on 3mg pred at the time, so nothing needed to be done but wait until my dose was lowered. However, 2 months later, when I was down to 1mg, my symptoms of GCA-LVV increased, so my Rheumatologist increased the pred to 5mg, which is where I've been for the past 6 months. (I'm also on Tocilizumab!) When I speak to her in 2 months' time, I expect we might decide to start the pred taper again and see what happens. Covid has slowed things down, I feel, but better than rushing to reduce and having to go up again.
So my adrenals have been given a bit of a respite while I'm on 5mg and they'll have to readjust to the lower doses of pred when the time comes! 🤞
Good luck with your 'struggle' - it does sound as if you could do with a more attentive Rheumatologist. Where are you in the UK - others may be able to help?
PS I read Kate Gilbert's book in the early days (2016), but stick with this forum - I've learnt a huge amount from it. Have you joined the charity? You'll receive 3 newsletters a year and they also have a network of Support Groups around the country. I helped set up the Yorkshire group in 2017. pmrgca.org.uk
Thanks for all of this info. What's Tocilizumab and why did they give you that? I hear all kinds of stuff and treatments others are getting but I only get to see my rheumy once a year and he just cracks jokes and says keep going. Maybe my expectations are high but he hasn't really told me anything that's been that helpful or attentive. I feel like I'd like more help as I've been stuck on 3mg for about 3 plus years now. The last year has been a hell of a year with huge amounts of stress but I've decided not to taper until I have things sorted with my elderly parents - either residential care or live in carer - we're getting closer to a decision so I'm hoping some of the pressure will come off me and I can take a step back from all the care I've been giving. To be honest I've really had no time to focus fully on my health and haven't made it a priority choosing to largely ignore it so I think I need to change my mindset and give myself some care once I have sorted stuff out. Of course lockdown hasn't helped - none of us have had holidays or breaks either. Sounds like you're doing amazing! Hope you get completely well.
If you need 3mg that is what you need and all the help in the world won't change that if it is adrenal reluctance. Tocilizumab is a biologic - and in the UK has only limited approval for one year in difficult to treat GCA. At 3mg, I wouldn't be willing to take any of the so-called steroid sparers because the potential side effects are far more than any associated with 3mg pred. Prof Dasgupta often keeps patients on 2-3mg long term as he says it reduces the incidence of relapses - PMR isn't always a short-term illness, the median duration of pred management is just under 6 years and 4 to 5 years is very common. Half of patients are off pred in 6 years - but some 40% of patients still need a low dose of pred at 10 years.
One of the biggest tasks we have had on the forum is comforting the patients who were told they would be off pred in 1-2 years and come here disappointed and disillusioned because their doctor is basically making them feel they have failed.
Thank you. I can identify with that sense of failure - I guess I feel somewhere deep inside that it's my fault and weakness that I am still not free of this disease. My hubby is utterly wonderful and super supportive but he does have such a positive mindset and isn't good at dealing with any illness and so he always tries to explain away my pain and say it's just the cold or the damp or that he has similar pains etc. That doesn't help as I end up feeling that it's my fault that I can't get free of the disease. ( I guess he struggles to accept that I have this and that it is a long term thing that might never leave me.) Also, I have watched my mother take steroids for PMR for many years of her life and now at 92 the osteoporosis has really set in and she has a chronic problem with reflux which I believe has been caused by the alendronic acid she's taken. It's hard staring it in the face knowing that my future may well be similar. My PMR started 10 years before hers so it fills me with dread about the future. I guess all in all I still desperately hope that one day I will be able to do without steroids. Perhaps I should lower my expectations and accept that if one day I do it will be a bonus.
"Perhaps I should lower my expectations and accept that if one day I do it will be a bonus."
Many of us believe that acceptance is the key to living well with PMR - and it is possible. Setting realistic goals is part and parcel of that and to be at 3mg for any length of time is really a good start. I have had PMR for16 years now have been on pred for nearly 12 years. Maybe I'm lucky that I have no decrease in bone density despite never having taken bisphosphonates and no gastric problems. I have got down to 5mg a couple of times but had major flares after a time which required returns to 15mg. My husband has been ill for a couple of years, I had a pacemaker implanted 2 years ago and that plus the ramifications of Covid have kept me at 15mg for most of the last 2 years. I can get a bit lower but after a few weeks at 13mg I can't function and that simply isn't an option. It is what it is.
Thanks for sharing. Yes I guess acceptance is the key and yes I know actually that I am blessed to be on a low dose. But I do know that I have bone density issues that are heading towards osteoporosis. Maybe that's what I should be focusing on to stay healthy in that area and do my best to counteract the impact long term.
Have you not been offered anything because of the risk of osteoporosis? There are option that don't cause gastric problems. Have you had a dexascan - are things as bad as you think?
Only Alendronic acid which I am scared to take. Yes I've had 2 dexa scans and have deteriorating osteopenia. My next scan will be Jan 2022. I've done some reading and taken the advice of some people on this website by getting good supplements to help my bones and I work hard with my diet too to stay healthy - limiting alcohol intake and all those things. I walk a lot and have tried trampolining with a mini trampoline to help resistance to help bone strengthening etc but everything has gone out the window of late with the care of my parents and lurching from one crisis to another. I know there is the possibility of an infusion of the acid. Is there anything else around? When I have more time, I may well go and pay to see a bone specialist to see what they would recommend . Any advice welcome
What I am saying is that there are alternatives to AA - risendronate is a tablet that is better tolerated by the stomach. Then there is zolendronate which is an annual infusion. Prolia is more expensive and less often used in the UK I think, it's a 6 monthly injection.Contact the ROS Helpline, they will talk you through it all.
Brilliant thank you - I will contact the rheumy to see if I can discuss but will take up the suggestion to first talk to ROS. Thanks for all this help! It's brilliant and much appreciated.
If, despite doing everything you can, you are finding the bone density is still deteriorating, have you been checked for "secondary causes of osteoporosis" which includes a raft of possible issues beyond taking pred. For example, one which is very commonly mentioned on the Bone Health forums is hyperparathyroidism (nothing to do with the thyroid).
PMRpro has replied re TCZ - it helps to suppress the inflammation in GCA, so nothing that you need, thank goodness!
You have my sympathy regarding the issues of care for your parents. I was in the same situation 15 years ago, but will always be comforted by knowing that I did my best for them in their final years - both lived into their 90s! 💞
Ok I will try that but if I do get referred for a syncathen test - what happens once they've done this? I have no idea about the process thereafter?I've been having symptoms for the last 2 - 3 weeks of adrenal exhaustion - spoke to doctors today to ask for a test and she suggested I needed to get out and garden !!!!!!! I think it was because I told her that my life had been extraordinarily stressful caring for 2 elderly parents in the last year! But she agreed as a first step to give me a blood test to first check Vitamin B and thyroid - know it's going to be a battle to get help. It's taken me nearly 2 weeks to get an appointment and I've had to beg for an emergency appointment. It's just crazy right now !
It depends what the results show. As long as you are on some pred the results can be quite equivocal. All the test shows is whether your adrenal glands are capable of producing cortisol when stimulated. If they are, then you have to be patient and see if the whole set-up which involves multiple organs and glands (the HPA axis, hypothalamus, pituitary, adrenal axis) slowly returns to normal function - it is like a car, it takes a lot more than a full fuel tank or battery for it to be able to run properly. That isn't a speedy process and can take months. Even once you are entirely off pred it is thought to take up to a year to settle down.
Medically speaking, there is no such thing as adrenal exhaustion - there is adrenal insufficiency but that just means the adrenal glands aren't fully functioning and there is more than reason for that. If your synacthen test shows inadequate function they may offer you what is called a rescue pack - hydrocortisone injections to keep at home in case you suffer an adrenal crisis if unexpectedly exposed to severe stress - emotional, physical or illness. Normally your body would produce cortisol in response to let your body cope with it better - if it can't, you need a supplementary source.
The only way to stimulate the HPA axis to produce cortisol is for the body not to have enough available to it in the form of pred - low dose pred and time. Nothing else does it, no supplements, nothing sold on the internet so don't be tempted to believe dodgy claims about even dodgier substances.
Thank you so much - I didn't really know any of this. The only book I read was when I was first diagnosed nearly 5 yrs ago - by the doctor - Gilbert I think her name was. Are there any other good sources you'd recommend me reading - or is keeping more in touch with the website the best course of action?
You mean Kate Gilbert's book about surviving PMR? She isn't a medical doctor so I don't think she really went into that side of things. And when she wrote it, it wasn't as clear what problems can arise as you taper off pred. She didn't have a problem herself as far as I know,
Personally I think the forum is as good as source of info as any - we have all lived it and have a lot of experience between us. Much of the other stuff is theoretical - and often not up-to-date.
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