I am feeling that I am suffering a bit from low cortisol levels and just wanted to offload a bit and it might offer insight to others. I am booked in for a Short Synathacen test tomorrow. Have been lowering my pred to try and make it is accurate as possible so reduced from 4.5mg to 4mg and now for the last few days to 3.5mg but will go back to 4mg once the test is done. I feel that my cortisol or adrenalin may be low because i feel incredibly lacking in motivation, enthusiasm for anything, no real appreciation for life, friends or family. I want to get rid of everything in my life but dont know where to start (and dont really want to anyway). I feel easily overwhelmed. This is not like me and i can only think it is this deficiency. I also feel as though everything is a threat. I am 67, normally youthful in mind but my perception at the moment is that life is closing down. It is partly an impact of physical limitation but lately i don't even want to do things like go to the beach (what's the point), on a gallery trip to London (to much effort and been there anyway), nice day out to a local town (can't eat cake and such like and dont need more stuff) and even things like gardening or dinner with friends or family sound like too much effort.
But i know it is all a figment of my imagination. I am too young to be giving up on the pleasures of life so i am hoping that the test will give some insight, and if not maybe it will lead to some endocrinologist intervention. Eventually. Till then i am just laughing at myself!
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marionofnorwich
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YOUR cortisol at present is low because you are on enough pred for the HPA (hypothalamic, pituitary, adrenal) axis to suppress the production of more corticosteroid in the form of cortisol since the body knows that too much steroid is bad for it. The only way to change that is to get to a lower dose of pred and for the HPA axis to start to produce more cortisol to top up the oral pred which is acting as a replacement therapy. We do talk about it all the time and how difficult it can be to get through this stage of low pred AND low cortisol. Snazzy has waxed lyrical about her experiences.
It isn't Addison's - it is secondary adrenal insufficiency, secondary to long term use of corticosteroids. There is nothing that can be done to change it other than remaining at a higher dose of oral corticosteroid, either as pred or as hydrocortisone. But as long as you are on either of those, your natural production of cortisol is unlikely to return and other than that there is no intervention that will change it.
Even if it were the PMR, being on tocilizumab or Kevzara to manage the PMR doesn't remove this stage. They make it possible to remain at a low enough dose of pred to stimulate return of cortisol production without PMR flaring up, but they don't do anything to increase cortisol production, nothing does. Even the best endo in the world hasn't a magic pill for that.
Thanks @PMRpro I know it is all part of the journey. I suppose the reason for the Synathacen test is to double-check that my adrenal glands are capable before reducing further, although I realise it is rare that they aren't so I am expecting that the test will show that they are OK, touch wood and then I can concentrate on reducing safely
It is a bit on the early side to expect a good outcome of the synacthen test - you may be lucky but it is likely to be what they describe as sub-optimal and some doctors immediately jump to the conclusion that will stay that way, They may also try to suggest you switch to hydrocortisone as would be their normal approach but if you do, that is likely to make management of the PMR symptoms more difficult - even with 3x daily dosing, the antiinflammatory effect isn't good enough for comfort, Both rheumies and endos seem to wear blinkers, only able to see their side of the argument and that really isn't all that helpful!
Yes, I must admit, I didn't push for the test but I suppose if it shows that the adrenals are basically capable it gives the go-ahead for further reduction, though I do feel that the PMR is still active in spite of normal inflammation markers - I realise that is a hazard too as they may assume that it is not PMR. But neck and across both shoulders, plus stiffness in lower back and upper thighs says PMR to me
I find massage and manual mobilisation of the trigger points good but it has to be someone who knows what they are doing and it will make you feel as if you are having a flare when the trigger points release their stored cytokines into the system - goes after a day or two once they are washed out though. In the short term - an 800mg flooding dose of ibuprofen and heat over the affected area usually helps.
Longer term - Pilates provides the sort of physio exercises that help. Obviously general exercise will help long term - but I find it very painful when the muscles are still in spasm.
Others with more knowledge who can advise you on your cortisol question will be along shortly, but I just wanted to say that your feelings at this time are completely understandable.
There probably isn't a single person on this forum who hasn't felt as you do at some point during their illness and there'll be many who are feeling just the same right now.
I'm currently on 3½mgs and I'm also in the middle of dealing with some new health issues that have emerged, possibly as a consequence of my adrenals struggling.
The tests and investigations seem to take forever and in the meantime, I'm still feeling unwell and in a state of limbo.
I'm 66yrs old next March and have felt a bit despondent at times too. My energy levels are incredibly low, my strength....well what strength!!.... is non-existent, and my current efforts to stay as well as possible definitely impact on my day to day life. I completely understand what you're saying.
I have tried to deal with it by accepting the transition that's taken place and adapting to it.
I eat a low carb (but not no carb) diet so this allows me to both maintain a healthy weight and still enjoy an occasional cake & cuppa with a friend if I so wish. I'm half a stone heavier than pre pred 4yrs ago but I'm maintaining a steady weight now and not currently gaining any.
I'm selective where I choose to go out....I Iook for places where I can sit for a short rest if required...so... my local park, several familiar short walks with benches en route, places where I can stop for a cuppa, etc.
For the time being, I avoid outings that involve a lot of travelling, walking, standing or general over-exertion. It won't be forever and I still have so much thst I can do.
Please understand that these feelings will pass but as I've found, you have to research & explore new avenues for achieving new goals. Life doesn't stop with PMR but it does change for a while.
Whether your current feelings are adrenal related or because you'd be feeling low anyway, things will improve so please try not to be too despondent.
Thanks Kendrew. I am ok at keeping my spirits up in spite of being nagged at by unnecessarily negative feelings. I am lucky to have good support. I guess the long term nature is worrying, especially on top of the impact of Covid which seems to have been part of a long term change in the way people behave, plus the march of digitisation, climate change, travel etc we are experiencing a lot of change to how we do everything. Luckily I am fine with technological advances but worry about what it is doing to our society - but our parents and grand parents would have worried about the influence of cars (they were right), TV, processed food, shopping and many of the things we were keen on. But I think it is a natural age thing (it wasn't like that in my day!) and my lovely grandgirls are growing up as happy as anything, thank goodness.
You are lucky with the weight thing though as I am three stone over with accumulated gain from two rounds of HRT and one of pred. I did lose half a stone as I reduced pred which helped a bit but the rest won't shift which means any cake or similar produces that 'well, it's your fault, you're doing it to yourself feeling' and not eating it results in a feeling of constant denial. In fact eating anything can get like that if not careful.
I have similarly adjusted my targets. Luckily I can cycle still (e-bike helps) but feel limited by lack of walking. But as you say, still lots I can do and I am still working albeit from home. Hope that by sharing we can help each other
Sorry to hear you are feeling as you are, but [and I know it’s no consolation at the moment] many go through the same feelings - and the only way is to accept it is a temporary phase and you will come out the other end.
A very slow taper regime, tiny steps down, plenty of rest and TLC [self administered if necessary] and patience will get you through- as PMRpro has said, like many things in life, there is no magic option.
Thanks DorsetLady (my husband is a Dorset man by the way). I think it is as much all the other compensatory effort that also rankles. Constantly trying to lose weight, do more exercise, ignore carbs, feel bad about drinking alcohol (not that I drink much) or eating pretty much anything these days other than green veg and fish (which thankfully I like). A life of constant denial rather than constant pleasure - which is what I much prefer! Being a bit of a drama queen but you probably know what I mean
Yes, thanks to all. I think that is really what I am saying. I know that it is a case of waiting for it all to level out, which hopefully it will eventually. It is hard to unravel what is natural ageing (though I am of the use it or lose it mindset) and what is basically a figment generated by a false state of alarm. I am generally a very resilient person.
I do have slightly lower physical energy but that is not the main problem, it is more a state of mind which feels defensive as though I am under threat from all sides. I am guessing is linked to the fight or flight of adrenalin and the stress-balancing effects of cortisol. I am not trying to rush it, just slightly fascinated about how a hormone changes a whole personality. But I have been feeling that some kind of hormone imbalance since menopause has affected me which has provoked weight gain which has never reversed, including a stone and a half when I started on steroids. I did drop half a stone since I started, but I had one bout of HRT when I was 55 (also a time of high stress and depression which was cured overnight by HRT - the depression not the stress) and I gained a stone then. I came off after a year or so (once the stress through redundancy and work issues had passed), for a year but then the dark thoughts and a weird feeling in my midriff/sternum which is immediately cured by HRT got unbearable so I went back on. Again it all disappeared with HRT but another stone appeared. Eventually I reduced the HRT with only occasional doses when needed, maybe a tablet or two a month at most but still the weird feeling (can't describe it - a bit like nausea but definitely not stomach), maybe like the start of a hot flush. Anyway, it is just a hunch I have that there is some funny hormonal thing going on that predates the PMR. I do follow a generally low-carb, non-processed wholefood diet (though I do drink alcohol) but it doesn't seem to make any difference. I have just been trying fasting for the last two weeks 16:8 with sensible eating in 8 hours (and no desserts, cakes, biscuits, chocolate or anything) but no weight lost. Before Christmas, three months on Noom with no treats. I know all the theory of weight-loss but it seems not to apply to me! Anyway, just bumping along with the joys of our hidden body systems. Hormones and the immune system are a real mystery. As my rheumatologist says, 'a dark art'
Yes the feeling of being under threat is certainly related to adrenals spluttering -and it’s not as easy to “shake off” which we sometimes think it should be.
That’s why the TLC is important -but even that seems too much hassle at times😊 … it will go!
Not sure if “wax lyrical” is a euphemism for boring everyone to tears now 🙂!
I would have described your feelings the same way during my low adrenal phase. It can be grim and the trouble is one expects it to be gone sooner than it does so one switches about between thinking life is over for ever, to wanting someone to fix it or thinking there is some other ominous cause. Usually there is help from the medics either. Mine went on for months because my adrenal function was slow to return. As PMRPro says, the only way to trigger the adrenal axis is by being low.
To produce cortisol there are different links in the chain from the brain registering the lack, to telling the pituitary to shout with ACTH to the adrenal glands to work. The Synacthen test simulates the pituitary shout so doesn’t give information as to whether messages get to the pituitary in the first place. If the other parts of the chain are still slow, adrenals can be ready all they like but the memo never arrives. However, it’s a start and will tell you if the adrenal glands are capable of working. A ok result won’t tell you is if your adrenal axis will be reliably functional all the time and in an emergency when a big payload of cortisol is needed. I’ve been caught out a few times by being ok on a normal day but unable to cope when the has been an extraordinary demand. Equally a poor result doesn’t necessarily tell you that that is it for the future. The docs have to achieve a balancing act between you waiting for the magic to happen by being low and falling into an adrenal crisis. Sometimes people need help with a shorter acting corticosteroid as cover, but I don’t know how much this slows down the process overall.
Given how long it can take for the adrenal axis to get back to working order, it may be that even with your reducing the dose, it may still be a bit early for that to have had a significant effect yet. Time will tell. Your recent 4.5-4mg may still be having a suppressive affect. At 4mg my Synacthen test was not very special and the Endocrinologist was not surprised and said to keep challenging the system by reducing. The only way I could cope was to reduce by 0.5mg every 8-14 weeks, but it was still very hard day to day. By the time I got to 1.5mg and feeling way better my Synacthen test reflected that feeling.
The difficulty with this is the unknown timescale and keeping the faith that it will get better and you will stop living like a shadow. There isn’t a short cut but do know that you are following many who have struggled. It’s good you are in the system and hopefully other potential causes are ruled out too, but it sounds very familiar.
Thanks Snazzy, it is encouraging to hear. As we all know, over a period of time of a chronic condition, it is hard to know what is what. I find it hard to let go of things, activities and people and I feel that has happened a lot between Covid and PMR. Changed relationships which is the hardest to deal with. Lucky I have a brilliant (but annoying) partner. 34 years and we love and support each other daily. I hate to think how people cope alone
This is probably another 'me too' thread. Add in - 'is it a flare or not' and we can be totally flummoxed. I keep telling myself 'ride the storm', but that doesn't work if it is a flare. Someone would be very rich if they found the way out! We have to believe it will pass!!
Not sure why but every time anyone mentions their age, if it’s the same as mine that somehow it resonates. I too feel just like you, I was never one for a mad social life but now just the thought of anything more than a quick trip to the shops produces the negative. I’m currently on 7.5mg Pred, I should be on more as I’ve just had what I consider a flare bit my GP knows little about PMR and cares even less. I have to calculate my own prescriptions and even then he refuses to sign off more than 1 month’s worth which means I can’t up them enough to counteract the flare in case I run out.
Anyway all this adds to the constant discomfort and pain which means everything seems like too much effort-just as you write.
I hope just knowing there’s someone else out there in the same position helps maybe a bit.
Well yes, and vice versa. I am lucky though as I have good support at home and also although my GP isn't really involved, I have an ongoing prescription that hasn't changed since the outset so I just order them as I go along. And a good rheumatologist. Plus when I went through a very stressful period before, I experienced a similar change of mindset where I became very negative in spite of my normal optimistic and sociable self. HRT sorted it out (even though the stress was still there) so that I could cope with the stressful situation I was trapped in. I believe this is the same, a temporary state change, although I am 12 years older and can't deny some of what is coming down the line. And of course the capacity to bounce back wanes a bit. But I look to David Attenborough for inspiration and if he can do it, so can we!
I think your GP is out of order on the prescription. Perhaps if you go in with this website’s advice on sick day rules etc and ask for a back up supply it may work?
Thankyou for posting. I am at more or less the same stage as you. I can't offer any advice, other than being a comrade in arms, and it sucks. What you describe is me down to a tee atm.
You put your feelings very well. I feel just the same’. I am 77 so I feel to some extent I am getting on in life it must be expected ! Maybe things will improve
Can't speak medically but as a fellow sufferer the symptoms sound awfully familiar. I am struggling to reduce below 10.5 which is usually considered a little high for adrenal symptoms but my Rheumy has said she thinks that is definitely the case. For me, after I've reduced .5 mg, it takes about 10 weeks of feeling just as you describe before the 'lazy' adrenal glands kick back in. At least, it's taken that long twice, so I'm hoping I can say it's a pattern, excuse knowing it takes me 10 weeks is better than thinking it isn't working at all.
Good luck with your test, and hopefully feeling better for getting a handle on the damn thing, so you can say " it's IS a thing, but it's not me, it's the condition "
We have said for a long time that lazy adrenals can make their presence felt from 10mg and even a bit higher. Nice to know a medic agrees it is possible.
Sorry you feel like this . I’m 62 & understand what you are saying . At times I’m in bed all day & there’s so much to do - But no energy, completely fatigued! And it does get to you .
I’m normally an energetic person and on the go by nature . But all this has literally floored me . I was Diagnosed with PMR in April & put on high dose of steroids . My rheumatologist thinks it’s not PMR & I will have blood tests done again & maybe investigate what’s going on .
Steroids can make you feel depressed and really low in mood , having no interest in things . I’ve just decided to take each day as it comes and hope it’ll all get a bit better as time goes by . I’ll be completely tapered off steroids in 10 days .
Thank you for posting and Snazzy keep waxing. Yesterday was awful. Tired wobbly full of doom anxious and a conviction that this was not ai but something far worse. I wrote of my recent experience of a journey to London on the train. That is a day I won’t ever forget. The confusion of what was happening. I still am not over it if that is what caused how I feel which of course maybe nothing to do with adrenals at all but some horrible disease or mental state. So you see everything you wrote helps me. Thank you.
I suppose that was why I wrote in the first place. Luckily I have people I can sound off to. I was so crabby/stroppy on Sunday that it was like the old days of PMT. Everything irritated me, but mostly myself as nothing seemed appealing to do. Everything seemed to be limited by something - if not my physical state then money, climate change, someone else's rules, guilt (never a constructive emotion). But deep down I know that it is an artificial reality. Or maybe I have lived in a fantasy world all my life. (In danger of getting into deep existential philosophy here so will go and do smething useful!)
thank you so much for posting this. I feel like I am dying...I seem to remember an energetic, highly motivated me...I am under enormous stress (I live in Israel, no more to say). I would choose to sleep or doze my way through every day. I suppose it is good that I have to work almost every day(demanding job online). don't even suggest I give up work...I would be destitute. Working, walking, moving requires more energy than I have. It has got progressively worse since I was on 4mg...now on 3. I am going to reduce to2.5 (one day a week at the time) tonight. This forum is so amazing. I live alone but with this community I don't feel isolated and alone. Wishing all fellow sufferers a speedy adrenal wake up and thanks for being there.
Yes, I feel the same ref last sentences , not that I am dying thankfully although I do keep having a sense of needing to wrap my life up as though it is nearly over, which is disquieting.
Like you, I am still working from home, publishing a regular booklet about art and music in Norwich and Norfolk where I live (clue is in the name!), plus other arts related work and a lot of campaigning about local issues. I sort of want to give it up but feel reluctant to let go of everything. Maybe a life-Hoover is on the horizon (well, the house doesn't get done!) after 30 years of living in the same place and basically the same way. Perhaps change is inevitable and this is part of it. But slow adrenals seem to make it impossible to tackle these job, Hoovering of any kind at all! Keep your courage up agingfeminist an keep working if you can as I believe it offers more than money but a sense of self worth too.
So glad you posted this. It describes how I feel , its not all the time but when it comes its horrible , I am on 7 pred and in my second year of having PMR and am 66 I got PMR just as I retired from work, my husband and I had so many plans, he is great and we do what we can but have dramatically had to scale things down.
I hope you get some answers and wish you well on your journey .
I don’t have any answers but my heart goes out to you as I feel exactly the same. Currently on 5mg with pain and stiffness pretty much under control and the deadly fatigue has gone at long last, but I feel very low and what you describe I could have written myself. I hope you get answers and start to feel better soon. Good luck.
Gosh Marion, what you have written is me to a 'T' but not all the time - I'm currently on 6 after 2 flares about to go to 5.5 and the only way I cope with my 'feelings' is that it won't last forever but it's so very difficult at times. Have e patience, keep smiling and take little steps in all you do.
Yes, I don't feel like it all the time either. quite up and down and sometimes I rather suspect that it follows a monthly cycle even though menopause was a long time ago bt I had similar feelings then so I wonder if it is all linked. Many people have described the adrenals as stuttering and I guess that is what it is. I think I have high expectations of myself!
I am no expert but your post could be describing me. My biggest struggle has been with mood and fatigue since I tapered below 5mg but no PNR pain.I have started taking short walks as being outside in nature seems to help. I have also stopped saying yes to anything I don't want to do. I am on 1mg of PRED which I plan to stop taking in a week. I long for how I felt before the PMR relapse and hold out hope that my adrenals will kick in.
I am sure that they will. When I had my synathecan test this morning they said that only 4 or 5 people in a year were shown to have non-working adrenals. I am not sure this percentage is but she said really rare. Good that you seem to have lost the PMR. I can't tell how much of mine is PMR and how much is weak leg muscles and dodgy knees which then leads to all the self-blame for not losing weight and not doing enough exercise but then again it is very hard. Sounds as though 1mg of pred you will soon be there!
I am feeling all of the above. I am reducing from 11mgs. to 10mgs. Forced by GP not refilling prednisolone. I have an appointment with Endocrinologist tomorrow. Don't have the energy or motivation to even keep my appointment. What will she test? Is an increase or replacement warranted? I have just enough for tomorrow morning dose. If I have to go to emergency room, what do I tell them? Any help appreciated.
At least you have an appointment with an endo who, with a bit of luck, will recignose what is going on. and will overrule a GP who probably doesn't have a clue that some people really struggle at this stage and again at about 7mg. No idea why some find it so hard, but they do.
If you have to go to the ER - because you have run out of pred, you tell them exactly that, that you have been forced to stop pred suddenly, which even a pharmacist should help you with.
Yes agreed, please muster the enthusiasm and motivation to go however hopeless it feels. Eventually you meet someone who cares and can do something for you. It might take some trial and error but getting past the primary care level should help. Specialists seem to have more tools in their box. Do you have a blue steroid card, or if not in the UK, an equivalent?
In the UK the blue steroid card indicates that you are on long-term steroids and in the unlikely event of collapse or accident would be vital. Might also help a pharmacist to bail you out but the endocrinologist should recognise that you need slow tapering and do the right thing
Trial and error for 2 years with Primary Care, 3 Rheumatologists, 2nd. Endocrinologist, Neurologist, Cardiologist and several Drs. while hospitalized. I hold out hope for a correct diagnosis. First for my PMR 2 years ago and then my GCA last April. 2022 after my cataract surgery. I'm going to ask the Endocrinologist about the blue steroid card tomorrow. I am disabled and currently in a wheelchair after going from my walker after the last hospitals and rehab. The stress, anxiety and depression doesn't help. I've developed SVT and a heart condition on top of osteoporosis. Enough complaining for today. I need to rest. Thank God to be able to gather information and vent here.
I made a mistake with my post 18minutes ago. I have had trouble being diagnosed with PMR and GCA. I have been taking high doses of prednisolone for months. I am taking 10-11mls. not mgs. It is the equivalent of 30-33mgs. I believe. It is not reducing my symptoms. Sorry for not making a clear post. I feel very confused and depressed.
It does make a massive difference of course - can't be an adrenal problem. But it almost certainly IS an endocrinology problem. And you will have to get to a lower dose somehow - and at that dose. the GP is being very negligent in not providing emergency cover. But you MUST go to the endo appointment.
Thank you for the quick reply. What about the pharmacist? Never even heard of that. I will keep my Endocrinologist appointment tomorrow. Hope to get some answers and help.
A pharmacist should provide emergency supplies for a longterm steroid patient deprived of their dose but it will still need the input of a doctor longer term. Which is why you need to see the endocrinologist tomorrow.
You provide so much information immediately. I am so blessed having found this forum. I just wish the Drs. were as knowledgeable about PMR and GCA. There needs to be more research. Even the difference between countries is mind boggling. I wish I never had succumbed to these diseases. No use crying over spilled milk. I know many people are experiencing worst maladies. I pray every day for God's help and mercy.
You hv a great attitude toward this issue. I’m going thru the same. Everything seems like too much effort. Spending a lot of time in my chair — reading. Hope it will go away soon. Initial prednisone gave me so much pep! I’m at 3mg now. Sigh. Hoping my system will do its own thing soonest!
A long post ! Not list.! I am 85 and finding reducing very difficult. Am now on alternate daily 4 and 3 for a month. Rheumy happy with that. But wonder where my post went!?!?
So grateful for all the honest input here! Such a support!
Hi Marion of Norwich! Sorry, got carried away with spaces, yes we all appear to have these dreadful phases, but I discovered on line of course, Henrik at Positivety Blog. This has really helped me on the bad days, Lack of motivation days, feeling down on myself etc. Regular emails from him keep me feeling I will win. Keep strong and smiling!
Apparently some people emerge very nicely from this condition and others don't. I was told my adrenals tested fine last Aug. after being on pred. for 3 yrs and reducing to 1.5 pred. per day and I could stop taking it altogether. I should have known better because after I dropped to 3 mgs daily I had a lot of nausea and two episodes of all night vomiting and diarrhea but I followed my doctors instructions.
Three months later I had lost my appetite and my weight went from 118llbs to 103llbs and even had trouble breathing but had no cold or allergies going on. Endoscopies, Cat-Scans, MRI's were ordered far into the future but meantime I felt as though I was dying. I reasoned that all of this started with the reduction and cessation of the steroids and I still had some so I decided on an amount and started with 10mgs tapering to 1 over a period of a couple of weeks and my appetite returned and the nausea decreased 90%. I have gained back 11llbs
Dear Marionofnorwich I'm telling you this because now I am left with all the mental conditions that you just described and have no idea why or how to deal with it. Is it part of having PMR? Is it from being on steroids for so long? I doubt that anyone knows the answer. I am dealing with it by making myself do certain things that I could care less about and hoping that someday I wake up with a different outlook on life and I think that is all you can do for now-just keep putting one foot in front of the other. Good luck to you!
Your adrenals may have tested fine when given an almighty chemical kick when provided out of a syringe. It doesn't mean the pituitary is reliably churning out ACTH naturally as required day to day to produce cortisol. And a lot of doctors forget that because the lab result looks fine.
Plus 1.5mg a day is LOADS to manage low activity PMR - even 1/2mg can be enough but zero is a step too far.
I am no expert either but think it is the adrenalin/cortisol/oestrogen balance that puts us on high alert, although a low key high alert if that makes sense, perceiving everything as a threat or a bit out of control, and I am hearing PMRpro say it will take a while for that side of things to balance so probably not PMR but more that your body has left all the hard work to the steroids. It sounds as though you are dealing with it in the nest way - a bit of Zen and waiting for your inimitable endocrine system to sort itself out and look after yourself (she says following her own advice)
Oh, I totally resonate with what you are feeling, the can't be bothered, too much effort, being overwhelmed etc suite of negativity. Feel and look a completely different person from how I was 2 years ago. I'm on 5mg pred,staying there for a bit now rheumatologist has agreed to stop leflunomide for a while; but assailed by a raft of other issues, diarrhoea, nerve and muscle problems in hands etc. Trying to keep buoyant is a struggle and the fatigue is so difficult to handle.I get solace from my daily walk round the country lanes, conversations with friends and from my interest in plants and herbs, but life feels so limited and it's hard to come to terms with it.
You are clearly trying to stay on top of it and I wish you all the best in the world in your struggle and hope that you can find some joy and acceptance. With love.
Thank you for reply. Have questioned it with GP for some while because I thought it might be the cause of fatigue and the other issues and she agreed to lower it to half dose 2 weeks ago. In the meantime I had a review with rheumi and he has suggested a 6 week break from it to see how it goes, not continuing my pred taper (from 5) for now.I am hoping to change my GP - she prescribed double the amount of edoxaban I needed, and when I saw her about hand problems on 29 June she said she would write for advice to rheumi and refer me to neurology. She did neither (I found out from her secretary), then I found she had made a urgent referral to neurology on 20th JULY!
Explosive urgent diarrhoea first thing a.m. then subsiding has been going on for 2 weeks and I am waiting for results of test samples.
Don't know whether I'm coming or going (pun not intended) but am getting good support from my medical herbalist who is well informed about the condition and the issues and obviously works alongside the essential meds.
That GP needs a complaint - not acceptable. One of the common side effects of leflunomide is the runs and peripheral neuropathy is also a common reason to discontinue leflunomide. If you have patients on something - you need to be familiar with the problems and it really isn't difficult these days.
Thanks again, I'm so grateful for all the info and advice . Wonder why the medical professionals couldn't make the connection. I read the bumph in the medication packs but it's difficult to interpret as the 'possible side effects ' seem to cover everything and then some.
Thank you for your post. I feel exactly as you explain coupled with having extreme mobility and pain issues in my leg and hip bones. I keep getting very tearful and really got stressed out and upset following a trip to the doctors this week. Weird for me and unpleasant. It is always helpful to know we are not alone.
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