Spoke with my GP yesterday regarding the extreme fatigue & rollercoaster of crashing following activity.
He is now going to test & look at the possibility of Addison's.
How does this mesh with PMR and Pred?
I'd welcome any advice or better knowledge.
Thanks.
This link from FAQs gives information on what happens to adrenals when on Pred. Not sure what dose you are on now, bio says 10mg so if that’s still the case then adrenals will be asleep anyway -as explained in first post in overall link- so not sure what GP is going to find out..
healthunlocked.com/pmrgcauk...
Thanks, I must admit I did think that & wondered ' if they are asleep then how will we know?' but with my limited knowledge at the time of the consultation it's difficult to question a GP.
Only positive is, ticking off what has been tried to get to the point where it can be stated, with some degree of certainty to others that " it is the PMR & Pred that is causing this patients extreme fatigue and they must do 'x & y' to stop the rollercoaster"
All a big learning process.
Deep joy!😔
Look on the bright side… you’ll be an expert on the whole PMR fiasco by the time you’re finished… whether you want to be or not is a different matter… 🤣😂
🤗 It pays to be pragmatic and to have a good understanding of what is going on with 'you' I've learnt so much day by day since joining and it helps very much. Thanks for everything.
Addison's is a primary adrenal insufficiency disorder - a disease in its own right. Being on long term pred, you have a SECONDARY adrenal deficiency- it has been cause by long term use of steroids which have resulted in suppression of production of cortisol. It is most likely that as you reduce the dose of pred, the function will recover but it may be slow and you will feel it in the meantime
Think of it as having a central heating system and a wood burning stove in the room where the thermostat for the boiler is. When the wood burner is going full blast the central heating is suppressed as the thermostat signals there is loads of warmth - the central heating parallels adrenal function and production of cortisol, the wood burner is the additional source of heat like pred is extra corticosteroid which means cortisol isn't required.
And to be honest - if your GP doesn't understand THAT - they could do with some CPD to instruct them.
Great analogy PMR pro 👍, but when we get to the stage that we cannot reduce any more nine years in the trying, i’m on 4 1/2 mg and haven’t been able to drop even .25, in 2 1/2 years, that includes adding methotrexate for that period of time. Do we just accept the low-dose of prednisolone or are there other drugs that can help adrenal glands to actually start working and get us off prednisolone? I haven’t got PMR any more that’s if I had it in the first place I do have an inflammatory arthritis. Hence the methotrexate, but the doctor seem to be content just leaving me on prednisone., after the recent study that said even low dose of prednisone can have great effects on your health with regards to the cardiovascular system. Suddenly I don’t feel safe at 4 1/2 mg for potentially the rest of my life.. your thoughts.
I am in exactly same position as you. At 4.5mg….struggling to walk round the house! Very low cortisol reading, so trying to lower is pure and absolute misery. Wish we had more answers , have tried so many times to very slowly lower….
,
I have tried so many times , just one day at 4.25 instead of 4.5 and it takes me a week to get back to the stage where I can function normally , you wouldn’t believe that such a small amount could knock you about so much .
There aren’t other drugs that will boost your adrenals into working - they have to do that themselves as you slowly reduce the Pred. This post relates to an article written many years ago to help those in similar situation to yours - but there is no magic bullet.
healthunlocked.com/pmrgcauk...
The oral Pred that we take for PMR, GCA etc is sometimes replaced by hydrocortisone [but that’s still a steroid] when PMR has gone but adrenals aren’t functioning.
Might be worth you asking to be referred to an endocrinologist.. perhaps discuss with doctor..
Just read the linked article.
Very good!
All adds to the knowledge & also helps to explain to others who are lucky enough not to suffer but look at you in a way that says " Well, you look ok to me!" 🤬
Trying to explain to folk is draining.
Knowing PMR 'should' go away in time helps but it seems to be a bit of a lottery.
But with no certainty & with systems in place and decision makers that hang their hats on your condition " will go away eventually because this book tells me so" it is very difficult.
It's the not knowing that can take its toll, especially when it comes to earning a living.
'It should' & 'It has' gone away are miles apart from each other.
But we live in hope because we have to! 🙏
It is draining trying to explain… which is why many give up trying to inform friends/family. More difficult for someone your age as well…you aren’t supposed to be ill.. they can sympathise if you have a broken leg, but not an invisible illness.
I know I’m always giving you links.. but here’s one written by a patient 20 years ago with another a/i illness to explain to one of her friends- it appears on many sites, you may or may not have seen it -
lupus.org.uk/patient-storie...
You may have read some or all of these from FAQs - but there may be nuggets you can pass on to others- - if they are interested.
healthunlocked.com/pmrgcauk...
You sound very down today, and that’s understandable, but in the vast majority of cases PMR does go into remission… unfortunately no one can tell you how long that will be.. and it’s not as clear cut as some other illnesses. You may have to wait for a procedure, but you know that after that you will be back to [almost] normal.
As you rightly say in your position the unknowing impacts on your return to working life… and that’s physically and mentally draining for you.
We may not all be in your position, but many have been… and we will help when we can - as the title of the video in link says - You are not alone.
Thank you so much.
Your help & advice and that of others is a massive massive help. Not sure what i'd have done without you all....❤Thank you❤
Yes , I think it’s time to get an endocrinologist involved that’s if I can get them to listen to me , I have brought the subject up a few times over the years with my Rheumy and been totally disregarded, seeing them once a year makes things even more difficult , we used to have a help line you could leave a message on but that has been shut down now . Frustrated is an understatement but will keep trying .
The only thing that stimulates the adrenal gland set-up to start working again is a lower dose of pred than you actually need for physiological function. That study is a red herring - I wrote about its flaws in a post recently when someone posted about it, There are a lot of confounders there they don't seem to have been accounted for and perhaps it is the disease itself that causes the problem. RA certainly is associated with an increased incidence of cardiovascular problems.
It isn't a good thing to leave the patient who DOESN'T need it for their illness on it undefinitely but in fact there are drugs everyone happily takes without thinking because they are freely available in a supermarket that are also potentially damaging such as NSAIDs and paracetamol. But if the option is stopping the pred and leaving either longterm low level inflammation throughout the body - also a root cause of heart disease and cancers - or you at risk of an adrenal crisis, the safer option is to take the pred. Your cumulative dose of pred is WAAAY lower than mine has been after 15 years on pred, at least 2/3 of it at doses above 10mg. And the alternative to pred for me is Actemra which also has a load of potential effects. But I don't worry about it because it may never happen and they allow me a really good quality of life in the meantime.
It is possible that switching to hydrocortisone MIGHT result in better stimulation of the HPA axis that governs it all - but it is still a corticosteroid and has its own adverse effects which some people find worse than those of pred. Pred is also approved for management of adrenal insufficiency so I would stick to that and keep trying to reduce the dose very slowly and hope that sometime you will be successful. But it can take years for that slow taper to work and you keep able to function in the meantime.
Oh - and the MTX only manages the rheumatological disease - it has no effect on the HPA problem other than allowing you to stick at a low dose of pred. But 4 1/2 is probably still on the high side.
What was the recent study that you mention regarding pred and cardiovascular system? I've got PAD since 4 years of pmr and Pred and think it must be related....
I picked up on a link on this forum that discussed a research paper with regards to long term pred even at low dose , one of our more knowledgable members might have the link. 👍
Do you mean this study? It can be found on different sites -
journals.plos.org/plosmedic...
that was the one 👍
Thank you, that makes perfect sense and beautifully explained.
If you have been taking steroids long term (over around four weeks) which is true for most of us you will have adrenal insufficiency anyway. When you are reducing steroids good sleep, good food, fresh air, etc …. all the things we know we should do to be healthy anyway really helps the deathly fatigue. In fact it is a good idea for PMR anyway and in fact for anyone! You will probably find that very slow reducing will let you get to zero steroids although it takes up to a year or so after that for the body to get back to normal.
Thanks.
GP has agreed to start a taper soon to see if that has any positive outcome.
Could be interesting.
I may be stuck between a rock and a hard place. If a reduction improves the fatigue but PMR symptoms flare up again, I may be stuck with the fatigue.
It's the fatigue and the rollercoaster that is stopping me from going back to work at the minute.
If i can improve that, then I can try to get back in the workplace with some adjustments.
If this is adrenal insufficiency, a reduction is unlikely to cure the fatigue, far more likely to increase it as a problem until the adrenal set up gets its act together and is able to produce enough cortisol to top up the lowering dose of pred. It takes time - and forcing things won;t really help.
Re taper, slowly, and small steps… much as you want to reduce don’t rush headlong into it. It may resolve one issue, but create another…
If you are having the deathly fatigue DON’T reduce, it will make it worse. Stay where you are. In fact I did go up a mg in a moment of weakness. It does sound like your doctor does not know much about steroids. Mind you I have come across several doctots who are consultants that don’t. The trouble is a lot of doctors seem to stop reading once they qualify. Very worrying as they do not read the literature from the pharmaceutical companies about their drugs.
I did ask the question of an increase a few weeks back, my brain said to me, 'If the Pred is taking over from the adrenals and I have got not ooomph when I need it, would an increase in Pred not help?' To be fair to my GP we were also discussing cognitive issues as well. We discussed if Pred was causing cognitive issues, & maybe an increase would not help?
Since then, my cognitive issues now come in waves rather than a constant, so something has helped, but i'm not sure what?
No you haven't got any oomph - as I explained in my post - the Pred is at a constant dose of cortisol.. whereas naturally your own cortisol may bumble along similarly at a constant dose, [although it does fluctuate a bit during the day] - when you find yourself in the that 'Fight or flight' scenario - they go into overdrive.
Cannot do that when they are in sleep mode.
This can be a tricky phase as I found out because while you have to reduce to challenge your cortisol producing process, you can’t hurry it. I found it needed a small drop like 0.5mg over weeks. For me that was 4-14 as the lower I got the slower I has to go. A doctor should know about secondary adrenal insufficiency and this is very likely in your case. To give them the benefit of the doubt, perhaps they don’t want to be too confident and rule Addison’s which is a different cause but same effect.
You may have to go through a protracted period of waiting for some adrenal action feeling half baked and useless. Trying to rush the process by forcing a reduction when you feel wiped out risks an adrenal crisis.
Always carry your Pred when not at home in case you have a shock or accident or whatever you are doing is a step too far.
I've had mind numbing fatigue all the way through. It improved quite a bit at 8mg but before that absolutely nothing I did helped. Now on 7.5 and I am still pacing myself. Long afternoon rests, good food, etc. I am working again in fits and starts but its under control. No overdoing it. Gentle exercise. We shall see. Good luck on your journey through this.
I have GCA and Addisons disease and take hydrocortisone. If I get ill I double steroids or if very bad I have to do injection. Often have extreme bouts of exhaustion,dizziness and feeling nauseous.I find it difficult!
i have secondary addisons through long term steriod use my endo said i have to take 5mg pred for the rest of my life
really you should have GOOD knowledgable endocrine consultant for adrenals. look up prof shern chew on google if he is still around he used to write on Net doctor, if that is still avaiable for info
Thanks 👍
I have been on steroids for 5.5 years and have found 6mg my 'happy place', however despite always encountering problems any lower than this, (3 times causing a need for a huge increase and a long taper to get back to 6mg) I was encouraged to try and get as low as possible. I reached 5mg and collapsed, updosed again and told to taper yet again, however, Christmas 23, I collapsed and stopped breathing. I have now been diagnosed with 'secondary adrenal insufficiency' due to a damaged pituitary gland (tumour removed 1987). I know I will be on steroids for life and have lots of 'medical emergency' items (bracelets, cards, and paramedic knowledge). I often wonder why endos and rheumys can't cross over (the rheumy trying to get me off, the endo saying ill never get off) ... had the rheumy paid attention to my previous history, they may not have had had me continuously trying to taper, leading to 2 colapses! Self advocating is second nature to me now, just be very 'body aware' and I find I get nausea, loss of appetite, extreme fatigue, vomiting, and dizzy when heading for 'adrenal crisis'. You know your body better than anyone, I would personally keep a journal too. I do hope if there's a diagnosis for Addisons, that it comes soon, then you know what you're working with! Take care! 💐
Hi Naim1. What a coincidence. I was wondering whether to ask members if anyone has Addisons alongside type2 diabetes. It seems I get every steroid induced....thingy going, and now diabetes to add to my list. My question was going to be does anyone else have these two together and if so any tips on navigating my way round it? Re your question, I was diagnosed with steroid induced Addisons after having a full blown adrenal crisis. The paramedics saved my life. I did not have a clue but I was seriously ill. I took myself off to bed and didn't wake up until in resus over 4 hours later.
A synacthen test will tell if it is your adrenal glands, but PMR definitely wipes you out. I used to be a very active person now I spend most of my day lying down.
I have been on steroids now for at least 16 years, but sometimes it seems necessary? I am on a permanent maintainance dose of 7.5. I also have emergency injections of hydrocortisone which work brilliantly when needed.
Not trying to scare you, but information is power sometimes?
Thank you so much for sharing your story & journey.
All information ( to me anyway) is valuable.
I'm glad my question has generated a very positive thread of other questions, thoughts and advice.
Sharing & understanding is a big big help. So thanks.
I wish you well. 🙏
I was diagnosed with Addison's disease 40 years ago at the age of 19 and have been on hydrocortisone ever since. I also have diabetes (LADA) which is insulin controlled. To add to mix I have hypoparathyroidism, hypothyroidism and CKD Stage 4 along with fibromyalgia and osteoarthritis.
My mother had PMR for the last 6 or 7 years of her life so I understand some of the similarities. I tried numerous times get her tested for Addison's as I was concerned about her having an Adrenal Crisis (VERY NASTY) but I never got anywhere as we just kept getting told that to kick in the adrenals then the pred had to be lower. My poor mam was barely functioning on her current dose of pred so I was really worried that going lower would be fatal. In the end after numerous discussions with her rheumy and at Mam's reluctance we came to the conclusion that it would be unwise to try to reduce her pred any further. Sadly her fatigue never improved.
Now after being diagnosed with fibromyalgia first I was wondering if it is possible to develop PMR years later? For the last few years my muscles seem to be getting weaker and constantly feel sore. I can blame my fatigue on any of the above so I really don't want to broach the possibility with my GP or Endocrinologist as it would appear that I was 'looking for problems'.
Any thoughts on this?
Hi Shelly.Thanks for taking the time to post. Our situations sound very similar. I share many of your illnesses and for good measure hydrocephalus and suborachnoid too. I'm sorry to hear your mam suffered with so much too. It seems to me that there is definitely a genetic possibility somewhere. I totally agree with you about getting labelled as one looking for problems, but when you know that you are ill and no-one wants to try to help because you are 'too complex' what choice are you left with. I'm afraid I'm at the stage now where I've given up, but I am over 70, you still are relatively young? Good luck with getting some helpful answers.
Best wishes to you
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