I am done. I am also done tappering

[krillemy]

I'm completely fed up with this disease! I can't reduce my prednisolone dosage below 10 mg, and I barely manage to maintain that level. Even methotrexate (MTX) doesn't fully address the problem, although it does provide some relief. My rheumatologist suggests that I most likely have no adrenal function, which means the first 5 mg of prednisolone is just compensating for what my adrenal glands would normally produce, leaving less available to control inflammation. This becomes even more problematic on days with viral infections or when facing emotional or physical stressors – and I have too many of those days. It leaves me drained, fatigued, stiff, and struggling with brain fog.

If I experience too many days like this, it develops into classic PMR symptoms. Right now, my shoulders are in a bad state, and I have pain in my thighs, hips, and more.

So, I have this idea: I stay on the lower dose of 10 mg but take an additional 1.25 mg on days with stressors or when I catch a cold (virus) or have planned physical activities. Does anyone else do this? It's like an extension of the "sick day rules" principle.

[SheffieldJane]

I have done sick day rules more than once when I was having a run of illness post Covid. I have taken a little extra Pred to get me through stress. I think that if your Rheumatologist suspects that your Adrenal function is non existent then you need an urgent referral to an Endocrinologist to take your case in hand. Has it occurred to your Rheumatologist that you may have developed non Cranial GCA/LVV? My symptoms were vague feelings of being unwell and headaches. I was diagnosed by a specialist Vascular Ultrasound Scan. We didn’t have much to go on - I just wasn’t feeling right and my Rheumatologist leaves no stone unturned. I did have it and was immediately put on 40 mgs.Your Rheumatologist sounds a bit casual in their attitude towards Adrenals - do you have an emergency injection kit with hydrocortisone for a possible Adrenal crisis? This can be life threatening. My Endocrinologist made sure I had one. You seem to be, being left very much to your own devices. No wonder you are fed up with your disease. In my view, it is not being managed and you are not being supported. Is your GP any good? Could they refer you to an Endocrinologist ( urgently) and initially do a simple morning Cortisol test in the surgery? Is there any chance at all of a second opinion from Rheumatology? Where in the Country are you? Someone may have a recommendation for you. It is essential in this climate that we keep fighting for ourselves - however much of a burden this feels. Wishing you the strength to sort this out.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Re rheumy recommendation, think krillemy lives in Denmark ...

[SheffieldJane in reply to DorsetLady]

I forgot but her Rheumatologist imho is giving the wrong explanation for her present symptoms as an Endo would confirm.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes I agree Rheumy is not giving good, and I did say that in another reply I thiught same as you.

[PMRpro Ambassador in reply to SheffieldJane]

Krillemy is in Denmark. And an endocrinologist is unlikely to take much interest when a patient is on 10mg or more - the adrenal function is suppressed anyway. They are only of any use at lower doses - not that there is much that can be done anyway.

[SheffieldJane in reply to PMRpro]

Yes I know that but she is getting this advice from her Rheumatologist who believes that she has no Adrenal Function so 5 of her 10 mgs is taken up compensating for that. Therefore the PMR is on 5 mgs and the Adrenaline uses the rest.. That is nonsense .Then our advice should be get Rheumatologist who understands the effect of Steroids on the Adrenal function and when treatment may be required

[PMRpro Ambassador in reply to SheffieldJane]

What I meant was we are unlikely to be able to recommend anyone. But even in the UK, getting accepted in an endocrinology unit when on 10mg pred is unlikely. And it doesn't work quite like that - the pred isn't dished out the way the rheumy seems to think.

[krillemy in reply to PMRpro]

Yes, that's true. Doctors here are not as concerned as I am at a dose of prednisolone that is above the maintenance level even for no adrenal function. Also, in Denmark, we have a central medicine register, meaning all healthcare professionals can access a list of my current medications and conditions. So, if I go to the ER, even unconscious, they will know what to do... it's really scary - no privacy here.

[PMRpro Ambassador in reply to krillemy]

No-one here was as bothered about my dose of pred as most UK doctors would be. 7 or 8mg is not unusual as a maintenance dose for adrenal insufficiency for patients to be able function well as opposed to at the bare minimum.

Now you see - I find the concept of a joined-up-thinking central medicine register very comforting - not an invasion of privacy at all. It would have saved me from a very unpleasant episode of atrial fibrillation as a drug when administered for something in the ED. Do you have a smartphone, loyalty card and bankcard? Then everything you do is recorded somewhere, all your SMSs, movements, spending, choice of coffee ...

[krillemy in reply to PMRpro]

True - there are many good things, but there is also the situation where a rheumatologist was convinced that I had been taking benzodiazepines because I was mentally ill, and believed I had ALS. It took much talk and angry convincing to explain that I had been given them while waiting for ALS test results... Also, people get the 'maybe it's in your head' much more often if they have been on SSRIs. But the good with the bad, as they say

[PMRpro Ambassador in reply to krillemy]

You get similar reactions from the GPs who were caring from you in such circumstances in some places! I got the "at your age" at 51 relating to the PMR symptoms but I did cut his feet out from under him regarding any suggestion of "all in your mind" before he could get there!!!

Here you have a list of current medications which is consulted at all points - and your history of medications is on the computer so they can see them all alongside every diagnosis they have ever made in order! Nothing to difficult to sort out so far ...

[krillemy in reply to PMRpro]

So 7-8mg? I thought it was less, like 5 mg. But it supports my argument. 10 mg at the beginning of your pred treatment is not 10 mg later down the road. So really I am down to 11.25 - 8mg = 3.75mg Not bad really 😂😜😊

[PMRpro Ambassador in reply to krillemy]

Depends on the person - 5mg is probably a starting point but some people need more.

Maybe I should explain "it doesn't work like that". Just because the pred in your body is exerting an effect in a role as an adrenal messenger doesn't mean it isn't also calming down the inflammation. There is nothing taking a scoop saying "this is instead of the adrenals" and another saying "this is all that's left for the inflammation and it isn't enough".

[Boss302Fan in reply to PMRpro]

  PMRpro My memory eludes me, but typically how long (in years) is it believed one has to be above 5-7 mg/day before there is a significant risk of Adrenals not recovering as Pred is tapered below 3-5 mg/d and AI having to be addressed? With regards to recovery itself I read that it can take a year for the Adrenals to fully recover. That is, after being on Pred past “n” years the time for the Adrenals to wake up increases and past “y” years the risk of Adrenals not recovering increases by some ‘factor’ per year.

[PMRpro Ambassador in reply to Boss302Fan]

Think it's a how long is a piece of string question! I know of someone who'd been on pred for over 11 years and recovered adrenal function - or at least, they got off pred! The older you are, the harder it is likely to be. That year post-pred is more for the whole set-up to settle down and function smoothly and reliably. The adrenal function must be pretty much there to be able to get off pred in the first place.

[Boss302Fan in reply to krillemy]

I wish the USA had such a health database and it had global access. Privacy is important in some cases, but I’d welcome a system where certified medical institutions could pull up my health record in real-time. It’s ridiculous that I provide info to my GP, and have to repeat the process with any health professional I approach. It should be a one and done, one database, if something changes in my Rx meds or supplements, it’s updated throughout by whatever mechanism that is secure. There are plenty of cloud servers with levels of data protection. With todays technology it’s a shame some institutions are still operating in the dark ages.

[krillemy in reply to SheffieldJane]

Thank you for pointing the GCA posibility out. There has been concern, but the consensus is that I do not have GCA. However, I remain vigilant and mention it occasionally to the rheumatologist. The approach here in Denmark concerning adrenals seems very casual. The prevailing attitude appears to be that patients succumb to complications from prednisolone use, rather than adrenal crises, which seems to be the mantra.

[SheffieldJane in reply to krillemy]

This is statistically correct I guess. One of my GPs did not really know much about the impact of long term Pred on the Adrenal System, she needed to be more aware. It is part of the picture.

[DorsetLady PMRGCAuk volunteer]

You may not want to entertain the option, but I think you would be better on a slightly higher dose than 10mg, rather than keep upping the dose as and when.

As you only talking about raising it by 1.25mg, which is something and nothing - I'd go to back 11mg or 12mg every day. Not sure what tablets you can get in Denmark..

As for no adrenal function - you won't at present because you are above the usual physiological dose your body naturally produces, but that doesn't mean they aren't capable of working again once you get below that... only time and a lower dose will tell.

I do agree with SheffieldJane that perhaps your rheumy should be making sure whether your issues in tapering are PMR, or something else ... and not blaming adrenals.

[krillemy in reply to DorsetLady]

I went up to 11,25 mg - seems to be doing better and more steady allready. We only get 2,5 mg tablets, that we can split.

[DorsetLady PMRGCAuk volunteer in reply to krillemy]

Hmm.. did wonder if that was the case re. tablet sizes… so I’d stick to 11.25mg for time being…good luck.

[krillemy in reply to DorsetLady]

Thanks!

[powerwalk]

Feel a bit like you. I seem to go around in circles and not get anywhere!! I never got an emergency kit even though i had a synachten test and told my adrenals were not working. I am on a lower dose, 5.25mg. But i have put them up slightly for a day or so if i feel im running on empty, which doesnt take much. I dont think my rheumy would even think of doing tests for lvv or anything else. Ive had some very weird events recently, severe room spinning and having to lie down, heart racing and wiped out but i know if i mention it i'll get that blank stare!!!! Its a constant battle i can understand you being fed up.

[PMRpro Ambassador in reply to powerwalk]

Then that is something to take to the GP and if they don't respond - when it happens call the emergency services. That could well be cardiac related and that needs investigating.

[powerwalk in reply to PMRpro]

Ive to see gp next week for prescription renewal. I will mention. Never a dull moment.

[Bluey-1 in reply to powerwalk]

Those events sound very disconcerting. As a matter of interest what were your numbers that indicated your adrenals weren’t working? The morning cortisal bloods and post synacthen test?

[powerwalk in reply to Bluey-1]

At the time i had been 4.5 mg for over a year. I had been lower but couldnt keep it going. The test showed i was 20. I cant remember the upper side but i was way down. (Maybe 200 was the upper end). I have no reason unfortunately to think its any better as the fatigue is awful. But i have a history of fibro and ME. I think my adrensls were happy to shut down!!!

[PMRpro Ambassador in reply to powerwalk]

4.5mg pred is loads to suppress cortisol production - I think it was Snazzy who had a rubbish result at 3.5 but by 1.5 it was looking much better,

[powerwalk in reply to PMRpro]

I wish i had the opportunity to try. I barely function as it is!! Not that ive given up hope tomorrow might be better!!!😊

[Bluey-1 in reply to PMRpro]

This gives me hope on 3mg. Just have to watch the pacing and take it all very gently.

[Bluey-1 in reply to powerwalk]

I’m in the adrenal territory and finding out as much as I can. Sorry to hear you’re suffering fatigue. It’s grim. I’m resting up today after seeing family at the weekend. Even nice things are exhausting and I need to get some energy for our holidays on Friday.

[powerwalk in reply to Bluey-1]

Oh i know!! You pay for a nice time! Enjoy holiday i hope you feel ok for it.

[Pixix in reply to powerwalk]

I have those problems..I would see your GP. Mine are handled at GPlevel…perfectly. It may be nothing connected with PMR/GCA! But I see you have fibro & ME, so, like me (I have Polymyalgia , Fibromyalgia, Trochanteric bursitis, Hypermobility, Raynauds Syndrome, Osteo Arthritis, Sciatica, Essential Tremor, Haemangioma (spinal), Orthostatic hypotension, Dry Macular Degeneration, Plantar Fasciitis), you already have fatigue as an issues before PMR also adds to it! Mine (doesn’t mean yours are) are cardiac related & vertigo, both of which are being sorted out by my GP. In fact, I’ve never consulted a rheumy for PMR!!

[powerwalk in reply to Pixix]

Thank you. Thats a lot!! It seems never ending at times.

[Boss302Fan in reply to powerwalk]

What dose of Pred were you when you had a Synachten test? I was at 2.5 mg, >=5 mg seems a little high.

[powerwalk in reply to Boss302Fan]

4.5 or 5 from memory. I think he based it too on the fact that i had been on 4.5 for over a year and couldnt get lower. He never asked to see me again!!!

[Boss302Fan in reply to powerwalk]

I would think would investigate other contributor to ensure it’s PMR, and if it is, who’s say it hasn’t plateaued for a year? I was fortunate I had no other muscular related issues, so the pain was due to PMR so I just took what was needed to negate the pain and didn’t fret about it. Some people have dealt with the disease for more than 10 years! My father had RA since he was 40 yo and suffered a whole lot more than I did with PMR, so I was thankful I didn’t have to deal with RA!

[WhatNoCarbs]

You mention earlier about having to split tablets. I wasn’t able to have such tablets as they contained milk products, so I couldn’t take them. My Doctor (UK) suggested tablets that can be dissolved (apparently a bit more expensive…). This was much better, as I could dissolve say 10mg in a known quantity of water and just drink a percentage of it. Needless to say, I am now on 10mg, so I have the whole lot, so no longer an issue.

[krillemy in reply to WhatNoCarbs]

Good idea, but we don´t have them. We may have solutions though. I will look into that

10 mg is my border also it seems..

[WhatNoCarbs]

Thanks for your reply. I’m having a few issues with it just this past week myself. No idea if it’s some bug I’m fighting off or PMR. Nightmare in UK trying to see a Doctor! If I ever find a way off the steroids I’ll let you all know!

[AtopicGuy]

A quick glance at your previous posts shows you were assessed for the neurological diseases ALS and MS, and had EMG. Were you also screened for MG (myasthenia gravis)? The main MG blood tests are for anti-AChR and anti-MuSK antibodies, but there are others.

MG is an autoimmune disease that responds to prednisolone. Its cause lies at the connection between the nerves and the muscles, so it is classed as neurological. It involves auto-antibodies rather than auto-immune cells, so CRP and ESR tests are normal. It's easy to diagnose once one or more muscles become almost paralysed with use, but not before.

[krillemy in reply to AtopicGuy]

Yes, I have been assessed for MG. During my last visit for a second opinion with a neurology professor, I insisted on an explanation as to why it was not seronegative MG. He stated that I did not really have muscle weakness, but that pain was the reason behind the perceived weakness. Also, he mentioned that there is no pain involved in MG until very far ahead in the disease. He was an arrogant idiot, but probably right, as it was in 2022, and I am still the same, no paralysis yet

[AtopicGuy]

I'm 61. When I'm off prednisolone (or push myself when on it) I have a dull, sickly ache in all my muscles. I can't raise my upper arms above the horizontal. Merely getting showered and dressed by lunchtime exhausts me. I'm not sleepy, yet my eye lids become heavy and I can't help but blink many times per second. I struggle to sit upright or hold my head up. My CRP & ESR are normal, but I have 0.12 nmol/L of anti-AChR antibodies, which the NHS classes as "Negative" for MG.

So I'm stranded, with no diagnosis for PMR or MG. Five years ago, I had milder symptoms but still managed to ski, jack up trucks and do DIY. Now I can do virtually nothing. My muscles are slowly disappearing and I have lost my tendon reflexes (usually a sign of neuropathy). Twenty minutes of EMG was normal, so I am denied treatment.

Those pathogenic MG antibodies are the best clue I have as to what's going on. I won't rest until I get to the bottom of that, assuming I don't lose the will to live, first, of course!

The difference between UK and USA attitudes to MG are stunning. This US neurologist says:

"Myasthenia gravis is an autoimmune disease characterized by muscle weakness of the voluntary muscles. The more these muscles are used, the more they weaken. That means everyday activities such as keeping your eyes open, holding up your head or using your arms for overhead activities can become challenging by the end of the day."

rush.edu/news/living-myasth...

[krillemy in reply to AtopicGuy]

I am sorry for you. I have settled with the “we treat as PMR” because pred works for me, and although it fluctuates I am in better shape than before and it seems not to progress. Best of luck to your! ☺️☺️

[AtopicGuy in reply to krillemy]

Thank you. The one good thing about an MG diagnosis would be that it might be treatable without steroids.

[Brooklyn747]

You almost need to need Einstein to work these complex problems out.Thank God for this forum that enables difficult medical issues to be aired and discussed in a rational and scientific manner.

We are so lucky to have experienced and knowledgeable volunteers assisting us with our challenges.

Bless you and thank you.