When we reduce pred to say 7.5mg, we’re at a physiological dose, and hopefully our adrenals kick back in. We continue to reduce pred and assuming our adrenals are ok they produce a bit more, supposedly to make it up to around the 7.5 total.
So, apart from the need to wean off pred for the adrenal’s sake.... we’re only ever going to get 7.5 from then on. Some as pred and some as natural cortisol. So could it be considered that at this point that the PMR could be dealt with by the body’s cortisol alone IF our bodies could reliably ramp up production to ‘normal’ levels? Is our PMR ‘sorted’ by this point? And it’s adrenal function that we’re dealing with?
(This is excluding the possibility of a flare, raising the ‘PMR need’ above physiological levels again)
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It is all very confusing. My Endocrinologist says that Prednisalone suppresses the natural production of Cortisol and to prompt it the body must feel the lack. Therefore alternate day low dose Pred is more likely to do the trick e.g 4 mg one day 3 mg the next. Or his preference, move on to the equivalent dose of Hydrocortisone, that is weaker, and shorter acting, taken in 3 daily doses with the lowest dose at say 5pm. Otherwise there is the danger of a complete atrophy of the Adrenal glands and the need for Hydrocortisone or similar for life, with the attendant worry of increasing during times of physical or emotional stress. I have been diagnosed with sluggish Adrenal gland function and I don’t believe that I am particularly unusual. I am currently on 5 mgs of Prednisalone and not feeling very well. I am reluctant to change my drug regime before I go to Australia for a few weeks. Normally I would increase my Pred feeling as I do but I am concerned about doing so. The management of our conditions is only clear to a special group of doctors.
I haven’t changed anything Bonnie. I am just a bit, “rabbit in the headlights” and feeling pretty awful at 5 mgs. Totally exhausted and as if I have a virus, some pain and particular difficulty getting out of a normal height car. Before I saw the Endo I would have increased my dose by a couple of mgs. It is deciding whether this is feeling ill to a purpose ( giving my Adrenals a chance) or am I risking ( for the first time) a full blown PMR flare or worse, by not checking inflammation?
PMR 3 years diagnosed. Struggling at 5 mgs taken with yoghurt in the morning to no dramatic or even appreciable effect.
Feeling at the mercy of medical guesswork. Respected Rheumatologist would add Methotrexate to my dose - I wanted to avoid a new drug. Australia looms in a couple of weeks. 😩
I do sympathise. I was embarrassed when being picked up by friends in their new, high step car. I had to be helped in from behind to get in and felt like a creaking parcel. Like you, I have OA in both knees and GP is reluctant to recommend operation because, he says, of my age and heart condition
Yep, those darn OA ravaged knees on top of the PMR (sigh). So sorry that you are getting pressure to take methotrexate, AND feeling lousy before your trip. There is so much pressure to NOT increase our daily pred dose for one reason or another. In your case I suspect your hesitation to do so is rooted in your sluggish adrenal glands and a desire to kick start them.
In the end you must decide your course of action moving forward, listen to your gut and symptoms and try not to be bullied into anything you are not comfortable with. My former rheumy pushed Methotrxate on me at all 3 appointments, and I had just been diagnosed a month earlier. Ridiculous!!
5ft 3 I'm afraid, sometimes think the spinning things you can put under you to get out of a car, then two feet out of the car might be easier for some..(haven't explained that very well)
I bought a swivel seat but only works with a flattish seat, no good with bucket types. I gave mine to a friend with RA and she is thrilled with it, right sort of seat. I am back to getting in by sitting on seat sideways with both feet on ground, grabbing steering wheel and swinging round. Not ideal but better than hiking OA hip on first. Don’t know how long the wheel will put up with it 🥴
Thanks for the info marymon. I have protective seat covers on the front seats in my car. I have put a cushion under that, in the bucket seat, for my friend to get in and out as i am ok using steering wheel for help. Dragging my left leg behind. I was going to buy a swivel seat for her but thought it might be dodgy in bucket seat.
Sorry you are feeling so rough. And before a big trip with all the stress of travel. Your endocrinologist may be right but it is not proven from evidence on this forum. Life is for living and if an extra few mg of Pred each day will make you feel like you......why not? My morning Pred at 3mg per day seems to take a couple of hours to kick in. Stress reduction, even the unrecognised stress of being unwell, can be achieved by Mindfulness. Not just a course, but a way of living.
Glad to report that the Tai Chi class for over 55s I started 2 weeks ago seems to benefit my muscles and feeling of well being.
My Endo’s priority is safeguarding my Adrenal Glands. Mine is feeling well enough to have a life.
I did a mindfulness course and it was lovely, I need to be mindful to be mindful. I love the way that Japanese elders do Tai Chi in the Street, it looks so graceful.
I am at 5.5 but just got a cold and leaving for Sweden in a week so I am going back to 6 until the cold is past and then going back down.. to 5.5 and continuing on slowly again... might be in my head but I always feel like if I go up a bit before a trip it will be better. Perhaps just for your trip you can go up..then more quickly down. What the heck. we've been on this so long..what's an extra couple weeks up again?
To be honest I think my increasing my dose, albeit for a short time and still in the low range, for a flare about 18 months ago has made a very bad change in my ability to taper. I had a fairly uneventful taper to 1.5 and now I'm finding it really hard to get to 2, after months and months at 2.5. I'm determined to try to fight through this now because I do NOT want to be on pred or equivalent for the rest of my life if I can help it. Have found that small doses of either aspirin or tylenol actually do help increased pain, so, not every day, from time to time when it gets too much I give myself a dose of one of these painkillers and it's helping me stay at 2. I don't know how long it will take before I feel as good at 2 as I did at 2.5, but I'm willing to wait it out, and then try the same thing to get down further. It seems to me if these other painkillers are working it's not PMR so I just have to deal with it. I have been very fatigued from time to time lately, which is a worry, but one lives in hope....
The Endo told me that the most important thing was to take it in the morning and not at night or evennig like it did once below 5mg. I have to say it helped. Alternate day dosing I find prolongs the agony for me.
That sounds logical but I found it too much swinging doses in quick succession. I didn’t fancy taking one for the team and persisting with it to see if it was more effective than DSNS.
My tapering has stalled, for the past 8 months, at 7.5 mg pred. Even alternate-day dosing of 7 / 7.5 mg pred brings back bilateral PMR shoulder pain within a week or so.
Even though I am at the adrenals-kick-back-in boundary, I guess I am not suffering pred withdrawal by tapering below 7.5 mg. Or am I? What symptoms are others experiencing just below 7.5 mg?
I stalled at 8mg. When I tried lower I got nausea and diarrhoea, and generally felt yuck. I just stuck it out at 8 and kept trying. I’ve reached 6, now trying 5, but it’s difficult.
Yes it makes sense to drop 0.5, except I take GR pred. And explaining to my GP why I want some plain and some GR is more than I can take! But I will have to bite the bullet soon, maybe with the lady GP I saw recently. I’m seeing her end of the month re ‘my hormones’. Or maybe I’ll just request it via the receptionist. TBH I don’t think the GP’s get anywhere near the repeat requests!
😂🤣 Been there done that! Always end up with something totally different. (My favourite was the oral Nystatin drops prescribed for vaginal thrush. Oh how we laughed! 😂🤣😂🤣)
~Does your GP have an approachable Nurse in which you can discuss this with? Not sure how your system works in UK but in NZ have a Nurse/s with whom I can share concerns etc.
I have been known to get repeats via my the Nurse at times which is never an issue.
Hi SheffieldJane - was initially pxd Pred (uncoated only in NZ) Jan 2014 which quickly ulcerated tum despite other precautions in place.
Always had delicate gut so Rheumy prxd to Hydrocortisone which I have made up by a compouding company in Ak in an acid resistant capsule (imported from Auz) to break down in bowel leaving stomach completely intact.
Costs plenty but worth every cent & been taking since Feb 2014.
I am up & down like you, have a variety of other health issues now but have generally been happy with the hydrocortisone.
I have found as I get lower OA has come to the fore in a big way so not sure what is what presently.
Haven't seen Rheumy for some time and overdue to check in.
~Yes it has and my body responded well to lower dose too. Only when suspected GCA + temple biopsy about 18 months in did I needed to take a sizable amount. God forbid that was fortunately not for long ~
Megams, I found some plain pred at the back of the cupboard. Now taking 5.5mg, Third day today, so far so good. Feel better than being at 6 and dropping to 5 DSNS style. Time will tell!
~Excellent to hear Soraya & pleased that thus far new level going well. May this continue & may the DSNS regime be as smooth as possible. Will be keen to know as I get stuck at around the 3mg to 3.5mg dosage & now not sure if PMR still active as significant OA evident.
Amazing what we have hiding in the back of our cupboard ~
From my observation and what my Endo said, I believe you’re not at the proper wake up stage until 5mg. 7ish is when you desperately need some extra cortisol but it doesn’t come. I felt a ‘switch’ go around 5mg but above that I felt permanently flu like, wobbly, emotional and sore. By 3mg the lights really came on. For those who absorb less of their Pred than most this will probably happen at higher doses.
....but it leads to another question!😂 Or maybe it’s the same question? From 3mg one could therefore expect to be able to reduce fairly rapidly, knowing the adrenals had got the message. (Point will vary in individuals).
I think I’m a low absorber, 15 at the outset didn’t cut it, 20 did; my ‘adrenal symptoms’ started at 8. (My theory, nothing scientific)
Not for me! I took my first dose of 2mg having spent 8 weeks getting to 2.5mg. The next day before my 2.5mg kicked I felt dreadful. Once settled at 3mg I thought I could take on the world, but 2.5mg I was rubbish until it settled. This 2mg lark is going to take me longer than 8 weeks I’m sure. I might even double the time.
From two websites of The Imperial Centre for Endocrinology:
"If you look at old textbooks and websites, you will see that in the past, people thought that 7.5mg was the equivalent amount of prednisolone that you need in a day, but we now know that this is too much and is much closer to 3mg. Even doses of 3-7.5 mg therefore have the potential to cause side effects."
“We know that patients who have no adrenal glands feel fine on 3mg - 4mg prednisolone so that is the equivalent of what your adrenal glands make daily. If you feel unwell as you cut the dose before you reach 4mg, that would suggest that your primary vasculitis is not fully in remission. However if you get down to 3mg, then reducing the dose further requires your own adrenal glands to be in working order.”
I'm alternating 7 7.5 and am stiff am, slightly easing up pm, but aware that I am a bit slower. However coping much better than a few months ago when I had to go back up to 10 and reduce again from there. I am able to do all I want/need to do and managing. However I am not rushing to reduce further and staying at this level for at least one month. X
I'm slowly tapering and finding it difficult to fight off this extremely feeling of fatigue. But I won't give in to it.
I'm down to 7mg and as I've said before, I have withdrawal symptoms...it will last for 3-5 days and I don't give up. I take a couple of paracetamol and it does help.
At 2am I wake to take my Prednisone with a little yogurt and that has helped the tummy issue.
Like everyone here, I also want to get off Prednisone asap, but I will not rush it.
It's very easy to pop another gram or two of prednisone when we feel stressed, but as someone said earlier, using Prednisone as a temporary preventive medicine for stress, can have the consequences later when trying to reduce.
My CRP is up, which doesn't look 👀 good, but I shall fight it.
I’m trying to stay at 6 but with snow shoveling and lots of “winter exercise” it’s tough...feel much worse more often than when at 10 or 9 that’s for sure...and I am confused..am I feeling bad some days from PMR, pred withdrawal or adrenals kicking in...who knows??
I don't think you should be doing so much snow shoveling. Your body has been weakened by pmr and exercise should be gradual ...something similar to tapering.
I pop a couple of paracetamol s if I feel that bit extra pain. It does help.
Sure does and I do...the OA I’ve had for a few years raises its head and some ibuprofen & Tylenol help that...can’t stop shoveling and snow blowing or I’d be buried!! Horrible winter..
My tapering experience is similar. (Down under, the ski season is 3 months away.)
I am abiding by forum wisdom of taking just enough pred to to eliminate symptoms, where those symptoms begin several days after a taper. Consequently, I'm stuck on 7.5 mg feeling fine.
Ok, now that took me down a different thought process all together! I’m at 4 mg and every time I get to 3 mg I have a “flare” which is probably not GCA at all but secondary adrenal insufficiency symptoms caused by long term prednisone use?
It also could be withdrawal symptoms. Every time I go down a little by 0.5mg ( half 1mg)I feel a little pmr pains again, but after 3 or 4 days things are settling down. I'm still on 7mg Prednisone and hope tonight to reduce again. 🙏 to 6.5mg.
If your adrenals were reliably making up the shortfall, you’d feel fine wouldn’t you?
If your adrenals aren’t making up the difference, then your total body cortisol is lower than required, which would allow GCA symptoms to resurface?
So if we could literally switch our adrenals back on to full function, then they should be able to provide sufficient cortisol to deal with any symptoms, and we could stop pred and our bodies could deal with the inflammation???
The train now arriving at platform 4 is the delayed service from Hypothalamus, Pituitary and Adrenal. We apologise for the delay which is beyond our control 😉
Due to my withdrawal feelings at low doses I have wondered for some time whether many poeple’s ‘flares’ that have prompted a reasonable rise in Pred haven’t been for this reason. It helps not having PMR and having gone through it enough times to know it can be quite painful. I hope I’m not caught out one day!
Interesting. As you know we PMRers can have great difficulty distinguishing PMR resurgence and Steroid withdrawal pains. I’m quite sure that my early reductions were halted due to SW, and not PMR. If only Drs explained this to us all!
I wonder if pure GCAers manage to reduce more effectively because of this? Would still have the adrenal conundrum though, at the end.
No - because the natural cortisol doesn't have the same antiinflammatory effect as cortisol. Some corticosteroids have greater antiinflammatory actions than others. These are two different problems that just happen to be solved by the same substance.
There has been a suggestion that poor adrenal function may be involved in PMR because they have found lower adrenal function in some PMR patients at the start but it has never been proven and obviously isn't a factor for all patients - the majority of people DO get down to very low doses or even zero even if it not happening is more common than many doctors think.
The problem with adrenal function is it isn't dependent on a single variable - it is a whole set-up, the HPA axis comprising the hypothalamus, pituitary and adrenal glands and several substances from other organs as well that all combine in the right proportions to run YOUR body. It's like baking - change one ingredient and you may have to change the others too. And in the human body it can be a year or even more before reliable Normal Service is restored. It may work well intermittently but not at 100% for 100% of the time.
You can't say any particular dose of pred - for a start there is the bioavailability to consider, how much of the oral dose YOUR body benefits from - but how well you function also varies on the demands you put on it: stress, we're talking about you! And how well your thyroid and the other organs are working.
It is reasonable to assume all is fairly well when you feel OK - but karools on here was at 2mg and felt fine but it so happened her doctor did a synacthen test and found she has adrenal failure - no cortisol response to stress. So even how you feel isn't always certain. However - to go with that is an article from a London group of endocrinologists that says the figure of 7.5mg that has always been touted may not be the truth and that we function fine on much less pred, down to 2 or 3mg is enough for day to day purposes. The problem arises when we are under stress - sick, injured, mental health issues bring in a need for a surge of cortisol that doesn't appear. Like putting your foot down on the accelerator in a tight spot in the car and the increase in speed doesn't happen.
Thank you so much for that explanation! We talk so much about stress on this forum and I have a new way to understand what happens. We can’t take stress because of an inappropriate response from our sluggish or absent adrenals. At this point in my journey I think I need an endocrinologist not a rheumatologist? At my last appointment we chatted for 5 min about unrelated stuff and she told me to come back in a year.
Thanks PMRPro for the clear explanation, we have to get info here we don’t get there!!
You know, for the past three years I have been unable to figure out why I need a doctor at all. I had one acute UTI that needed urgent attention but outside of that I plot my own course and that has worked out well. In the end I guess the best doctor for me is one who generally leaves me alone and does not force unwanted therapies. She said she is retiring in a few months so she probably has “short timers” attitude! Did not stop her from billing my insurance mega bucks though.
Oh dear we are so complicated aren`t we.....my answer is we should be able to escape to a PMR island to avoid all stresses in life......lower the pred, and well, …….then I woke up, sorry just dreaming!.....
I think it is such a shame that we struggle to lower the pred, only to be hit by the adrenal problem....so unfair!....
I think this for me raises more questions than answers!! I’m still at the dizzy heights of 14 mg but last time I was at 11 mg I had DF and so came to the conclusion along with other factors that maybe I ( or rather my body) doesn’t take on board the whole dose of Pred that I’m taking and therefore I need more. When I went down to 10.5 I had terrible pain and stiffness ( I only had PMR and not PMRGCA that I have now) My way of telling if it was withdrawal pain and not enough Pred was to see if the pain got better or appeared to get worse and in which case one would increase the dose. I suppose folk on 7.5 or about and Jane on her 5 mg if in pain are unsure whether it’s withdrawal pain or whether an increase in steroids is called for. Snazzy didn’t have PMR so knew it was withdrawal and folk who don’t use all the Pred they are taking ( can’t think of right terminology- Pred head!!) would have the same problem at a higher dose? Does that make sense or have I misunderstood along the way?
Yes bioavailability!! Thank you . Glad I didn’t get lost along the way! One can have that false impression that the lower you go on Pred the easier it becomes and of course that’s not the case at all! 😘
Thanks so much for everyone’s contributions to this thread. All very helpful. I suspect I’m on the lower end of the bioavailability spectrum as I have to split my dose to get almost full relief of symptoms, and I started to struggle with my taper going to 9.5 from 10.
I also wonder if one’s weight is a factor. As I was losing 30lbs my taper went smoothly, then Christmas came, I introduced more carbs, the weight loss stalled and the taper got tricky. Might diet also be a factor in our overall management of these conditions?
So grateful for this forum and the wisdom of the members. Thanks for sharing.
Bioavailability and duration of efficacy are different things. The antiinflammatory effect lasts for 12-36 hours depending on the person - if you are at the 12 hour end the antiinflammatory effect will wear off far sooner and you will feel the symptoms surfacing.
Carbs, especially simple ones, will raise BS and sugar is pro-inflammatory and makes a significant difference for many.
Yes, you have mentioned before about bioavailability and duration of efficacy being two different things. I fear I’m on the “short end” (for lack of a better word), with both 😠
And yes, I’m aware of the carbs and inflammatory effect, that’s why I’m back to my previous diet which is low in carbs, sugar and salt. It sure was a delicious few months though.
At this stage, with more difficulty tapering, and inflammation that seems to be migrating upwards to my head, I am trying to avoid anything that will exacerbate things.
You’re not alone PMRCanada! I’ve strayed of late too. Doesn’t help that hubby has resumed his baking....Death by Chocolate! Very nearly 😉
I need to list things again, not the baddies, but the goodies and concentrate on them. But I do need to eat good brown carbs, I lose weight at the drop of a hat, seriously annoying.
My OH started baking bread again. I’m quite the opposite to you, gain weight easily. I’m trying to lose an additional 15 pounds to help out with my poor knees who are supporting me.
Hi Sheffield Jane,l am on 5 mg of pred and do not feel as well as l used to ,even when l was only on 3 mgs l felt reasonably OK untill l had a flare.My GP has asked me to take 4mg one day and 5 the next and so on,but l am afraid to lower the dose .l have a lot less energy and pressure around my eyes ,especially after bending down ,which is often necessary when cleaning the house etc. It is an effort to go shopping or walking very far,l always used to travel into town every week but only manage to get to the local shops now.l guess l shall have to see my GP again ,l have not had a blood test for nearly eighteen months ,l was given blood tests every six months with my previous GP,as l am also taking thyroxine.l hope that the trip to Australia will be a lovely one,perhaps a good holiday is what you need ,it will give you a chance to relax and hopefully you will feel much better.Take care ,and please let us no how you get on xx.
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