HI All
I have just reduced to 5mgs preds (half a mg a month) and feel exhausted. My Dr said there would be no problem with adrenal withdrawal although my Rheumy said I may feel a bit 'off'.
I do have fibro too and inflammatory arthritis so unsure if its that or the reduction of steroids. If others have found this too at this dose, how long before it balances about a bit?
Many thanks as always
I have no working adrenals and was at 7 1/2 and got very sick so I went up to nine with the OK of the Endo chronologist and rheumatologist. That did not work either and I am at 14 now. Seems to be OK but I get very tired in the evening and sluggish in the morning. So when they say You will not feel anything that is far from the truth.
Hi Lesley2015
Think there’s quite a few of us with this issue right now, l was at 5mg last summer but following an ‘episode’ last September l wondered if my adrenals were unable to produce any Cortisol, l had a Synacthen Test, the results of which prompted my Rheumatologist to refer me to an Endocrinologist!........
But basically he says my Adrenal Glands WILL Wake Up! Just reduce slowly! Tell us something we don’t know!.......
I’m now on 7mg starting the Slow Reduction to 6.5mg!
Good Luck with your reduction🍀
Best Wishes
Mrs N x
I've been on 5 mg for av few months, advice of rheumatologist. I'm having a synacthen test on Monday. Presumably that will decide if I can go any lower. I did try 4 mg in January but felt dreadful and had to return to to 10 mg. DSNS until reached 5 mg, where I've remained. Don't feel too bad, my fingers seem to be the worst. Saw OT and have been given excercises to do. X-rays and scan show no inflammation in my joints.
I am at 5 mgs for about 2 months now. The passage from 7-5 was hard, not so much fatigue as weakness late afternoon until after dinner. Mostly in my legs. Then as this symptoms seemed to recede I became stress intolerant, sensitive, indecisive, responding more emotionally than is typical for me. The last month took me to hot and humid Mexico for a week where all aches and pains mysteriously faded. Then I got a moderately intense but long, 2 week case of traveler's diarrhea. Somehow despite that I've leveled out emotionally and feel more like pre PMR me than since my diagnosis in Dec. 2016.
There would normally be a spike of cortisol in late afternoon - if that isn't happening, it would account for early evening wobbles!
Yes, I do think that had been missing. I'm cautiously optimistic that something has improved.
I've also been on a low sugar and low carb diet since starting Pred....with the turistas, aka Montezuma's revenge, aka traveler's diarrhea, I was on a very high carb diet for two weeks since e that was all I could keep in. Toast and Gatorade lower sugar was my diet. I wonder if that had something to do with the shift.
WAS it Montezuma's revenge? Not overdoing it and a lack of cortisol? Just wondering...
I had issue with reducing below 6mg. After long use of steroids, adrenals are not functioning and need time.. I have spent more then 6 months at 5mg before I tried reduction. There is no rush and it makes no sense to relentlessly force the reduction to zero. You are looking for lowest dose that properly manages symptoms. In your case, maybe a bit higher dose is appropriate ( 5.5 or 6)... It does not mean that you will not be able to reduce dose, just not yet.
"My Dr said there would be no problem with adrenal withdrawal "
And how does HE know? Has he ever done it? How many patients has he had who have been on long term reducing pred? What a very silly comment!
The former head of medicine at the local hospital told me he has never met a patient who wasn't able to get off pred PROVIDING THEY REDUCED SLOWLY ENOUGH. That was his experience and he was quite surprised when I told him that on the forums I have "met" about half a dozen PMR/GCA patients whose adrenal function did not return fully. Most have some adrenal function but not enough for them to function really well - under stress for example. It is more common than they think. And even without a level of adrenal function that requires treatment, the process of getting there can be trying to say the least.
I got to 5mg a few years ago and was fine - 4mg was OK, 3.5mg wasn't. I was wading through treacle! Then I had a flare so the question didn't arise. This year I got to 7mg - and was wading through treacle again. Because of another problem I did go back up for a few months but am on the way down again. Just got to 8mg - and so far OK! But who knows what will happen at 7mg?
And Mr Doctor - until you have experienced the fatigue of autoimmune disease and added on the fatigue of your adrenal glands needing to wake up: please DON'T say there will be "no problems".
Hi PMRpro, question: when you got to 5mg a few years ago, were you reducing by 1mg or by .5mg?
P.S. What is treacle?
Thank you, Diane
Probably Syrup if you’re in North America!
Haha I always thought it was some kind of custard.
Treacle=molasses.
Do you have corn syrup? Or similar? Just a thick form of liquid honey
Oh yes, I'm sure we have every kind of sweet stuff going. I avoid corn in all forms these days as it's nearly all GMO, as is soy, unless specifically told it's non-GMO. We use cane sugar, organic when I can get it, and maple syrup, and there's honey on hand for hubby who uses it on bread, which I don't eat, but they all last forever.... GMOs do not have to be labelled as such in either US or Canada, to the chagrin of most consumers and glee of Monsanto etc, as I think something like 70% of people say they would avoid GMOs. Surprised it's not higher, actually, but public can be disturbingly ill-informed about some things.
As we’re in the EU at the moment, GMO is a no, no! But what will happen when we get out, if we ever do that is, wno knows!
Or molasses? Something thick and sticky that impedes your progress...
I can only reduce by 1mg at a time as I use Lodotra/Rayos which come in 5, 2 and 1mg tablets and have a special coating so cannot be cut. That was the main reason I developed the Dead Slow approach to reducing - and when I was later "at 3.5mg" I was alternating 4 and 3mg doses.
PMRpro, I was going to start another thread, but have a related question and this discussion is becoming a great source of information.
My question is this...have you ever heard of a person suffering adrenal crisis while reducing on the DSNS regime? I ask because I'm attempting a drop from 10 to 9.5 mg and have had the usual problems with fatigue, often debilitating at the beginning. I'm now on the third day at the low dose and had a huge drop in blood pressure this morning (102/58) after returning from a small grocery shop. It lasted about 2 hours. I've since had a bite to eat and BP is now returning to the low side of normal for me (120/65 vs 135/75). As you know, I question my absorption rate of prednisone and goodness knows what quantity I'm actually taking in at this point. I have a few other symptoms of adrenal fatigue such as occasional hot flashes (new to me in four years), foggy brain, trouble concentrating, the dreaded treacle walk , but these are not unusual for PMR.
Theoretically it is possible to suffer an adrenal crisis at ANY time when you are on pred - hence the recommendation to carry a steroid card at all times. The adrenal glands are unable to respond with a surge of cortisol if you are under stress of any sort. Though I'd really not equate an expedition to the corner shop with high stress!! On second thoughts...
The conclusions of this study
academic.oup.com/jcem/artic...
"1) Adrenal insufficiency after discontinuation of glucocorticoid occurs frequently; 2) there is no administration form, dosing, treatment duration, or underlying disease for which adrenal insufficiency can be excluded with certainty, although higher dose and longer use give the highest risk; 3) the threshold to test corticosteroid users for adrenal insufficiency should be low in clinical practice, especially for those patients with nonspecific symptoms after cessation."
suggest our doctors should be far more aware as we reduce - and should not assume we are fine until we are entirely off steroids. And as you say - how much are you absorbing? Probably not as much as many other patients.
Thanks Eileen. Another dilemma, now I have to decided whether to continue with the drop or not.🧐😟 I have an appointment with an Endocrinologist in October, but that's a ways away. Who knows it s/he'll be of use anyway. Have an appointment with my GP tomorrow. I'll mention it to her, but again I don't expect informed advice there either.
In the UK I would suggest a 999 call if you had such a drop in BP again - paramedics are taught to assess such situations in steroid-dependent patients. Not sure how it works in Canada.
5 mg seems to be the magic #! I’m on 2nd week of decrease from 6 to 5 using DL’s method and have had occasional PMR pain in wrists and knees. I run out of gas around 4:00 pm. The week I started the decrease my CRP was 10.5... 4.9 was considered top of the normal range from this lab. Last weekend my sister and I took care of my 95 year old mother who’s memory and strength are declining. Stress def affects PMR. Monday I leave for Nantucket so hopefully I will be OK. At this point, I will probably stay on 5 a few weeks longer then usual before attempting next decrease.
Not sure about starting a reduction when the CRP is high - unless yours is ALWAYS high.
I started the reduction, took the blood test and Dr. reported the results when I was in week 2 of decrease. She said to continue with the reduction, repeat blood work when I return from Nantucket next week, to determine course of action. My markers have been normal.
Are you able to reduce by 0.5mg at this stage? Pill-cutter required! (about 10% of your 6mg dose.)
Thanks for the suggestion. I always feel less than great the 2nd week of a taper. Things improve in week 3. I’m ready for anything since I have options from forum friends!
I am lucky and have 2.5mg tabs, so until I get to that level should be able to adjust per half a mg ..... so dont have to worry just yet.
I don't think Sandy and others in the US can get 2.5mg tablets, but I may be wrong. We're lucky in the UK - I have the 2.5mg gastro-resistant tablets, and the 1mg and 5mg too, but these can't be cut. We're OK until we get to 1.5mg! (Then we can get the plain 1mg tablets to cut in half.)
I have had difficulty with fatigue at different points in my journey. It's important to just "go with the flow" as much as you can, rest instead of trying to push through it. During those times, I could usually get through most of the day but struggled to make dinner or do anything from late afternoon on. By the end of the week I just collapsed on the couch. It was frustrating but it would pass after a bit.
"...no problems with adrenal withdrawal..." I wish! A few days ago at what would have been my suppertime I collected my son and we drove to the mall where I went on a short errand and he bought some things he needed. We came straight home. Supper was mostly ready but I felt awful. I gave myself a helping on the smallest plate and picked at it slowly until I started to come round. I felt slightly nauseated and all I wanted to do really was lie down and sleep. Felt better after eating the tiny helping but didn't want any more. Then yesterday I had a bunch of not particularly arduous things to do and was struggling to complete the tasks. This has happened since I started dead slow taper to 1.5 from 2. There's no increase in PMR symptoms as such, but it's not very pleasant to be smacked with Deathly Fatigue literally years after I thought I'd left it behind, and I have to say I felt worse with it than I ever did before. This didn't happen when I reduced to 1.5 last year. Are we more likely to have this sort of reaction the longer we've been on pred, even below the physiologic dose?
You've explained my situation exactly!! I have previously been down to 3mg for 17 months, then had a flare following a minor procedure and upped to 5mg, that was April this year and CANNOT reduce - I tried 1 mg at first, (Rheumie advice) and had the worst symptoms I've ever experienced - just like going cold turkey they were so bad - stayed on the 5mg for another month then started a .5 reduction once weekly, 3 weeks before 2 days reduction weekly, another 2 weeks then 3 days reduction weekly, then I got clever as I felt 'normal' and was able to reduce every day with no side effects whatsoever, so viola was on 4.5mg and had no symptoms - until 3 days following - started gradually with all classic GCA symptoms mainly so stayed put and it's still trying to settle, now 3 weeks later, I know I should go back to 5mg but each day I think it's getting better, am I'm kidding myself? I feel nauseous, put it down to the heat, still got the other symptoms too but no worse. I then had physio for hip pain and the gentle exercises he gave me, that I could only do on the bed, seem to have made things worse or is it coincidence, my head neck and shoulders are so painful and generally I feel awful, cannot think clearly and - only reading other comments associated them with me ie the afternoon 'don't want to do anything' syndrome - do I need to get a synacthen test? Because I've got to 3mg previously I just assumed I could do it again. Question is will it gradually settle down just staying put or do I (reluctantly) go up to 5mg again? I've never felt this ill for so long and blame other reasons all the time...
Hence your last question I am now asking...answers on a postcard please....
Ooooh - that sounds a horrible reaction. I can well relate - I've been finding it very difficult to reduce further on the lower levels of pred. I was taken off it last year by my rheumy - way too early (was only circa 12/14 months on it - and honestly it was absolutely disastrous - I literally could not function - couldn't walk - I was in agony - couldn't even dry myself after a shower - my arms were so painful and weak - had to crawl my fingers across the desk in work to try answer the phone. But the rheumy insisted I was fine and told me to "get moving"!!!! The fatigue was beyond bearable. She had finished me after the last down to 2.5 every second day for 6 weeks and told me to STOP then. My GP allowed me to go back on it - on the understanding that I was to reduce ASAP - but its not working out so good that way - starting a reduction now from 4mg - alternating 3.5mg for a month and see how that goes. Depending on the mood my GP is in - she gives me the prescription - so at the moment I have a decent prescription to keep myself going - hopefully downward - for a few months. I dread to think what state my adrenals were in a few months ago when the rheumy took me off it so quick. Needless to say if I have to go back to a rheumy - it wont be that one! I do fear will I ever be right - like a lot of us here - but you don't need the stress and pressure of the fear of not having the pred - what on earth would we do - do they expect us to just lie in the bed? Sorry - longer answer than I intended!! I wish you the best - maybe you need to go slightly back up for another while?
Oh dear, it sounds like your rheumatologist has really messed you up. Why is the GP so anxious to get you off pred asap? Don't they understand that a very low level of pred, which is all a lot of us need to control PMR symptoms if the taper has been sensible, causes very few if any side effects, but gives us a decent quality of life? It makes no sense to prescribe something, which is the only effective medication, and then insist we stop taking it while the disease is still active. Meanwhile the medication itself has given us the additional problem of adrenal suppression. If we are going to be treated that way, better not to take pred at all and at least keep the adrenals functioning. I'm glad my doctor has been a lot better, although one can tell she's nervous about pred, too. I'm going to keep on tapering, but extremely slowly, because I don't think it helps nudge the adrenals awake to keep on supplying artificial cortisol.
I'd say she's nervous because the Rheumy took me off it. I mean I was in her office at the beginning of all this begging for something else - anything but steroids - and I was told nothing else works - so I don't know why she would think I actually want to stay on the stuff - sad fact is the PMR was in no way gone after 12 months when the consultant took me off the pred - I don't know what planet she is on. So depending on the mood of my GP - I either get a major lecture about getting off it and her "going to send me to another Rheumy" or she does the prescription a bit more quietly - with her getting assurance from me that I am reducing!! So for the moment at least I can function! Who'd have thought at the beginng of all this - we'd find ourselves in this constant battle with medical people. There is just no definitive protocol - they all seem to have their own approach and luck of the draw who you end up with.
I have found it is never worth sitting out the pain. Better to bite the bullet and go back to a dose where you are comfortable. You will feel so much better and you can always reduce again when things improve. I know how depressing it is having to increase your dose but it is worth it to reduce the pain.
Thanks for that. Just had to increase from 6 as I can't get out of bed in the morning. I thought I was ready to reduce (again) to 5 and here I am back at 8. Had had it the other day and took an extra 5 and then reduced by one a day until back down to 6. That told me everything. By 7 per day, I was very uncomfortable and, by 6, I was back to both shoulders and hips screaming by 4 a.m. So, 8 it is until I can really say things have been stable long enough to try again. I would have been more certain about having to increase, but I'm having piriformis and hamstring problems on my left side and that is muddying the water a lot. Anyway, thanks for the boost - I needed to hear that.
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