I have been taking steroids since May/June 2021 and been tapering since. Currently transitioning from 4-3 mg based on a modified DSNS regime of 35 days. I have had twinges in all sorts of places for many months but not enough to make me want to up the dose. At present my heel bones hurt; and get discomfort from time to time in my knees, hamstrings behind knees, bottom (glutes), hips, back (but this is more likely to be a long term issue I have had since my twenties), shoulders/deltoids (I know this is odd but when I swallow a hot drink or burp I also get a very distinct twinge in my left shoulder as well - weird), neck (but could be a sternocleidomastoid issue as it is primarily left side and seems to be improving over time), fingers and thumbs (right thumb is the worst and all of the time), wrists. There is no logic or pattern to my twinges for instance a couple of months ago my left index finger was quite bad but as of today it is fine. I am twingier at 3 a.m. when I take my meds and a bit stiff in the morning and but improved once I get up. It also varies from day to day and throughout the day. If I sit for a period and get up it takes half a dozen steps to “loosen up”! I am active enough, can walk a few miles at a time, but don’t feel confident enough to return to golf. None of it make me scream in pain and I had put off increasing my dose as I can function OK but am not where I was pre PMR. I have a lack of energy but not deathly so and suffer from “brain fog” from time to time. Of course, it could all be down to “old age”!! PMRpro suggested I have a morning basal cortisol test done which came back at 218 nmol/L which is in the normal range and was also taken about 6 hours after Pred so may have been even higher if not for the meds (I wasn’t told to not take the meds – just to arrive at 9 a.m.). CRP was 2 mg/L and PV was 1.58 mPa, so all normal. FBC readings were also normal. I was hoping that when I got down to a lower dose that my adrenals may “take up the slack” (which may still happen – who knows?). When I read the issues that many are having with PMR at these levels of Pred I don’t think my issues are major. I have read that if you reduce your symptoms down to 20-30% of the original then that is a success and I am definitely within that tolerance. In the back of my mind is also a statement that the Rheumatologist said in October 2021 when she said that PMR can sometimes lead to Rheumatoid Arthritis and wonder whether I am on an early journey down that road. Question being is this my new “norm” which I can live with or should I up the dose to see what happens? I have never been totally clear of symptoms (shoulders always had a twinge but I did have problems with these pre PMR anyway). If it means upping the dose significantly then I would probably settle for what I have got. The alternative is to stick at 3 mgs for a while or carry on tapering according to my schedule and see what happens. A quandary….
Increase dose or accept where I am?: I have been... - PMRGCAuk
Increase dose or accept where I am?
As you’ve only been on Pred for about 15 months would say you may well have got as low as you can -for the moment anyway,
Does sound as if the combination of twinges may indicate that -but as you say some could be age related. Bit difficult to know sometimes.
As for adrenals “taking up the slack” -they will but it takes time, and it’s not like flicking a switch and bingo all systems go...
Mine took about 9 months whilst still on lower doses of Pred, and even then they can take up to a year when off steroids to be fully functioning. See link -
healthunlocked.com/pmrgcauk...
Would suggest sticking at 3mg for a few weeks/months and see how things pan out.
Prof Dasgupta once said in podcast he kept some of his patients st 2.5mg for a long time -sometimes for life (not suggesting that) -but what’s good enough for him…
“As for adrenals “taking up the slack” -they will but it takes time, and it’s not like flicking a switch and bingo all systems go...” DosetLady, or anyone else, do you know why the adrenals take so long to recover. I live on the assumption that it just is but would like to know why. It seems to be related to how long on Pred. (I’ve been on Pred for just over 2 1/2 years and currently on 2 1/2mg, tapering using your 5 week plan.)
Think you probably need a medical scientist like PMRpro to answer that.
I’m not sure it’s directly related to time on Pred, but obviously the longer the adrenals have bee been “resting/sleeping” however you want to phrase it, that would make sense.
Does the actual amount of Pred you’ve taken come into affect as well, some of us on high GCA doses might think so.
Mine stuttered along for about 9 months whilst tapering very slowly from 6mg down to 3mg -random fatigue mainly no other issues. SnazzyD who also had GCA seem to suffer a lot more and a lot longer with her adrenal recovery.
Like many things it may also depend on you personally… I’m fortunate in that I seem to recover quickly from most things -colds to major operations and everything in between -my late hubby always used to say I had the constitution of an ox - I’m sure he meant it in a nice way😉
So after all that waffle, you can see I don’t know the answer -but it’s passed time whilst I waited for the kettle to boil🤔
Will watch out for a proper answer.
Because it isn't a simple on/off single factor trigger. It involves the entire HPA axis (hypothalamus, pituitary, adrenal glands and the substances involved.
simplypsychology.org/hypoth....
Any one or more factors may be struggling and areas of the system "rusty" and not working effectively and until they have registered the signal, worked out how much is required - it all swings about a bit and can be a bit hit or miss. Age is also a factor and adrenal function does get less reliable with aging too.
Absolutely brilliant article from Simple Physiology. Thank you so much for sharing this.
Would it be possible to include it somehow in the faq section? Others would benefit I’m sure.
MrsNails - any chance of adding the link to the adrenals FAQ? By request ...
That cortisol may be misleading - pred crossreacts with the cortisol assay so it may well be falsely high.
Really it depends on whether the symptoms worsen over time while sticking at the same dose. If it were me I'd stick at 3mg for a bit and see what happens in the next few months.
The 70% improvement is usually a criterion right at the start of pred - did your symptoms improve that much reasonably quickly? If so, that is supporting evidence for it being PMR. In many cases things will improve even more over the followng few months.
I find if a painkiller helps your twinges, you can probably assume that they are not being caused by the PMR but something else such as osteo or just old age!! It helps identify what is causing the problems. If other painkillers do not work it is likely you are at too low a level and should up your dose a bit. You are pretty low currently so a small increase should not make much difference. You can go up say 5mg for a week or so, hit the PMR on the head and then reduce down again say in two steps, you don’t have to go through the very slow reduction if you reduce again in less than two weeks or so.
Many thanks for the comments. I have to decide tomorrow about my next meds cycle. I either carry on with my tapering regime from 3 to 2 mgs (DSNS over 35 days) , stick where I am for a while or increase from 3 to say 5/6mg. Yes, my symptoms were almost fully relieved at 25/30mg so it is almost definitely PMR. I have had these (recent) symptoms at doses much higher than 3mg and whilst they have got slightly worse, they by no means corollate to the to the reduction in pred (I would have expected them to be much worse given the reduction involved).
Q. Is the expectation to alleviate ALL symptoms and go back to where I was before PMR?
Q. The fact that I feel improved on some days more than others, could this mean that my adrenals are “stuttering”?
Q. Is it possible for the adrenal glands to (eventually) sort out these “twinges”
Q. If I should increase the dose to say 5/6mg how long for and how to reduce?
As I have had twinges and the odd aches and pains for quite some time (at quite high doses) I am tempted to start the next taper on Monday and if the symptoms do get materially worse then increase the dose to 5/6 and take it from there.
Is this strategy mad?
Pain that is relieved at as high as 25-30mg may not be PMR - the distinguishing factor that has become almost mythological is that 15-20mg leading to a better than 70% overall improvement in symptoms "diagnoses" PMR. It doesn't - but is a very significant stone in the wall of evidence for a diagnosis of PMR. Enough pred will deal with a lot of different sorts of joint and muscle inflammation - although there are some sorts of inflammation it doesn't work so well on.
No - you are unlikley to go back where you were pre-PMR as you are older and, inevitably, less fit that before. Even once off pred, it is felt to take at least a year before you are recovered, not just adrenal function.
Alternating good and bad days could have various reasons behind them - the most common is that on a good day you do more and get a bad day for your trouble. This forces you to rest - and you have a better day next day. Rinse and repeat! Try keeping an honest diary and see if there is a pattern.
Returning better adrenal function is only likely to sort out any twinges due to adrenal insufficiency - it can also cause aches and pains which are similar. If you had them at higher doses of pred - unlikely to magically disappear I would think.
If you were to increase the dose - depends how long for. Up to a couple of weeks you can drop straight back to the previous dose - or, better, just above the previous dose. OTOH - even over 35 days, 3 to 2 is pretty fast and 33% change in dose. Recommended is 10%. If it were me, I'd do 1/2mg and double the taper duration by repeating steps. It takes time for adrenal function to wake up - more than a month to learn to make that much more corticosteroid.
HI
Q. Is the expectation to alleviate ALL symptoms and go back to where I was before PMR?
A. If you mean current dose , then you should get the same relief as you did on initial dose..that may not be exactly as you were pre PMR -and probably unreasonable to expect .
Q. The fact that I feel improved on some days more than others, could this mean that my adrenals are “stuttering”?
A. Very likely
Q. Is it possible for the adrenal glands to (eventually) sort out these “twinges
A. Maybe -depends if twinges are adrenal related or PMR related (too low a dose of Pred)
Q. If I should increase the dose to say 5/6mg how long for and how to reduce?
A. See this link - contains advice on flares -adjust dose according to your circumstances -
healthunlocked.com/pmrgcauk...
Just one more comment -once you get back on track reduce by only 0,5mg a time, not 1mg - much better for PMR snd nudging adrenals
Hi. PMRpro suggested I keep a diary. I have kept a detailed spreadsheet from Day One and this is taken from that:
30/7/2021. Twinging shoulders (deltoids). Dose 25mg. Nothing major and shoulders were not great pre PMR. Discomfort has remained since but varies and can actually be relatively OK.
16/10/21. Triceps beginning to twinge. Dose 15mg. Did too much last week. Treated the new shed and cut the hedge. Discomfort has remained since but varies and can actually be relatively OK. Shoulders and triceps seem to be linked.
12/11/21. Thumbs aching. Dose 13.5mg. Mainly right thumb. Possible consequence of treating the shed? This is a worry as it seems to be getting worse. Slight swelling on lower joint but the discomfort is over both joints. Note that I badly dislocated right thumb lower joint when a child.
15/11/21. Hamstrings sore. Dose 13.5mg. May have done too much walking over last two days (4.5 miles each day). Discomfort has remained since but varies. Right side mainly and seems linked to buttocks/glutes/hips?
16/11/21. Wrists twinging. Dose 13.5mg. Mainly right wrist. Sometimes no discomfort at all. Other times it can be quite twingy.
28/1/22. Back stiff/sore. Dose 9mg. My back has been a problem since my twenties can’t decide if my back issues are PMR related. I prolapsed a disc in my twenties (squash) and my physio said that if I gave up squash I would seize up and when I gave up in my thirties I did just that. It eased when I took up golf a couple of years after but when I got PMR May 21 I stopped golf and my back stiffened up again. Not helped by (semi) prolapsing a disc again in February this year which compounded the problem. Now permanently semi stiff.
23/2/22. Stiff painful neck. Dose 8mg. Query if this is PMR? Could be a sternocleidomastoid problem? Mainly left side (but also some discomfort on right but not nearly as bad). Started after wife changed the pillows. Couldn’t turn my head to the left at it’s worse. I sleep on my left side. Eases through the day but gets worse again in the evening. Have gone back to old pillows! Seems to have eased last couple of months but still a problem. Get dull headache as well (mainly late evening).
21/3; 19/5; 24/5/2022. Walked the golf course. Dose 6/5mg. Felt pretty good so walked the golf course (5 miles) with a single club. Dead tired afterwards and don’t feel that I could do it now.
11/5/22. Painful heels. Dose 5.5mg Query if this is PMR? Could be Plantar Fasciilitis? If I stay off my feet they do not cause too much pain. Done nothing for last few days because of the heat and they feel easier. However, after being on my feet for any length of time or doing any sort of walking (my “normal” walk is 2.5 miles) they ache like hell!
4/6/22. Buttocks/glutes. Dose 4.5mg. Buttock/Glute area (hips?) uncomfortable. Bit of a struggle when getting out of a chair combined with hamstrings. OK once I get moving but still a problem and not improving.
11/4/22. Fingers twinging. Dose 6.5mg Mainly left index finger (since gotten better), but fingers twinge in the early hours but seem to be OK when I get up. Not nearly as bad as thumbs.
The upshot of this is total confusion (for me anyway)!! There doesn’t seem to be any pattern as PMRpro suggested. I have not carried on with the taper and stayed on 3mg for now in anticipation that things improve (been on 3mg for two weeks with another week planned so far) and that my adrenals contribute more? If I assume that my neck, heel and back problems are not PMR then do you think that I should stick on 3mgs even further and see how it goes or would it would be beneficial to go to 6/5 mgs (where I could walk the golf course) or “hit it” with 8mgs as DL attachment suggests? My inclination is always not take pills but as I am going down to the South of England on holiday for 3 weeks in September and Valencia, Spain in October, I want to have as much clarity of thought going forward before I consult my GP. Many thanks for your unlimited patience and advice.
I think I see a slight pattern - but you have to go back a long way to see it!!! You have a lifetime of back problems - like me. Having to give up Pilates didn't help mine! I think it is a myofascial pain syndrome link - it can exist in its own right but appears a lot alongside PMR and one expert thinks it is the underlying pathology of PMR. I agree with her.
Errrr - what does that mean (for me) and what do I do....?🤔😀🤔
It could account for some of the aches you feel. Sometimes you can improve it with a bit more oral pred - only you can assess that - but targeted physio/therapeutic massage works better for me. Hence my regret at not having Pilates here.
Myofascial pain syndrome is what leads to trigger points of hardened inflamed muscle fibres in larger muscles - which irritate the surrounding muscles and nerves. If you can identify them and get them worked on they should disperse - reducing the symptoms they are causing.
Could that explain the permanent tingling in the palms of my hands.. ??
OK. I have consulted the doc and upped the dose from 3 to 8mgs for the last two days. Symptoms have (slightly) improved and (hopefully) will improve a bit further. Agreed with doc to stay on this for 5-10 days (7 days planned) then go to 4mg, stay there for a week and if OK do a 39 day DSNS taper from 4 to 3 mgs. I can modify this if it is considered excessive (my GP basically agrees with whtever I propose). Any advice gratefully received (as usual)
If the symptoms haven't improved considerably - I doubt going back to 4mg and continuing a taper will work well.
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