Triggered by another thread, I’m wondering about our start doses of pred for PMR and whether a higher dose initially gains a better long term result. What do you think?
And that lead my thoughts to men (!) I often see comments that men have a smoother journey. I don’t know if that’s true, what do you chaps think? Do men start on higher doses?
And if you could bear to share your weight at the start of your pred? I’m sure weight and dose should be connected.
And say if you’re male or female?
Aren’t I nosey 🤥
I’ll start: Female, started on 20mg, weighed around 10st7lbs AFAICR as I’d lost some weight.
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I have thought that too occasionally - like a big zap dose like 30 mgs.
I weighed around the same as you and 20 mgs dealt with all the symptoms within two days. I only ran into difficulties when I arrived at 7 mgs and everything started to go pear shaped. I am on 5.5 mgs under false pretenses really, I feel awful.
I started at 20mg, I weighed 113 lbs.In April 2017,I am now at 7mg and weigh 119 lbs now. I have tried to get past 7 mg but always have a flare and go back to 10 mg.Now I am staying on 7 mg for 5- 6 weeks and than going to 6 1/2 for the same length of time.I als started CBD oil in the evening 11mg and seem to get through the night without pain.Watching carbs !!Hope I can get To 5mg and my doctor will be happy She is letting me to do it my speed.
Bailey, you’re mirroring me, I started at 20mg April 2017. I got stuck at 8mg last summer, rheumi was not happy! But when I finally got to 7, the drop to 6 was relatively smooth. So keep the faith 🤞 Dropping to 5 seems impossible, so am going via 5.5 and it seems to be working (shhhh 🤫 don’t tempt fate!)
I think we have to remember that PMR does not reduce in a nice straight descending pattern, but waves about in a generally (but not always) downward fashion. Plus we’re entering the ‘adrenal zone’ (sounds like Hammer House of Horrors!)
I don’t think my GP has a clue where I am on my pred reduction, because I don’t go near if I can help it! 2 flares, 1 courtesy of GP, 1 courtesy of rheumi, I’m now doing it Frank Sinatra style (My way 😉)
Con’t -It didn’t work.She would like me to get down to 5 which has less side effects.I have osteoporosis which doesn’t help.I said I would rather have quality of life than quantity! Yesterday, I had to get a cortazone shot for a tear in a miniscus!
Always something ! I am 77, I don’t know How age effects PMR.
I’m not sure that age necessarily affects PMR (except possibly those of us in the younger group more likely NOT having raised ESR/CRP, which makes diagnosis delayed). However with age come co-morbidities, and they probably complicate things, difficult to distinguish one pain from another.
I'm not an expert on symptoms when reducing, but it sounds so familiar. Mornings are horrible, but it does get better. Probably we have withdrawal symptoms.
Feel well lass, and know no pain no gain. ( that's what I tell myself. )👍
☹️ Sorry you feel so bad. Don’t you sometimes think it would be nice to have a great big zapping dose, just for a couple of days, to just get a break?
If I were you and due to go travelling, I’d go back to 7 and enjoy my holiday, they’re too infrequent to spoil. Then try reducing when you get back, it might be plain sailing next time?
That’s what I would normally do, but since the Endocrinologist input, I am worried about killing my poor shrivelled Adrenals off altogether. I always feel much worse after doctors’ input. I putter along quite nicely on my own. I kind of wish that I had never asked for a Synacthen Test, I think I was at too high a dose for it to be a true indicator and yet it is influencing all my treatment now. I guess most of us on 6 or 7 mgs would show a sluggish natural Cortisol production. I should have stayed under the radar. I was sooo tired though.
I was very tired at 7 mg. Then things improved. But after a flare about 20 months ago and a short up to 7 mg from 1.5 mg I seem to be suffering more from fatigue than I did before. I do blame that increase in pred, but it seems odd. Why would that short term increase have had so much effect? Have never had a synacthen test, but I note my doctor put several extra things on the latest blood test requisition form, electrolytes and thyroid function, so I suppose she'll follow up if anything shows up. Given your experience I think I'll try to stay under the radar.
GP gave me a 'zapping' dose in Feb courtesy of a chest infection! The PMR vanished immediately!!! unfortunately it did not stay away when I reduced again as you can imagine!!!
You’re right Baileyw06. I am trying to encourage Adrenal function but I am not doing a long-haul flight feeling like this. It’snot So much pain as just blerg! For want of a better description. What they used to call general debility.
It’s probably because most drug trials are tested on men. So we ‘little ladies’ have to fall in with medical guidelines. I think the gender issue is gradually being recognised.
Started a 7 day trial, took the first dose and the pain was gone by the next morning.
2 years later and am going for 4.5 with the simple taper, I have added an extra week at the new level. I do have some shoulder and arm pain, but nothing I'm worried about. If I feel it's a bit much I keep a pack of 1mg uncoated in work so will pop one, only done that once.
I've had 2 flares, first I went from 5 up to 9 and the second I went from 5 up to 7 tapering to 6.5.
I started at 20 for 3 days I think it was, I had relief in 6 hours. Then told to drop to 15. PMR crept back, so after a ‘discussion’ with my GP I went back up to 20. And I’m only about 60% of your weight!
I’m not far behind you though, going for 5.5, nearly there. Have also had 2 flares, and yes I too take an occasional mg if the going gets too tough.
I too was taking coated pred at 10pmish, have now had a few days taking it in the morning and I’m not liking this morning pain/stiffness, reminds me I have PMR! Might go back to evenings.
One big difference is that I have been unable to work. Just too tired and unpredictable to be reliable! 18 months in, I started taking foreign language students, up to 4 teenage boys at a time (am I mad?) As they’re at school all day I can go back to bed in the day if I wish, and actually it’s quite enjoyable having youngsters around again 🙃
I was about to ask my rheumi a similar question on tomorrow. I am just trialing a week of 15mg pred to validate my diagnosis. Within 3 days my symptoms had virtually gone and I am left wondering if I needed such a large initial dose. Does anyone know what happens if I stop taking pred after 1 week to give my body a break but then go back on in say 2 weeks but on a lower dose. I fully expect my symptoms to come back in period that I stop the pred but can you 'yo yo' on pred at beginning if my body not yet reliant? Forgot to say weight is 11.6
For some things -like asthma and other problems - you can take steroids short term (less than 3weeks and your body doesn’t become reliant) and come off without a problem. I’ve just done that recently for 5 days.
All that will happen to you is a return of symptoms - it usually takes a few weeks for the initial dose to get a grip of the built up inflammation. Then you reduce in a timely manner to find the level you need on a daily basis.
You could start a taper as soon as you feel ready. We have to remember that Prednisalone is not a cure, it just deals with the inflammation and the subsequent pain and stiffness. I luxuriated in the relief of symptoms for about 6 weeks then began to taper down quite successfully with no flares. I think your idea would plunge you back into your original symptoms that might be harder to bring under control a second time. You still have a significant illness and are at the minimum start dose.
Don’t just stop! You might find that when you restart that you need more than 15 to get in control again. Ideally we start on a bit much, then reduce to find the level that equates to the PMR. I’d advise that you enjoy feeling well for a bit on 15. I’m sure your rheumi will talk about reducing tomorrow.
However - once that happened to me, I had been fine at 5mg, it took 15mg to get it under control and I have never successfully got down to 5mg for more than a short time since.
7 years with PMR, started at 15mg, told to get off quick, hence the very bumpy journey, weighed 10st 7 at start. Went up to 11 st, 3, lost weight when told prediabetic (low carb) now steady and happy at 10st.....recently told have gall bladder problems, so appetite isn`t as good, but tolerable. Now at 8mg, I always stay settled at a dose for at least 2 months, I react to any small change in dose....but will soon try a 0.5mg drop again soon...
Dread getting to 7mg, with the problems with adrenals I have read on here!
7 years seems like a long time. I’m hoping to be off pred by the time I’m 60, I started at 56. But we shall see. I think that’s one of the hardest things to accept, no one knows precisely how long their particular piece of string is.
Yes, I have been messed around by two rheumies and their differing theories, and now GP leaves it to me.....
You are right, I think sometimes it must be coming to the end soon......after 7 years, but PMRpro has had it longer than me, and she has the knowledge!
Have just ring appointments at NHS to be seen for build up of stones in gallbladder, she said you will probably have to wait about 13 weeks!....😕 could do without all the "extras"going on....but heyho, if it worsens will have to be demanding methinks!......
I apparently have them (incidental finding on CT scan) I get occasional pain (fish and chips from the chippie has had to be given up due to pain all night) but hubby has ‘sludge’ and I’ve called an ambulance twice for him due to extreme pain and ‘blue gills’. Our old GP wanted to refer him to the surgeons, but new GP won’t!
Yes, it's sludge....stopped the Adcal, and stomach pain has eased a bit, but have nausea and acid feeling, bloating most of the time.....tolerable for now. What do paramedics do when called out?
They whipped him off to hospital both times, because of his colour and ‘chest’ pain they don’t take chances. Pain relief and home again. I think they did cardiac enzymes once and wanted to admit him, but he declined! He said it wasn’t his heart!
Male - 72 years old, Started about a year ago on 30mgs Pred. Now down to 9 - reducing to 8mgs. Gone fairly smoothly. Weight has stayed about the same throughout at just over 12st.
I think male!!When ,I was having problems decreasing pred,my doctor said I was the first person having problems.When she checke, I was the first female! I gave her the information from HealthUnlocked and her whole attitude changed.
Or they still carry on doing the physical things that make the PMR symptoms worse (housework I'm looking at you!) whereas men with PMR have often been retired or unable to continue with their jobs. Men who have to continue to work in strenuous jobs often struggle - and people who have to work in general often need higher doses than their doctors would like.
Yes, best to keep to the ‘no more than 10% reduction’. And a 1mg drop from 9 is more.
Women more sensitive to their bodies? Don’t know. It does seem that quite a few males continue to exercise in a way that I simply could not (unless I’d stayed on 15-20mg) But I don’t think I was ‘sensitive’, my body simply screams STOP! And stops!
Hello Soraya, I started on 20mg predict and was about 13 1/2 stone that was 7 years ago been up and down several times now on 6mm it's along haul don't give up. Cheers Paul
Well does the exception prove the rule? You’ve clearly not had an easy short run of it Paul! Does it irritate you that the oft quoted ‘men tend to have an easier journey’ clearly doesn’t apply?
The thing That irritates me the most is most medical people I have seen have no idea how PMR affects the patient,some do but they seem to be the minority. At Northampton Hospital the specialist I saw had no clue at all. His nurse was much better, but how it works in the medical profession is the nurse just looks at the ceiling and keeps quiet when rubbish is talked. Re men versus women suffering I have no idea who suffers the most its probably the same.
I was a ‘gobby’ nurse. I was always compelled to advocate for my patients. Got me into trouble, but when the ‘evidence’ was discussed, I occasionally got an apology (even from consultants!)
But yes it’s infuriating when the ‘medical experts’ know less than some experts on this forum, and have no idea how PMR (and many other diseases) actually impact upon lives.
I can add the benefit agency into that. Empathy at face to face interviews does not translate to the faceless decision makers. If I’m in pain I should get some pain killers apparently! No matter, they didn’t pay me a bean for being unable to work, but I got through.
Hi Soraya - an interesting question you raise - there do seem to be many more women than us men, on the forum who’ve been dealing with PMR over a long period of time.
I was diagnosed 3yrs ago, onset was quite sudden and pretty scary, being totally debilitating after being (I thought!) reasonably fit. Initial dose of 15mg didn’t seem to have much effect after 2 weeks so the daily dose was increased to 20mg - this enabled me to return to work after another couple of weeks. I’ve taken a very slow taper plan and am currently on 2mg per day. (like many others, I initially and mistakenly, thought a few weeks of Pred would see the back of PMR....!). I have to say that my weight has stayed around the 15st mark and I don’t think the steroids increased my appetite significantly. My wife’s ‘Slimming World’ regime has contributed as well to both of us keeping to a healthier diet - I do like all the ‘beige’ foods that would otherwise make me gain weight..... We Joined a walking group - only every fortnight, 5miles no problem and I’ve been coerced - I mean encouraged - to go to Pilates once a week......
I hope to get down to zero mg but am prepared to take it slowly - that means getting a pill-cutter now!
An inspiring story. The extra things you do to support your physical and mental health are key as well I think. I haven’t done enough since my daughter and grandchildren went to Australia.
Hmmm - that might well leave you a bit de-motivated. Fatigue is a factor too - I have put off doing various projects (my stepladder fall dented my confidence a bit too !) But - I’ve recently emptied my storage unit (can’t believe how much money was wasted there😩) - okay, had to hire help, couldn’t manage alone - but now forced to re-organise and built a tall shelving unit from scratch. Took me 2 days & I did feel kn*ckered afterwards but you can get much of your old life back - eventually...!
Maybe if I’d stayed at 20mg I might have been able to work, but after 2 doctor created flares, I haven’t been able to go back. The stress of my job (in Social Services) was probably a contributory factor in my illness anyway. It makes me shudder to even think about going back!
I’d lost about 10lbs pre diagnosis, which to me was very concerning, and I tried to gain weight pre pred, without an appetite was very difficult. However from 20 to 15mg my appetite was a joy and I replaced my lost weight and a bit more. Now I’m down to 6ish, the weight loss has to be avoided, just the way I’m made. I’ve enjoyed having a few extra curves 😉 and am trying to maintain them!
I’m now in pill cutting zone, I pinched my dog’s pill cutter. (She has Cushings, too much cortisol, her appetite is insatiable!)
I don’t think our experiences have been too dissimilar, I’m at 2 years, maybe in 12 months I’ll be down to 2mg?
And a recent 5 mile walk made my thighs sing for over a week!
Haha! Well it sounds as if you’re getting there and no real need to rush. I found that the really keen walkers liked to maintain a brisk pace but are happy to slow down a bit so that we all get something out of it. Now the Pilates.... the Italian lady instructor has a sadistic streak, I think - ‘listen up everyone - not you Nigel, you carry on doing 50 more of the last exercise’.....🤣
Make 62 started on 30 but after a few days 20 but not enough. Self prescribed back to 25 and stayed there six weeks. After about six months down to 11 relatively smoothly. I go back up to previous dose if any less comfort after 9 -11 days after reduction. At start was about 86kg now 72kg. Low carb as pre diabetic. Found weight reduction relative easy on low carb as not hungry on low carb/ pred.
I think a high dose at start gives males an advantage but what do I know.
Male age 65 weight 92Kg (202lb) height 6ft 2 ½ ( 1.9M )
PMR starting dose 20mg 4 hours later OK. No problem tapering to 8mg I just didn't know when to stop tapering it was almost too easy to taper, little if any side effects at all.
Now have GCA as well started on 60mg. Side effect insomnia for first few weeks and
You will love this. I found lots of things funny even the Biopsy operation it was kind of fun !
Now almost like I'm not on Pred at all. From my last experience of being on 20mg and tapering
I doubt I will have any issues tapering from 60 to 20mg . After that I think it will be more difficult to go back to 8mg and below this time.
I am of course aware I may end up on a bit of Pred ( 5mg ish ) for life but heck who cares. The body makes about that much anyway if its working right.
Male 61 diagnosed PMR 15 months ago and started on 15mg. Now down to 2.5mg. Weight remained static at 11st 8 lb. Think I've had a fairly easy ride compared to some members as I've continued working in a fairly physical job.
Occasionally stressful. I work in live events so a lot of flightcase pushing and ladder climbing. I couldn't have continued before pred but have not struggled since taking it.
I couldn’t manage ladders. Couldn’t have managed before PMR either! Useless at heights me, getting worse as I get older. I even shy away from films if there’s high camera work on edges of buildings or cliffs.
Interesting question, and one I have sometimes wondered about.
I am male, and was diagnosed in December 2014. I weigh just under 12 stone, and have kept my weight the same all the way through.
I was started on 20 mg, and upped to 30mg within a week to knock the pain on the head. That worked.
Since then, I have tapered down to 2.5mg. It was relatively straightforward down to 10mg (that took 6 months). However, subsequently progress has been slow. Got to 5mg in April 17 - two years on, and very nearly another two years to get to where I am now.
Have I had it easier than a woman? Who knows? My experience has been fairly straightforward, and without any flares, though I have, on occasions, increased the pred by one or two mg when I have felt it necessary to do so.
It seems to me that many of our female sufferers do have other ongoing issues, which I'm sure makes matters worse.
I reckon that at present rate, I could be somewhere near zero in the average time of just under six years. It helps to reduce expectation, and just to accept where you are, plus lots of patience!!!
Well you got a good starting dose at 30, and your initial drop was speedy.
I think you’re right about acceptance, and you’re on track to the 6 year mean average. It would help if they told us 6 years at the outset wouldn’t it? Rather than 2 years.
Reducing expectation....that applies to the doctors as well as us! Did your doc just let you reduce as able? Or did they interfere like mine did at the start? I wonder if there’s a gender difference in this aspect?
Thanks for your reply. I was lucky in that the GP who diagnosed my PMR - her mother has PMR. She told me most likely 2 years, maybe more, and could be chronic! So, I can't really complain.
I have been allowed to taper without any interference at all. The initial dose got my bloods back to normal, and I have had only one check since.
Almost all of what I have learned has been through this forum, which is excellent.
Cheers
Paddy
PS: forgot to tell you I was an active 74 when initially diagnosed, I had never heard of the condition before, and thought I was falling apart!
Yes, it certainly takes the pressure off. It's quite clear from the forum that far too many sufferers are being pressurised by GPs and Rheumies who don't clearly understand what PMR is all about.
My journey is different as my gp prescribed 15mg but left me on that dose until I was to see my rheumatologist 4 months later. My appt with rheum got put to a later date so gp started my taper 4 months after initially starting on pred. I was about 10 stone and had put on about a stone but doing WW diet has meant I have 6lb in 2 weeks.
My tapering is slow and has been left to me by both gp and rheumatologist. I cut from 15mg to 13.5 and then to 12.5 which is what I am on now. No probs with tapering so far.
That's what i thought. I went armed with reasons on why I should taper slowly and why I didnt want steroid sparers. Blearyeyed had helped with what info to take and i didnt need any of it. Plus gp had a letter from consultant within 36 hours of my appt!
I think the psychological relief (from not being pressured) is not to be underestimated. The fight with PMR is bad enough, without also being at odds with the docs.
Female 15mgs weighed far too much Sorry haven't got a clue about weight at start but had gone up a size in clothes due to ballooning with the inflammation. I lost weight initially taking pred due to reduction of inflammation, then gained it again due to pred munchies. I gain weight and pred face at 7.5mgs and lose it at 7mgs -weird.
I am in U.S., so maybe treatment is different. My physician, not rheumatoligist, put me on 40mg for 3 days, then drop to 20mg. (I was in a really bad way, had not slept for several nights) Several hours after first dose slept for 12 hours without waking. Through self tapering, I started on 4mg yesterday. I weighed 140lbs, would feel better, arthritis, if I could lose 10lb, but not worried about it at this time as I am pleased I have not gained more while on Prednisone. My last 3 tapers have been half an mg. I plan to stay on 4, as long as it works for me, for 10-14 days then drop to 3.5mg
I started Prednisone on December 12, 2018, female. This morning I went to the Nature Center to work for four hours, nothing really strenuous. My left hip was hurting, so my question was, is it inflammation in the muscle or in the joint, PMR or arthritis? In the course of the morning I did some stretching and came to conclusion that it is arthritis.
So, I will just do some more mild activity the rest of the day. (While typing this I am watching the hummingbirds competing for a place at the feeders.) A little later I will water the plants in the pots, but not do too much to-day. If it is a good morning to-morrow, not too cold or windy for me, I will take my dog, Lily to the park to let her run, while I walk along the river. In the meantime, I will stay on the 4mg of prednisone, hoping I don't have to increase and can go down another .5 soon. Maggie T
I changed from morning to split between morning and evening, now I am to morning and lunch time. I ignore physical discomfits, unless it is really debilitating pain, as I think the body just has to make natural adjustments to change. Have you thought about your actions the previous day or two, regarding your arms? I noticed some discomfit when carrying my garden pots from indoors out to the deck. This morning I have somewhat heavy legs, however, the last two days I've had a lot more activity because of lovely weather after wind and rain kept me indoors.
You have to look at it logically though: WHY would a higher starting dose make a difference in general? The pred has no effect on the actual disease process - all it is is the dishcloth mopping up the overspill of inflammation. A higher dose will do it quicker perhaps - but 75% of patients will achieve symptom relief in a month at 12.5mg. Smaller women did better than larger men in the study. But do YOU want to wait a month to be able to move? Or do YOU want to suffer high dose side effects if you don't need to?
The guidelines are that the lowest effective dose in the range 12.5 - 25mg/day should be used at initiation - and then tapered. So that takes the weight differences into consideration there and then: if 15mg is enough, you don't need more. If it isn't - you try more. Even if 25mg is where you start and only 15mg would have been enough - you will be able to taper realtively easily.
The titration of the dose, the slow taper to find what YOU personally need, also takes all of the variables into consideration: weight, gender, activity level, underlying activity of the autoimmune part of the disorder, bioavailability, duration of antiinflammatory efficacy. And probably a few more I haven't thought of.
I don’t know why a higher starting dose would make a difference. I don’t know that it does. I don’t think enough is known about the causes or ‘disease’ itself to be able to definitively say, either way. Maybe PMRwithcauseA responds better to more pred, but PMRB doesn’t? Maybe a super-clearout of inflammation to nil means the subsequent reduction works better; whereas a moderate-clear out to +1 inflammation hinders the reduction? Inflammation ALL gone, titrate down to YOUR ‘disease’ level quickly. Inflammation not quite cleared, reduction is slower and total pred dose might be higher?
I appreciate that higher doses could mask other causes and hinder diagnosis. But if 12.5 takes a month, that’s not helping the diagnostic ‘check’ of a quick response to pred. Personally I wouldn’t want to wait a month for control, there’s enough clouding around diagnosis without removing that ‘miracle’ response.
I don’t think for one moment that doctors take weight into consideration! There’s a very arbitrary dosing for start doses seen on this forum, from 40 down to ten, despite the guidelines.
‘If 15mg isn’t enough you try more’ is ok if you can get that past your GP! I know after my 3 days at 20 had worked the miracle, and I was instructed to drop to 15, it all came creeping back. My GP’s response “well you can’t have PMR then!”
Yes I agree the personal reduction schedules will take into account all of our ‘peculiarities’, and therefore will be very individual. But the starting point does seem to be somewhat of a lottery.
I think where we have problems is in tapering,I know at the beginning they tried to come down to fast.Also, if you had other problems they didn’t consider going slower .Once I got on the site and more educated I challenged the Dr. with information from your site and she read and listened.As she said as aprimary physician she treats so many conditions it is difficult to know everything about every condition.Also, it is the experience they have had with other patients.Hers were male PMR patients.
When I got diagnosed with PMR she gave me
the spread sheet from WebMD so I would understand what I had.
Your argument that higher dose zaps inflammation and therefore gives a better chance of successful tapering makes complete sense if there were no flares involved. It would certainly make for an interesting long term study.
Don't know if you you are in the UK but over fifty years ago a study called 7up, followed the lives of 7 children from all different backgrounds in UK. Every 7 years they filmed and aired a follow up of the 7 as they progressed with their lives. It was fascinating. Perhaps we could have a PMR UP study. Would have to be filmed over shorter intervals though since we are more likely to pop our clogs before providing required quantitive data!!! (Well.......I thought it was funny! ) Mark Benjamin is right. I am totally, utterly bonkers!
male, started @ 15mg 3 + years ago. Currently tapering from 2.5-->2.0. It took several days ( almost a week before my symptoms were taken care of).
I think the simple answer is that if initial dose is lower it takes longer to take care of accumulated inflammation. As far as weight it did not change and stayed between 71 and 72Kg (~160lb) with no special diet but with lots of exercise.
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