So, been on pred for about 10 months and down to 13 from 24. Was (still am?) an otherwise healthy and in shape 70 year old before the PMR diagnosis. Still have some morning pain and stiffness that pretty much goes away as the day goes on. Can still do most activities I like, such as go to the gym (light workout), wash my cars, go out with friends, etc.
What I would like to know from you men out there is how much, if at all, pred has changed your body. My only changes to date are a little more body hair, some weird pimples once in awhile, gained about 5 pounds, and some more fat around waist.
Men, based on your experiences, what kind of body changes have you experienced, and what can I expect as time goes on with this disease
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Manchild
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Losing hair on top, growing more on chest and legs, and small bumps on shoulders and upper arms. Weight has stayed about the same. Seldom have morning pain as mine usually occurs in the evening. I am 72 and was diagnosed with PMR the first part of 2014. However, had symptoms 6 months before being diagnosed. Actually, diagnosed myself. Went to rheumatologist and she agreed with me. Unfortunately, she knew next to nothing about treating PMR/GCA . I now have a new reumy.
My brother had PMR for more than 6yrs. He kept working as a farmer throughout and had several bad flares as a result. Farmers are not good resting or pacing!. He put on a lot of weight around his stomach all of which went when he stopped pred. I know he had raised blood pressure and severe gastric problems from pred but he didn't share any of his more intimate changes, not surprisingly!
I just turned 70 this year. I have had PMR since Nov 2015. While I may not be typical, here is my experience. I was in excellent shape since I was training for triathlon before being diagnosed with PMR. First several months were the hardest for me. I was struggling to get back mobility and needed help to even get out of bed. During that time I lost weight, but it all came back later when I started walks and light exercise. I went back to light to moderate training after couple of months or so, mostly biking and swimming.
Body changes - not much except that my skin became very thin and would bleed easily. Often after trimming bushes around the house, it looks like I had a fight with cats. Muscle strength came back after a year or so, endurance too. I did not lose hair and still needs thinning when I have haircut. Now that I am down to 2mg, it seems that I have lost some endurance and get tired more easily. That is about it..
Interestingly , just reading the posts , thinking these are mainly by Women , then yours pops up! ( No offence ladies, you do an admiral job) . Can’t say I ve noticed too many pimples, and always had a healthy body hair growth, so no changes there!.
Yep , have put on the poundage( all over!) .Wake up with stiff fingers and suffer with my shoulders, but i’m Getting there! Thanks to all these great motivators.I remember early doors being chastised on here for walking 16 lengths in a pool( boy did I suffer as a result). Now 6 months on swimming ( stop / start ) 16 .lengths.
Do get my flares , and fatigue attacks as a result , but hey ho....
I thought weight gain would be a bigger issue (no pun intended!). I just make sure I'm eating as healthily as possible and keeping off any unnecessary snacking. Most evident issue is acne breaking out across one eyebrow and on to my upper/side nose. Haven't had these since I was a teenager (which was quite some time ago). Things could be worse. I'm hoping even this will improve once I can reduce the steroids (now on 7/6 taper).
Same age, quite fit, exercise an hour for 5 or 4 days a weak. Been taking pred for at least 7 years. On 5 mg. Everytime I try to come off pred I have a massive flair up so now I don't even bother trying to reduce. Doctors are always pushing me to reduce and I won't do it.
I know my body and I know what I feel like, so if one day things are not quite right I dont exercise. Some days admittedly I feel tired other days I feel absolutely top of the world.
The side effects for me is weight, cant get it down and fat around the midrift won't move.
Tried every exercise you could think of and still it won't move. Look after my diet, dont over eat, have a few pints, glasses of wine maybe twice or 3 times a month. Doesn't stop me going to the restaurant with friends etc. I have decided that it is what it is and have to live with downside. I would rather have this than the down effects PMR which effect me quite badly without the pred.
(Aside from the usual add-ons with PMR and / or the Preds (e.g. Hip Bursitis, Costochondritis, unpredictable flares due to the heterogeneity of disease course, bouts of Deathly Fatigue, general malaise etc. I could go on...)
For me, physically / externally: weight loss about 2 stones despite eating well, although I was always of slim build. Loss of muscle tone, I suspect due to a combination the auto immune disease and being less active generally. Various minor skin infections & flu bugs, probably due to lowered immunity. No changes to body hair, no skin bruising or bleeds despite clanging around washing cars, doing DIY projects etc. Permanent, Pred induced menacing facial expression and propensity to get into unprovoked punch-ups (only joking).
What to expect as time goes on? I think the jury's out on this one (for men and women) as it seems that PMR and / or the Preds can affect people in quite different ways. Also, it has been suggested that PMR (and GCA) can come in different 'strains', duration and intensity / type of symptoms.
Either way, the general wisdom is to try to stay active but not to push yourself too hard physically, even when feeling ok / with symptoms under control: since the underlying PMR disease course is long term (i.e. 2-6 years) for many patients. And, of course, at a time in Life when many of us are naturally tending to slow down physically anyway. Either way, it helps to try to keep a positive outlook. 'This, too, will pass'.
Hope this helps you and us other Lads here...
'Uncle' MB
Age 62, active type, Dx PMR 2015, commenced 30 mgpd Pred, roller coaster journey down to current 3 mgpd +/-. A couple of periods at Pred Club Zero and feeling marvellous. Philosophy: 'Try to keep Smiling on the Journey'.
Regarding your second paragraph, I need it 5 times a day! (Jk)
67 to male. Relatively fit and active. I lost 14lbs and was diagnosed in March. Down to a 34 inch waist which is fine with me at 5 foot 8 inches. I do bruise easily and have to nap here and there. D
I'm almost exactly like you....a little puffy around the face, not a real moon face, get a few strange skin "things" whatever you would call them...dont know if thats just getting older or the pred or the PMR...ive gained a few pounds, nothing too bad, I also still exercise, walk, do most anything I want...mornings are when I have very little energy but I perk up as the day goes on...im on year two, started at 20mg and I'm currently at 5mg...tapering gets more difficult down on the lower mg's....after a year of this I just go with the flow, if I have a good day I do stuff if I'm feeling a bit down I lay back...also 70...this is not the worst thing in the world, although I was really pissed when I first got it and realized it wasn't going away in a month or two...im starting to lift weights again and thats not too bad..gotta get those muscles back somewhat...
Keep saying it would be great to hear more about the practical experience and changes that potentially relate to Men Only , or at least the universal symptoms that Men have.
It's really valuable to read on the forum , even as a woman, rather than your post being
" For Men Only " it's more like " about Men only " but will be really useful for us to be able to remember and tell new Male sufferers about in the future.
I titled the post “For Men Only” as I wanted to solicit as many responses as possible from fellow men suffers.
You ladies on here are great and more of you have the disease than us, but I feel the men may be under represented and probably don’t post as much as your lot.
Jeez, I am on here so much that I am beginning to lose my American lingo!
Similar to all comments above with respect to weight (except my gain was in kilos, not pounds!) - now starting to get rid of those as I come to the realisation that this condition is here for long as it wants, not for as long as I want (and I cannot fight it - you only end up failing - and getting frustrated). The increased calmness of mind is interesting and I feel in a better head-space that at anytime in the last three years. I think that is helping.
No sign of pimples but certainly had the thin skin - although that seems to be ok at the moment. Hair loss is ongoing but I cannot blame the PMR for that (or maybe I can).
Hunger is sometime insatiable - this laptop is looking tasty right now. Takes a heap of mental effort to control the desire to snack constantly.
Currently on 5mg after a brief foray into the club pred zero for two and a half weeks - I thought I was ok but was fooling myself - the pain was intense and back I went. I am more resigned to the situation now and the rheumy did mention on the last visit that I may have this for 'a long time' - ho hum - it is what it is.
Definitely more handsome as time goes by - but I better check on that observation with 'er indoors (a limey/pommie euphemism for the missus!!)
Hope you stay as well as possible and all the best from Down Under
Piers
(Male - 61yo - diagnosed PMR 2016 - started on 25mg - reduced to zero over three years - (with bumps and lumps along the way as I over did it) now on 5mg and working on 4mg if possible- still working (military) - but about to transfer to the Reserve - cannot maintain 5 days/week or deploy.
In one more month it'll be 3 years since I started living the "new normal" of life with PMR. I'm 64. Looking back I did have some warning signs of the PMR starting but ignored it for the most part until one morning I woke up and found my body had betrayed me. It took 4 months before I was diagnosed and less than 24 hours to discover there could be life again with prednisone.
I've always had very physical work. delivering all types of materials to sewer and water excavating contractors. It took 2 BIG flares for me to get the hint that I had to dial back the intensity of work or I was in trouble. I'm still working but have to be very careful balancing the work load, prednisone reduction rate and accepting that evenings are for resting before sleep, instead of taking on work projects at home. In order to keep working I have to rest as often as I can. A real lifestyle changer for me.
Like many, the tissue paper thin skin leaves me bleeding at the slightest bump or nick.
My sleeping pattern varies but is much better than at first. For the whole 2nd year I had trouble with numb hands and feet - as if they were partially asleep. As my pred dose has gone down (now 6/6.5 mg) so has the numbness. The hands are back to normal but all the toes and the ball of the feet stay numb 80-90% of the time. My toughest issue is the Deathly Exhaustion. I have a feeling that as long as I keep working and keep reducing the Prednisone dose, I will have to deal with the exhaustion from time to time. All things considered I consider myself very fortunate that I have relatively minimal side effects from prednisone. I shudder to think what life would be without Prednisone.
I miss my old life now and then, but am truly thankful that I can still do most things - just at probably 60% slower now.
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