I've had PMR symptoms since Dec, which was finally diagnosed in April. I've been on 20mg of pred since the beginning of April and mostly feel great. I'm running, biking, and actually took my kayak out to see if it would bother my shoulders, and it didn't. I'm a 68 year old male, who has always been active and in good shape. When I read all these chats about people who are tired all the time I wonder if I am normal or if I can expect things to get worse. Is it the pred or the PMR that cause the tiredness?. My energy level seems good. I feel a little more tired during the day, but it passes. Sometimes I do take a nap when I do feel really tired. Functioning pretty normally with some awareness of mild muscle issues.
Men very frequently experience PMR differently from women - and there are far fewer of them to boot. Not only do they differ in the PMR bit, but everyone differs in their response to pred, men or women. Bear in mind too that for most of the TATT people they are early in their journey and still trying to get their heads round things and adjust their doses. I'm not tired all the time - but like you I am also on a stable dose. Most people are in the process of changing doses and that, inevitably, affects how you feel. The slow reduciton with tiny steps also helps avoid that we have found but even so, it is a change.
The fatigue can be from the pred or it can be from the PMR - it's a side-effect of both but not everyone has it as badly as some people. Pred, however, at higher doses can lead to a surge of energy which many people think is great.
However - while you are obviously doing very well at 20mg I am surprised your doctor is happy to leave you there permanently. 20mg is the start of "high dose pred" and will be associated with more side effects in the long run. By now I would have expected you to have been set off on a reduction pathway to find the lowest dose that achieves the same result as your starting dose. In doing that, of course, you may find your energy flags a bit.
To a great extent it is a balance between the benefits of the pred - and the invisible side effects. Weight gain and all the other skin/hair effects are perceived by the patient to be worse than the unseen ones - you can't see your blood sugar level or cholesterol or bone density but they are just as real and far more risky in the long term.
I felt pretty good at 15mg - but staying at 15mg for the duration is not only riskier than finding a lower dose but you will also never find out if your PMR has gone away. It doesn't appear to have done so in 10 years - but 10 years at 15mg wouldn't have done me a lot of good. I'm at 5mg with a pretty good effect - another 10 years of that will do a lot less damage than 15mg would have done. This is something you need to consider for yourself and discuss with your doctors - you really shouldn't stick at 20mg however well you may feel on it.
someone has to be luckier than I. I've had a reasonable run so far. 3-4 months before diagnosis, a year of pred so far. From 20mg to 6mg currently. Your post reminds me of my first post. I considered myself lucky as I wasn't suffering as much as most, and still seem not to.
At 20mg pred I could leap tall buildings, or at least take stairs three at a time. A fairly rapid reduction to something more sensible. I'm either fooling myself or the pred side effects aren't noticeable at 6mg. Higher doses unacceptable to me. Mostly messing with my mind in my case, though also a very mild shingles bout. I noticed the side effects after about 3-4 months, which doesn't mean they weren't there earlier.
I maintain a balance between PMR symptoms, pred dose, and activity. Original symptoms were excruciating (screaming) pain in upper arms raised above shoulder level and stiffness / mild pain in groin / upper legs. The latter shortened my stride. I found a way of swimming, only reduced sight seeing trips a bit and used a bit more public transport (tired after half a day and lots of km and lots of vertical metres in mountains - we driving through Nepal / India). Now I can paint above my head, but only for half hour or so. I generally pace myself and do things in lots of small doses. An hour or so of whipper snippering in the garden is about enough rather than the couple of hours I used to manage. So then I do a bit of engineering work on my truck. Cycling is not a problem, a reasonable angle for my arms, and not as much leg movement as walking, but I haven't felt ready for the kayak - no chance at Christmas, but feeling more ready recently.
I've certainly lost some muscle tone and fitness in the last year. I could never run - not built for it - but walking up the 15 degree (steep) slope of our garden several times while gardening, without being too much out of breath and recovering quickly, is a useful benchmark. Not as before, but far from debilitated. But there is a limit, and if I overdo it I need a rest and ache the next day. I can do more than I could 6 months ago and need to rest less.
As Eileen says, it seems us males have an easier journey than the ladies. And then both the PMR and the Pred effect different people differently.
As the PMR subsides the need for preds will reduce. Also as
Eileen says, its a case of finding the minimal useful reducing dose. Different for all of us.
Hi Ingo,
I am a nearly 69 year old female (Birthday in August) and was diagnosed with PMR in Decmber 2013 and started on a dose of 20 mg prednisone. I have reduced to 5.5 mg successfully, but very slowly. I feel good. I use the rowing machine 3 x per week and row about 3.25 km each time, I also row a boat, do yoga and walk. I need 7-8 hours of sleep. I cannot nap, as I work full time.
I had been undiagnosed for nearly 4 months with the PMR ghastly pain and stiffness, and I was normally a very flexible, high energy, athletic person.
My skin is thinner and I bruise more easily. My blood tests show normal blood sugar, good cholesterol with LDL a little higher than in the past (I also eat a lot more cheese). Bone density is fine, still. Blood pressure normal.
Here are the things I do: avoid salt and sugar. Eat calcium rich food, few carbs and lots of veggies. Drink 2 liters of water per day. Try not to stress out and overdo things.
I think I am a lucky that things are going well.
ingo, Eileen has said most of it, and I totally agree with her concern at you being on the 20mg starting dose for as long as 9 weeks. The main aim after the starting dose has achieved control over the inflammation and your symptoms have improved is to start reducing slowly until you find the lowest dose that maintains that control. So, after a recommended period of 4-6 weeks at your starting dose, you should have been able to embark on your first reduction, say, between early to mid-May. The longer you remain at the high doses, the higher the risk of steroid-induced osteoporosis, diabetes, etc.
If you are someone who had raised ESR and CRP blood tests at diagnosis, then these repeat tests can be used, along with your symptoms, as a helpful guide before any reduction.
One other very important tip to bear in mind is that when you do reduce your dose, you would be wise to cut back on your high activity levels for a few days to give your body every chance to adapt to the new dose.
So, good luck with that first reduction.
I also bike, use to run but stopped for plantar fasciitis, swim, and am very active. I've had PMR since 2011, been treated since 2013. I'm currently on 5 mg of Pred. Scaled down twice from 15mg. I took it for a yr and got down to 0, and it came back. 5 mg seems to be working, so I'll stay there. Yes, I'm tired sometimes but I attribute that to my age. I'm 62
PMR was so bad before I was diagnosed, I couldn't do much of anything. I finally demanded a RA test and got diagnosed with PMR. I felt great when they got me on 15 mg. I cycled 33 mi just 2 days after getting on Pred. I have a 50 miler coming up.
I do have days where I have flares of hip pain but it seems to go away. I'm not sure when I will ever get off of Pred. . I don't seem to have any complications to it as many others do. I must say I do not have one person I know personally with PMR.
You probably don't know anyone with PMR as only about 1 in 1000 develope it. Funnily enough, I know 2 others with it. Strange, isn't it?
As of one year ago I to was a very active 74 year old male. I started at 30 mg and reduced down, reasonable quickly, to 10 mg (over 5 months), am now at 6 mg. During the whole of this time I felt great, except for the old twinge in my neck and shoulders BUT I have experienced fatigue and some 'brain fog' especially after starting a reduction, so I stick to the very slow and almost stop method so my body gets used to reducing better.
Like others have said, the level of prednisone can make it hard to know how you are really doing. I am a 63 yr old male who until 1+ years was extremely active running, biking etc..After some early ups and downs felt pretty good on prednisone and started being able to resume some more active exercise. However once I reduced the prednisone level below 10 found out wasn't doing as well as hoped. Stopped all significant activity and fatigue very easy but trying to find a balance of reducing prednisone level and still feeling good. Currently at 8 mg and believe I would probably "feel" better at 10 mg and possibly be more active but want to reduce the prednisone level as does my rheumy..Good luck on your journey.
Pred gave me excess energy in the beginning, it was only after the tapering, doc made me go down from 40 originally by 5 mg at a time over a period of six monhs and this proved to be far too fast, as many have experienced. Had I used Eileen's dead slow almost stop method I would probably be on a very low dose now. Instead I suffered a huge flare up and have had all the miserable tiredness others are suffering. It is a matter of management and far more needs to be understood by GPs who administer drugs and advice for this condition. It's a shame we don' t see participation by the doctors profession in this forum... I am sure they could see by the amount of very simmilar problems that something needs addressing !
when I first took Prednisolone for this I managed to get myself a full time managers job after one interview ... Kept at it for seven months successfully until the fast reduction caught up with me and rendered me worse than useless. Am 71 so even without PMR that was quite a feat !
It's really strange how so many of us were so active before PMR. Could there be a connection?
A lot of us find the fatigue more debilitating than the pain. We all want to rush off pred, but it never works! Pity the doctors and rheumatologists don't understand this illness?😠😠😠
I've noticed this in a lot of the posts I read too. It would be interesting to know if our high level of physical activity somehow made us more prone to PMR? It was nothing for me to go for an 8 mile hike in the mountains, then go kayaking for a couple of hours, then go for a 25 mi. bike ride. I've been very active my whole life, so the PMR was such a shock to me both mentally & physically, that it's turned my life upside down. I would love to find out if there is a corellation between activity & PMR.
Eileen, I'm not on 20mg permantly. Will be seeing rheumy on July 1 and start reduction. He wanted to keep me on 20 for 3 mos. Will start slow taper. I'm a little anxious about it but I hope I am one of the lucky ones and will do well. I am an optimist so I'm hoping for the best. The other thing I did after diagnosis was to shift to pretty much a plant based anti inflammatory diet. Cut out all refined sugar, soda, caffeine, most breads, etc. Don't know how much this is helping, but I've been able to keep my weight down(actually trying to lose some) and seem to be doing pretty well. I'll keep you posted after I start reduction.
Paula, Thanks for your reply. I, too, wasn't diagnosed until 4 months after symptoms. I thought I was going to need surgery on both my shoulders due to the pain and that the MRIs showed partial tears in both my rotator cuffs with inflammation and some arthritis. Lucky for me that my PC was sharp and knew me well enough to start questioning why all of a sudden I was having all these problems with my shoulders and ran some blood tests. I, too, have changed my diet to a plant-based diet and I think it has to help with the inflammation process. Good luck on your journey.
MrsO, Thanks for your response. Should be cutting back on pred the beginning of July. Rheumy wanted me on 20 for 3 months. Had bone density test and all was good. I've cut out all refined sugar, caffeine, soda, etc, and have gone to a plant-based diet. This has kept my weight down and hopefully will lower my risk of diabetes. Thanks for the advise about activity level while tapering. I will try to heed it.
Pam, your are very encouraging. 20mg has made me feel great most of the time. I hope I can keep my activity level up as well as you. So far, so good. I'll see what happens when I start to taper next month. Will take it very slow.
Thanks for the response. Hope you continue to do well and are able to get back to doing all your activities.
Vickie, I have wondered about activity level and possible link. I have always tested my body with my atheletics. Run marathons and other strenuous activities. I have read that this can have a negative effect on immune system if you overdo things. The question is what is overdoing? I try to push myself but usually stay within my comfort zone while exercising. I'm sure there must be a balance which can tip to the negative with too much physical stress on the body.
I'm a little anxious about what will happen when I start my reduction. I will try to take it real slow.
It is a very weird and strange disease. Most people have never heard of it.