Likely PMR diagnosis about one month ago. Although my GP is reticent about guaranteeing that is exactly what i have. Waiting on third set of blood tests. Not sure what they are looking for. Second visit to rheumy in three weeks time to discuss progress.
Currently 15mg pred every morning (along with some other protective pills)
Struggle to get out of bed in the morning with stiff and painful shoulders, right hip and (more recently) right hand (usual?). So cannot extend or raise arms, or move the hip around much without some quite grim discomfort.
Things improve during the morning and usually fine by lunchtime.
My sense is that things start to improve as soon as i get moving but i am willing to accept that it could just be the steroids kicking in. So i can still walk the dog first thing and spend that time waving and rotating my arms and shoulders around in the park like some kind of escaped lunatic.
Question. Is it getting things moving that improves matters or is it steroids... or bit of both ?
I can 'man up' the pain first thing i guess, but should i have to ? I am kind of reluctant to start taking higher doses of steroids based on the very clear theme in this forum, that it is difficult to get off them again.
The thing that is pi##ing me off is that i had a few days of waking up feeling pretty good. In fact pretty much fine. Then, today, i am worse than i can remember for a while. There seems to be no rhyme or reason for this disparity ? I am not sensing that it is related to diet, alcohol, exercise, weather....etc. Hit a few golf balls (badly) at the weekend but would have struggled to do so this morning. So how am i supposed to plan anything ? Irritating.
Nearly as irritating as having tedious ill-informed conversations with friends / colleagues about what PMR even means and how it feels.
I suppose my main question is this. Lets assume that morning pain for a couple of hours is the new normal. And if the steroids only mask the problem rather than cure it then do i wait for the morning problems to go away before reducing the dosage ? If the new normal is still there in a months time when i am supposed to reducing to 12.5mg apparently then i am not sure this wont cause a bigger problem. Then again maybe the new normal will still be there in 2,3 -5 years time ? In essence the question is what's the relationship between pred / pain / status quo* / cure** and time.
56. Otherwise healthy. Haven't seen a doctor for 15 years. Full time job. Things i need to do. I cannot sit around for years like this. Need to take control somehow.
* Not the band
** Or this band either
Written by
NickWarwick
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I suspect a good start might well be to try 20mg - 15mg is towards the bottom end of the range for starting dose and size matters. Big people need more than little ones. You won't reduce successfully if you haven't got the existing inflammation under control and if you try to before it is then you will have even worse problems with pain. That is what makes it difficult to get off pred - not getting things properly under control in the first place makes the rest of the journey harder. You aren't heading relentlessly for zero, you are looking for the right dose for YOU and YOUR PMR for however long it takes for the autoimmune part underlying the symptoms we call PMR to burn out. And neither that dose nor the duration can be forecast.
It isn't unlikely that those golf balls have a bit to answer for! Shoulder inflammation is a major part of PMR for most people and you probably woke it up - often it takes a few days for you to feel it and that is why we plug on about pacing. And the golf swing is a whole body work-out:
"So how am i supposed to plan anything ?" - I fear, for the moment, probably with difficulty. You may have to reprogramme your expectations considerably for a while. It isn't for ever and men usually do well with PMR, but initially you have to get to know your own situation and make some lifestyle choices in terms of priorities. You may find walking a few holes with your buddies is doable and acceptable - especially the 19th (though I wouldn't start with completing the other 18!). However - you may find that walking on uneven ground causes problems - it does for me. It is much harder than walking on smooth paths and your muscles are currently intolerant of acute exercise. You have to train them again - and at a much lower level at the start. And rest days are essential - any good physio would tell you that,
What time are you taking your pred? The optimum time to minimise morning stiffness is 2am so the blood level is at its peak by the time the inflammatory substances are released at about 4-4.30am but the sooner after 4am you can take it the better - waking early, taking it and settling down for another couple of hours lets it start to take effect. The longer you wait - the more inflamamtion has been created and the bigger the clear up job so it takes longer.
The annoying thing is that movements you don’t think about as being strenuous become so. It is case of cutting right down and build up to a level that your body can cope with right now by waiting a couple of days to see what the fallout is. If your body complains, don’t push it. You’ll find the goalposts move a fair bit too. You’ll get there, just not at the speed you are accustomed to.
Lots of what you’re describing resonates with me. I was 55 when PMR struck overnight 18 days after early retirement. Another 6 months before diagnosis. Was petrified of pred, suffering terrible pain and stiffness, especially in morning, and the mental aspects of having an auto immune disease took its toll.
First thing I did was attempt to get pain under control. GP prescribed 20mg which pretty much did the trick (I’m an overweight woman). Still stiffness in the morning so after much exploration and trial with dosage and timing, I settled on a split dose with 2/3 taken in enteric coated capsules at 11pm (to avoid getting up at 2am). The other 1/3 at 11am.....amazing result, pain free days and nights.
I allowed myself to grieve and went through all the stages accordingly. I was angry my retirement was not what I had planned, I was sad, I denied that I’d have to deal with PMR for years, not months. When I accepted I had no control of the disease activity, and focused on what I could control (diet, rest, who I got support from, etc), things got better. I’ve made adjustments along the way and am in tune with my body and symptoms.
Things get better, and for me I lost and kept off 30 pounds, off blood pressure meds, and avoided knee replacement surgery (for now). I golf, walk, play pickle ball and do deep water exercises (which are the best for me). I still have challenges (3 flares in 2.5 years, “stuck“ at 9.5mg), however I am better equipped to manage them, along with the support of these forum members, who “get it”. Be mindful of your exercise/activity as to not overdue it and get DOMS.
You may be surprised how others around you receive your new diagnosis and respond. Stick with the folks who are supportive, find a way to deal with the ones who aren’t. We are here if you need us, ask anything.
Oh, and advocate for your health with the medical professionals...you are an expert in your own body. Take care and keep us updated.
Welcome to the club we wish you didn't have to join.
Some basics: PMR is an autoimmune condition that causes vasculitis. The blood supply to your muscles, tendons, ligaments and bones is diminished by the overproduction of inflammatory substances which, when functioning normally, help to clear out infections from viruses, bacteria, etc. The condition typically lasts for 2-7 years.
For us, something we don't understand yet is triggering an overproduction of inflammatory substances. Your body is overreacting. Physical stress, emotional stress, a cold, a flu, weather, some foods you're sensitive to, some substances you're mildly or actively allergic to, make some days worse than others. Keeping a diary of food, beverages, weather, activity, stressful events, etc. may help you identify patterns and help you avoid your particular set of triggers.
As an athlete, I'm sure you can appreciate that you need to be really careful not to cause yourself any injury. Both pred and PMR make us especially prone to muscle, tendon and ligament injuries. Believe me when I say the last thing you want to do is precipitate an injury. It's unbelievably more painful, and recovery time is a lot longer. You especially don't want to be tearing anything like a tendon or a ligament. Your exercise should emphasize retaining range of motion over strength, then slowly build stamina. You might want to back off on those power shots on tee-offs and drives for a while, and practice those sand trap, rough and putting shots. Work on finesse instead of force. Talk to your mates and see if they'll let you take drops instead tee-offs and drives.
It sounds to me like you should be on a higher dose for a while. Maybe 17.5-20 mg for a few weeks will mop out the accumulated inflammation. After a while, you should be much more comfortable most days, and can start a slow taper.
Pred makes you more comfortable because it reduces the inflammation. It is not a party drug, and it is not a painkiller. It does treat your symptoms, but does not treat the underlying cause. So far, nothing else we know of does.
You need to take as much pred as it takes to control the current level of inflammation. After a few weeks, the backlog should be cleared out, and you'll set off the find the level you need to have a good quality of life. You need to make those drops at no more than a rate of 10% of the dose, and space the drops 4-6 weeks apart. Whenever you do drop, you may feel some increased level of discomfort in the first few days, and it should resolve itself in 7-10 days. (We refer to that as "withdrawal", but it's not what it sounds like. You're not addicted to anything.) If your level of discomfort increases over a few days, you've overshot the dose you need to keep the inflammation under control, and need to go back to at least the dose where you were last comfortable, sitting there a while as things settle down. This is a flare, and if allowed to take hold, may set you back much farther. If not properly treated, your condition can advance to GCA, with the possibility of loss of vision and/or stroke. You don't want to go there.
You don't say what those other "protective" pills are, but I don't take anything except a real meal and copious amounts of water with my pred doses. That means no supplements or anything else for 2-4 hours before or after a dose. (Calcium and pred interfere with one another, for instance). I also found that splitting my dose - half in the morning (5-6am) and half in the evening (10-11 pm) helped when I was at at higher doses. I eventually eliminated the morning dose by tapering, and am now at 6mg after just short of 4 years. The lower I go, the slower I go. When I get to 5mg, I'll be using one of the Dead Slow, Nearly Stop tapering plans, which you'll find under Pinned Posts. (Click on the "See All" arrow at the top of the panel to the right on your screen, and scroll down to find it.) For now, don't get ahead of yourself.
You're also going to find that you need rest - and lots more of it than you ever needed before. Besides the fact that pred interferes with sleep patterns, there's the underlying condition. Keep that in mind if you are driving or doing something else that requires you to be alert, because these need for a nap cam sometimes descend quickly and assertively.
There's lots more to learn, but come back with questions - or even just a rant of frustration - whenever you want. We have members all over the world, and it's a pretty sure bet someone has been wherever you find yourself in the moment.
Wishing you a short journey on this road, but however long your trail is, you're welcome and needed. We look out for each other here, as much as we can from a distance. There's a wealth of knowledge and experience to help you along, and don't be afraid to contribute your own as things progress. We're all in this together.
“You don't say what those other "protective" pills are, but I don't take anything except a real meal and copious amounts of water with my pred doses. That means no supplements or anything else for 2-4 hours before or after a dose. (Calcium and pred interfere with one another, for instance)”
Just read this and wondered if ok to take Omeprazole with the PRED?
The amount of calcium in a yoghurt is much smaller and it is the supplement substance that coats the steroid tablets so they don't break down properly to be absorbed. Dietary calcium works very differently to the artifical stuff in other ways too.
Nick, these folks gave me the same advice a few weeks ago. Listen to them! I too am a golfer - it’s about all I have to do at my age. Tried golf while still on 15 mg and was in much pain the next day. PMRPro and others said to try 20 mg, which still may not be quite enough at this stage but it worked. Still weak I think from the Prednisone but I can see a pain free future I thought was gone forever.
My “Rheumy” wants me to call her next week after blood test results are in to see what has changed after a month at 20 mg I will try whatever she says, but I think PMRPro has it right. I don’t care if I am on Pred for life if it allows me to have a good life. The pain before Pred was intolerable and I seriously thought I was done. Now I can see a managed future of a normal life.
From what I have read dose is weight related. I weigh 230 pounds (not too much fat) just what I have always been.
My Rheumy agrees that is likely why 15 didn’t work for me but 20 does. Hang in for now - we both need time to get used to this and have a decent life with or without Prednisone.
I am, and have for many years been, 12 stone in old money so that would be 168 pounds in the colonies.
I get the message about taking things easy but perfect golf weather today in Warwickshire so I am going to carry half a set over 9 holes with my brother in law this afternoon and see how that goes. Pretty much the minimum entry level I would say anyway. Not exactly 18 holes per day for four days on a boys Portugal tour is it ?
Took 10 mg Pred at 2 in the morning and 5mg when I woke up. Feeling ok today to be honest.
Slow swing and a couple of beers afterwards. If I can’t manage that then I’m stuffed.
By the by. Does Pred cause insomnia ? Couldn’t get back to sleep for ages after the 2 o’clock project
Insomnia for some. I’ve been sleeping great with pred. Actually it’s such a beautiful day here in Virginia I’m going to get in 9 holes myself - with a cart. Probably get a beer as well, sounds great. Cheers!
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