Brand New to the Discussion Group - PMR for about 6 mths
Posted , 12 users are following.
About 6 months ago, I began having pain in both shoulders. I had been playing a lot of golf and in line with that was doing a lot of upper body exercises. I overdid it and was first diagnosed with two partially torn rotator cuffs. But the pain and stiffness got worse and spread to my arms, then wrists and upper part of my legs. All the normal functions of life changed: putting a shirt or socks on; getting into the car and putting on a seat belt became a task. At one point, I was having to lift a coffee cup with 2 hands.
After the rheumatologist did the confirming tests, I was diagnosed with PMR. Starting out with 20 mg of prednisone, the pain disappeared. Early on, I decided I was cured and decided to just use Ibuprophen. Wrong decision. It came roaring back. I went back on 15 mg, and for the last 2 months I'm on 10 (5 in the morning and 5 in the evening).
I hope to be down to 5 mg within the next month.
I'm almost 73 years old. In addition to the prednisone, I'm also on BP medication and a statin . I also take CoQ10 to offset downside of the statin, Vitamin D, Tumeric, Calcium Magnese, and Fish Oil.
I'm back to playing golf with no pain and walking 3 miles or so is no longer a problem.
I believe that part of my recovery is due to my daily routine. I was in Physical Therapy for several weeks and I have now created a way to modify several of those exercises and do them in a hot tub we have.I get up every morning between 4:30 and 5:00 am and do these exercises: 2 sets of what looks like a breast stroke - head above water ; then a reverse backstroke (120 of each; then arms bent at a 90 degree angle and doing 2 sets of 35 reaching back as far as possible; then with 3 pound weight - reaching arms forward as far as possible as if I'm peddling a bike but with my arms 120 forward; 60 reversed.
I'll report back in a couple more months about any progress or lack thereof.
A friend with PMR referred me to this discussion group which is outstanding. Glad to contribute.
0 likes, 21 replies
ptolemy bob03667
Posted
Are you saying you intend to drop from 10mg to 5mg in the next month? Am I understanding you right? I may be wrong but it does sound like a recipe for disaster.
Rainlover bob03667
Posted
Not a Doctor, but I would suggest 5mg Prednisone. Reduce you current dosage slowly. 1 mg per week.
Read up on Prednisone and you will find some nasty side effects. I have been taking it for about 7 Years. I am trying again to reduce it at half a mg for a week or two. It will take a long time to achieve my goal of 5 mg.
I am overweight by about 50 kg. My teeth are rotten. But I am able to do things like form a fist. Lift my arms to hang up my washing.
If I can reduce to 5mg I would be very happy.
The alternate is simply pain killers which I take. Oxycodine at night and Endone during the day.
Hope this is of interest to you. Post back if you need more clarification.
EileenH Rainlover
Posted
There are many claimed side effects of prednisone. However, a recent study by a PMR expert at the Mayo clinic found that apart from cataracts they are no more common than in a matched population of patients without PMR. Most pred side effects can be avoided or minimised when you know how - even weight gain and steroid-induced diabetes.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
I have been on PMR-level doses for well over 9 years - I have NO identifiable side effects. Everyone is different and it is really rather irresponsible to encourage someone with a PMR diagnosis to reduce at 1mg per week - 1mg per MONTH is the recommended approach.
There is no specified dose for PMR and so you can't recommend a dose for someone else - they must find it for themselves. If you take too little you may as well take none at all - the left-over inflammation will build up again until you are in the same state as you were at the beginning. Which seems a bit pointless. Especially as untreated PMR is 7x more likely to progress to GCA than treated. And then your choice is high dose pred (50mg or more is not unusual) or risk losing your sight.
gajet EileenH
Posted
Just a quick question about this study. Isn't it comparing two groups that are both on prednisone? One group has PMR and one doesn't. I've been wondering this for awhile. Thanks for any insight.
Anhaga gajet
Posted
Just read the link provided and you're right, gajet, it is ambiguous and certainly does sound as though it's two sets of patients taking steroids, one with PMR and one without. But it makes no sense because if this is indeed the case we need to know what the others were being treated for. So most likely it's a sentence or two which needs an editor's corrections.
EileenH gajet
Posted
It depends what you read what impression you get! I'm fairly sure that the age-matched group were non-PMRers and not on pred but I won't swear to it. I have once found the original ...
jack1949 bob03667
Posted
Thanks for your story Bob.
my story parallels yours although starting with 20 mg/day hasnt totally erased about 4-6 hours/day of mild to moderate shoulder pain. I've been reluctant to up my dose until I get to see a specialist (I'm Canadian- we often wait for appointments) Mid May can't come soon enough!
Regardless, I've decided to up to 30 mg
I appreciate how the hot tub movements helped. I've tried that but unfortunately overdid it first time and suffered next day.
I don't have a hot tub at home but need to get back to the public one I use.
I don't golf but am happy to know that my sport of cycling laughs in the face of PMR
EileenH jack1949
Posted
Before upping to 30mg, why not try splitting your 20mg dose with about 2/3 in the morning and the rest at about 2 hours before you expect the pain to reappear. The antiinflammatory effect of pred lasts from 12-36 hours depending on the person - it sounds as if it is wearing off for you before the next dose is due. Splitting often achieves freedom from pain without having to go to such a high dose from which you are going to have to reduce again anyway later.
jack1949 EileenH
Posted
Thanks Eileen, I've been trying 15 very early am and 5 with breakfast. Seemed a bit better at first but didn't last.
BTW, a variable I don't see mentioned but which I've read is relevant, is body weight
I am currently 81 kg with a target ( don't we all have one, lol) of 75 kg
EileenH jack1949
Posted
15mg was always plenty for me at a similar weight - but there are other variables besides weight. Which is the reason for starting at a dose that should be enough and tapering to find YOUR personal dose.
The difference to what I suggested though is that the second part of the dose needs to be taken late enough to extend the antiinflammatory effect up to 24 hours. So maybe your 5mg needs to be taken much later in the day.
Michdonn jack1949
Posted
Jack, I ended take 2/3-3/4 after breakfast and the rest at bedtime, that is what worked for me. Played around split different amounts at different times, at one point thinking of get the coated pred for the evenings. Don't try to reduce if you have any PMR pain. 🙂
Michdonn bob03667
Posted
Gentlemen, we are all different and each PMR case is different. I have split my dosage and had to play around it get what worked for me. I believe you must be positive and active, I am cyclists and ski instructor us I stay active. I have had some bad flares, never reduce your dosage if you have any PMR pain, the inflammation get out of control and you end up taking more Prednisone. Good luck on your PMR journeys try smiling. 🙂
andy34717 bob03667
Posted
Hi Bob,
Thanks for your post, I am a few years younger than you at 48 and enjoy my golf.
Similar to you, my pain started in my right shoulder 12 months ago and after a few months switched to my left and then very rapidly to the hips and top of my hamstrings. Originally, I put this down to over doing my golf exercises and playing a little too much golf. I tried to manage the pain with ibuprofen and then headed towards physio treatment as I thought I had somehow damaged or overstretched something and then tried deep tissue massages...all with no success to reduce the pain and discomfort which got worse.
After a few more weeks I then went to the GP and after a few days of waiting for tests, he kindly prescribed Pred and I had the first night of peaceful sleep for over 6 months.
I have then seen a Rheumatologist who suggests because of my age I dont actually have PMR and instead have some form of arthritis which i cant see, but the only way to potentially tell is to be off Pred...not going to happen anytime soon I think. Last summer I started at 15mg and am now down to 4mg (split 2mg at night before bed and 2mg in the morning)...only one flare which was last Saturday and it wiped me out.
But at 48, and enjoying my golf and exercise it has had quite a impact, although I now find that similar to you, my exercise is helping me to feel as normal as normal can be.
This forum is fab and the people contributing has helped me particularly, so I am sure you will also find the comments helpful.
Anyone have any insight into the Rheumy view that just because of my age I cant have PMR and instead have some form of arthritis that only affects certain parts of the body?
Cheers, Andy
bob03667 andy34717
Posted
Andy,
Thanks for you email. There are two key tests for identifying whether or not it's PMR or some form of arthritis. My first tests didn't show as much inflammation elevaation as my subsequent tests by a rheumatologist.
Here's from the Mayo Clinic:
Your doctor might reassess your diagnosis as your treatment progresses. Some people initially given a diagnosis of polymyalgia rheumatica are later reclassified as having rheumatoid arthritis.
Tests your doctor might recommend include:
Blood tests. Besides checking your complete blood counts (CBCs), your doctor will look for two indicators of inflammation — erythrocyte sedimentation rate (sed rate) and C-reactive protein. However, not everyone with this condition has elevated levels.
Imaging tests. Increasingly, ultrasound is being used to distinguish polymyalgia rheumatica from other conditions that cause similar symptoms. MRI can also identify other causes of shoulder pain, such as joint changes.
EileenH andy34717
Posted
Wants to get his blinkers off! It is unusual in under 50s they claim - but I suspect there are a lot of such patients but because they are under 50 they are fobbed off as their symptoms being due to something else. That is particularly common for women in their 40s. But I know a few people with PMR in their 40s and some experts warn in the literature of missing such diagnoses.
Anhaga andy34717
Posted
I, too, felt at first as though the pain was like that from over exercising, only it never went away and over months got worse and worse.
lil46332 andy34717
Posted
Andy:
When you decided to split 2mg night/2 mg in morning, did you have any flare ups? I'm currently at 8mg and want to start splitting it, but I'm scared of a flare up.
By the way, I got PMR in December at age 55. Started at 15mg.
Michdonn lil46332
Posted
Hi Lil, I played with splitting, started around 27mg and did till I started to taper at 4.5. I always split 2/3-3/4 in morning after breakfast. 1/4-1/3 at bedtime. My problem was I was stiff and painful first thing in the morning, the splitting helped with the morning discomfort. I played around with different dosages and never worked myself into flare. Good luck with the rest of your PMR journey, try to stay active, positive with a smile. 🙂
EileenH lil46332
Posted
Why should you flare?
lil46332 EileenH
Posted
Eileen, the other day I took my 8mg 5 hours later than I usually do and had a flare up (I was traveling). So I'm a little concerned about splitting. Not sure how body will react.
EileenH lil46332
Posted
Being late isn't the same as splitting but you only need to split if the effect of your single dose isn't lasting until the next dose is due.