Hi, I'm Mark a 49yr old male recently diagnosed with PMR. For quite some months have been nagged by stiffness and pain which started in my left shoulder but subsequently right shoulder with pains radiating down into chest and upper back, also my groin both sides. Although compared to some I think I have a relatively mild form it was getting to the stage where morning's were so stiff and miserable I could barely motivate myself to get to work. So painful to bend and lift knee to put on socks trousers and shoes, also raising arms to put on a shirt or pullover. Getting in and out the car and turning my head to look at junctions became a bit of a nightmare. Fortunately I have a private health plan as after taking a set of blood tests which came back ok with CRP 5.0 the GP didnt feel necessary to refer me and clearly told me I didnt need to see a Rheumatologist and that my symptoms were most likely 'mechanical in nature'
But in the end and since I have the PPP she agreed to write a referral. During the resulting consultation the Consultant indicated although a little atypical I did seem to present with PMR and he would do a litmus test to firm up a diagnosis with 120mg of depomedrone intramuscular (also took a chest xray and a few more blood tests whereby the CRP came back as 5.9)
I'm almost sure the injection worked within hours, but anyway the next morning I was pretty much transformed and felt like a different person. A week later I had a follow-up where we basically agreed to adopt a wait and see approach, being youngish for this and not too severe to see if somehow my body can get on top of this condition with the help of the initial injection and maybe follow-up shots when/if required . So the injection was 10 days ago and I'm left wondering how long might I benefit from the relief its given? In researching I found some information that showed the release profile of intramuscular depomedrone lasted upto around 18-21 days before it is no longer detectable. does that mean after 3 weeks I'll be back to where I was before or does it not work out like that? Any experience on this would be appreciated. Thanks.
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dundinha
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If you have PMR it will come back guaranteed. I'm male PMR started with me in August over 2 years ago when I was 61 have had 2 relapses since then, cant get rid of it slowly tapering my doses of prednisone steroids about to take 8mg per day that's when I had my last flare up. If you do have PMR I expect you will end up on prednisone. Being outside the normal age range causes the medical people to doubt you have PMR. I've read about a 27 year old male who ended up in a wheelchair before they worked out he had PMR. Best of luck
The response you had to the depotmedrone does suggest PMR. The British guideline are that PMR should be suspected for appropriate symptoms in anyone over 50 years of age - so I don't see why with what sound like typical PMR symptoms you are being called atypical/fairly young at 49. There is no rule that says at 49 and 9 months you can't have it but on your 50th birthday you can!
How long the shot will last depends on the person, for some people it will last weeks, for others a much shorter time. In PMR the inflammation is being cause by an underlying autoimmune disorder which is ongoing. As long as it is active you will need pred on a continuing basis to control the symptoms - the pred does nothing for the autoimmune part of the illness, nothing does, the pred just manages the symptoms by reducing the inflammation so there is less pain and stiffness. In the UK it is usual to give an oral dose of 15-20mg/day of corticosteroid (prednisolone or prednisolone, Medrol tends to be used in parts of mainland Europe and the US). This should be enough to control the inflammation. Then that dose should be reduced very slowly to identify the lowest dose that controls the symptoms. Go too low and the symptoms return as the inflammation increases.
Frankly, if it is "not too severe" that is probably just because it is starting up! I had mildish PMR for 5 years as it wasn't recognised before it really went haywire - but I never had a day without pain, there were things I simply couldn't do and I really rearranged my life to accommodate the disability. With no help as I wasn't perceived to have anything to make me disabled. When the PMR finally turned into a 10 ton truck I couldn't move and I hurt all over - would that have been avoided had I been treated with oral pred earlier? I was put on oral Medrol when I moved here and it did nothing for me, I appeared to be resistant to it, I had a major flare and was in as bad a state as I had been previously. Changing to a different form of pred achieved the same miraculous result as at the beginning.
There are some rheumys who try to control it with injections - being exceedingly cynical I wonder if that might be they get paid more than telling the GP to write a prescription for oral pred since I rarely come across NHS consultants who try it. It doesn't often appear in the literature though it does get a mention. I would have thought that it was difficult to reduce the dose and I know my granddaughter had horrendous side effects when they tried depotmedrone for her asthma.
Where are you? In the UK there are many support groups with some men - though in fairness they are usually rather older than 49. There is a former fireman on the forum who was in a wheelchair due to PMR in his early 50s but after a couple of years is now back to running - there is a thread on here about his latest escapades. I was 51 when mine became noticeable - after a few months in increasing leg weakness I couldn't use the cross-trainer in the gym without excruciating thigh pain after about 2 minutes. My bloods were normal - so there can't be anything wrong said the GP. As he said for the next 5 years.
if you follow the link you will see all his posts - he was 51 when it started and is nearly off pred after 18 months. Men do often get through PMR quicker and more easily than many women - noone knows why but it does appear to be a bit different. Maybe your rheumy isn't aware of the fact that men and women differ so much.
Hi Mark - It's interesting reading your post of another young-ish male. I was 51 yrs old, extremely fit and active climbing big mountains and running marathons - please visit some of my posts. I'm on long term steroid reduction over the last 18 months from 20mg to 0.5mg. In the last year I've started climbing again (Cuillin Ridge in Skye) and booked unclimbed summit in Himalayas with team next October. I'm also running again and have completed Great North Run in 1:50 and 48 UK Parkruns. Would you be happy to chat? Take care - SkinnyJonny
Hi Skinnyjonny - Thanks for your note, I've always thought being active helps stave off health problems but clearly that's not the case. I've not matched your activity levels but still have been a regular exerciser from my school years. I managed the London marathon 3 times - last 2010 and past 3 years as well as running have been doing gym at least 3 times a week. At first that's what I thought was the source of my pains/stiffness - overdoing it!! But then with rest they didn't go!! So having yourself been so active you must know exactly how difficult and frustrating it is to accept this condition. Fortunately I think I'm relatively mildly affected and hoping it doesn't get worse, although one well meaning poster suggested it could be because the condition is just starting up!! Hopefully that's not the case.
Good to see your example of getting through PMR - how long did it take.? and how bad were you affected?
Anyway since writing my initial post I got the answer to my question - groin pains/stiffness ramped up during last week ie 2-3 weeks after injection, by the end of this week it will be 4 weeks and I'm feeling I need the relief of another shot. After reading around it seems milder cases of PMR can be managed with depomedrone injections and I found a paper that said an injection regime every 3 weeks could result in overall lower cumulative doses of prednisolone and avoid adrenal suppression. So perhaps this will be the way I go, lets see, I need to discuss with the consultant in the new year. All the best - Mark
I had injections for 2 years, due to horrendous depression issues with pred. I started PMR aged 58. Slammed into it after a 5 month intro period, including a slipped disc, heart issues and swelling on legs and knees eventually morphing into disabling pain in upper body and hips/knees. I had no treatment for a further 7 months as I could not get into the right bit of the NHS and nobody seemed to know what the problem was, or could identify it. The Rheumy I finally got to (fabulous lady), wanted to rule out anything else being responsible for the awful state I was in before putting me on thug drugs (she wanted to know what I was going on the steroid for - very sensible, though horribly painful for me). Had DEXA scan before starting too - do get one. it will show you where your bones are before steroid starts affecting them.
To begin with a jab only lasted two weeks - and the last few days of that time were a complete, depressing, struggle. I had 120mgs jabs for the first year, starting with a jab every 2 weeks, stretching to one month over time (I need to go back to my notes for exact timings - will do if they help you though). I won't deny that I still had very, very difficult times and it took some personal 'grit' to get through. Then as I managed to go up to a month between jabs, I then started to reduce by 20mgs at a time - but over quite a period.
Best not to go down more than 20mgs at a time - I did try more and this was a BIG mistake. My Rheumy and I decided that I did better with more, but smaller jabs (big ones with big spaces between/small ones regularly - all give the same outcome, but different bodies respond to different regimes) and she was 'cool' with going with what my body needed (I said she was fab...!).
I was off jabs within two years, with Methotrexate being prescribed alongside for the last 6 months of D-M jabs, when the second DEXA scan showed the mild osteoporosis getting worse and I needed to be off steroid asap. Only the one flare, due to my reducing too much on one jab - so got off lightly. May be to do with what I am normally like?? - very determined as I'm sporty and was utterly determined that I couldn't live without being able to move fast under own steam; swam and walked through big pain (involved crying with pain on occasion), got physio, massage and reflexology - and eventually went back to horse riding (and then mucking out too)!
Have to say I don't have the stamina I had pre-PMR and my knees are not good and sometimes get aches in my hands, but otherwise am OK and so very relieved to be relatively free of the wretched condition. now I just have to stop it recurring.......
Do join a support group if you can - I find talking with others is so good! We had our first London meeting recently and there were quite a few men there - so don't think you are going to be in with a load of jabbering women - we are all getting to be experts in our own right, male or female - and can offer a genuinely sympathetic, but knowledgeable ear.
Can I just say that developing osteoporosis does NOT necessarily mean having to stop taking pred. There are medications that will reverse the osteoporosis if it is severe - and stopping pred will mean a return of the PMR symptoms if the underlying autoimmune disorder is still active. If that is bad enough then you will be immobile - and still at risk of osteoporosis. The same applies to developing pre-diabetes - you can manage it successfully with care.
The injections are less adjustable than oral pred - yes, you start at 15 or 20mg/day of pred but with oral pred you then reduce that dose to the lowest dose that manages the symptoms. For most patients using a slow reduction scheme (not more than 1mg at a time from the start and spread over a week or two each time) the maintenance dose is frequently well under 10mg/day, often under 5mg.
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