I had a steroid injection about five days ago - for shoulder impingement - and was told that some of the steroid would 'leak' out to the rest of the body, and temporarily reduce my PMR type symptoms elsewhere (though the rheumatologists are keeping an open mind as to whether it actually is PMR). This has certainly happened - I can walk for hours, no stiffness in morning: I feel like I did on 15mg sixteen months ago.
But my main question is, now that I'm on 6mg will this extra shot of steroid 'confuse' my body. And will it make more difficult to reduce once it wears off?
It didn't confuse mine at all when I had a steroid shot last summer for a hip problem. It certainly helped the hip, but the rest of me didn't feel any different. I'm on 5mg Pred and have been for a couple of years.
I would think that this kind of reaction is as individual as everything else to do with PMR and steroids, perhaps you are more sensitive to steroids and therefore got more of a boost? I don't think you are likely to have any problems with future reducing as these effects will wear off gradually. Possibly you could take advantage of it to reduce the oral Pred a little while you still have the benefit of the jab but 5/6mg is often a sticking point in the reduction journey so be a little wary if you decide to do this.
Wasn't a problem for me when I had repeated cortisone injections about 3 or 4 months apart for trochanteric bursitis last year - in fact, having got that and a couple of back problems sorted, also with cortisone injections, I have been able to reduce steadily since.
According to various papers either a steroid jab "escapes" the local area - or it doesn't! The general opinion is it does leak to some extent - but it depends where it is. Injections into a joint tend to be in an area where there isn't a good blood supply so it doesn't get far away. On the other hand, if it is injected into muscle - it gets into the blood stream better because there are plenty of capillaries around. It isn't uncommon for PMR to be picked up after someone has an injection like you have done for something else - and realises the symptoms of PMR have improved.
I recently had a conversation with a research rheumy who agree with me: "PMR" is the wrong name, it should be "polymyalgic syndrome" and she then classifies patients as "steroid responsive PMS" or "non-responsive". Given the disability it gives rise to - she agrees it doesn't really matter: if you respond t a low dose of pred and get your life back that is the aim and acceptable. It does mean that care must be taken with the exclusion beforehand though to make sure it isn't something else.
It sounds as if you come under the "steroid responsive" label - and since I do too, I'm very glad I don't have your rheumy. Mine doesn't have a problem as long as I'm well and not in too much pain.
Thanks for that Eileen. You certainly should be glad you don't have my rheumy - or rather the rheumatology registrar I saw for my first four or five appointments. When I had a bit of a setback at 9mg he said he didn't think I had PMR because I wasn't responding to the steroids and that I had had it for over a year.... When I mentioned your oft-quoted research about 25% of patients getting better between 18 months and 2 years he said, nonsense, 100% of PMR patients get better in that time. I said, well there's an awful lot of people on PMR websites who have had it for much longer than that he then said "well, NONE of them have PMR". He then required me to reduce by 1mg a month - no staggering the dose over days, thank you very much. I think his reasoning is that because they only saw me when I had been on 15mg for over a month, they did not see me at my worst.
Fortunately I finally saw the consultant in December and she overruled him entirely - said she wanted me to stick at 6mg until my CRP levels (which have never been high enough for the registrar's liking!) have reduced again.
It seems pretty obvious to me - and to my GP who is old school but seems better informed than the registrar - that there are a whole host of "PMR-type" illnesses going on here. No one says you haven't got a cold because you don't have exactly the same symptoms as someone else......
Hmmm - maybe I should start collecting these names! We have enough trouble getting diagnosed in the first place but for a registrar to believe he knows better than the greater host of the big boys makes me want to spit. In the last 5 years things have been improving markedly but if a registrar is saying that - he is likely to continue saying that as a rheumy.
It is getting to be a major problem though, not only in rheumatology. My granddaughter has severe brittle asthma, she is one of 3 or 4 children in Scotland. The other night my daughter took her in as she was wheezing - and she deteriorates in minutes when she goes off, the definition of brittle. The registrar, the nurse and the nurse practitioner refused to take Natalie seriously, "hysterical mother", Nome was left all night gasping for air and terrified until the day staff who know Naomi arrived. Within 5 mins there were 2 doctors, a hand each attempting to get cannulas in her veins. She nearly went into respiratory arrest. It might have been half way excusable had this been the first time - she is in the HDU there about once a month. She had been there last week.
Mercifully, PMR doesn't kill - but asthma does. Far too often - and it is almost always in situations like this: "I know better than you..."
If I were you, I'd stick with the GP if he thinks the same as the consultant. And by the way - no names, no pack drill in public - but which hospital?
That's shocking - but sadly not entirely surprising.
I think it's quite a small department so naming the hospital is tantamount to naming the offender - but it's Exeter. That said, I think the consultant seems very good - and as she and the GP are in broad agreement I will definitely follow their advice.
Ah but wait till you hear about the Omeprazole! I had been managing very happily without it for a good 8 months on the higher dose of steroids, taking them in the morning with a yogurt (though I understand the theory about it "lining" the stomach is dubious). No digestive problems whatsoever. But then the registrar suddenly realised I hadn't been prescribed them and when I said I really wasn't that keen to take them said "well, when you drop dead from internal bleeding the coroner will be asking me why I didn't prescribe Omeprazole." Charming, huh?
I mentioned this to the consultant - who raised her eyebrows without comment: she said she would be happy for me not to take them but that I should ask the GP in case there was some new "GP directive" on them....
He thinks on balance that I should take them, but I must say I hadn't realised before that they carried the risk of osteoporosis. When I had my original Dexa scan, I was found to have borderline osteoporosis in the spine, but because I had good hip and leg bones I was told by the registrar I didn't need to take alendronic acid even though I was on steroids. But then he was overruled on that - so I was prescribed them, but decided not to take them after reading up on them. My reasoning is that as I had the scan after a couple of months of being on 15mg most of the damage would have been done by the time I had the scan. I would be happy to have another Dexa scan - it's been over a year since I had one - and if the osteoporosis had deteriorated I would then agree to take the alendronic acid. Seems reasonable to me - but not, I suspect, to the doctors.
My mother, now in her 80s, has a terrible crooked spine and has lost a lot of height - but because she has had numerous falls and never broken anything they never thought she had osteoporosis. So it might just be a genetic thing - weak spine, strong hips.....
And while I'm on a rant - what really annoys me when they say they think it might not be PMR is that they never come up with any suggestions as to what it might be....
Are we twins - separated at birth?
The other prat was nearer London!
Loads of us don't take omeprazole. Taking your pills in the middle of a meal is just as good if you don't already have gastric problems, and for most of us, yoghurt has been the option of choice. Some people have been told never to take it as they developed cardiac pain!
I too have a couple of borderline vertebrae but everything else is fine - and I THINK that the vertebral bits don't usually improve so they wait and see if they collapse and deal with them then. Might be wrong!
But where is the logic - give pred and calcium supplements which you need even with AA - and then hand over omeprazole which prevents calcium being absorbed????
And yes "It's not PMR..." - which is why I think it should be called polymyalgic syndrome - because, for goodness sake, PMR isn't actually the disease, it's the name for the symptoms. But these people seem to thing it is the real thing. As I said, one research expert is of my way of thinking and thinks it should be called "steroid reponsive polymyalgic syndrome". Personally - I couldn't care a sod what they call it - but if pred allows me a life that's fine by me!
You wouldn't believe some of the things I've heard in the last few weeks. Did you know:
PMR isn't painful
PMR ALWAYS goes away in 1 year
If it doesn't go away in a year, it isn't PMR
A patient with typical bilateral symptoms was told by a GP with a special interest in rheumatology that that had nothing to do with PMR (as far as I know, it's a characteristic...). He responded to pred in hours!
And they get paid to say these things...
Bah!!!!!