I started having neck stiffness which then went to shoulders and then stiffness all over. Im 61, but used to be very flexible. I went to docs who did blood tests and they came back all normal, apart from infection markers which were higher than normal. I suggested either RA or PMR. Doctor has not specified anything. Doctor has referred me to specialist, which i still waiting for, but gave me nothing.
I am really scared of taking steroids, I know they help people, but i've read so many bad side effects. Is this something that i can just live with or do steroids heal it quicker?
I would like some info before i get to specialist and be talked into something i dont need.
Thanks for any help and advice
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pastamaid
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Just because you’ve read about bad side effects, doesn’t mean you are going to get all of them, or even just a few - and if you do, all can be managed.
You can live through PMR with no drugs [sure many did in days of yore] but you do run the risk of letting uncontrolled inflammation damage other parts of your body - or it progressing into GCA which is a much more serious disease and can cause permanent sight loss.
Steroids will not shorten the lifespan of PMR - it’s a self limiting disease so goes in its own time - but they will make life a lot more comfortable by controlling the inflammation and give you a better quality of life.
I'm not so sure you can ride out PMR without steroids. Certainly in my case, not being on a high enough dose at the beginning, when tapering and when I came off steroids because I was told the PMR must have gone away but it hadn't, each time resulted in almighty flare ups which took a very long time to get under control, and very high doses of steroids. For 2 years I was on over 20 mg Pred when the initial problem had been trying to get below 5mg. I don't recall ever seeing a study where PMR had been left untreated and just burnt itself out but patients' stories and my own experience over the last 11 years tells me that not taking steroids only makes things worse, like you say the inflammation is bound to escalate. I had bad side effects of steroids in the early years but that's because I knew nothing, my doctor didn't tell me anytinig useful and I hadn't discovered this forum. I now manage weight and blood sugars and BP with low-carb eating (most of the time). Insomnia is still a bit of a problem but then people tell me sleep as affected post-menopause, ageing etc, and not all down to steroids. Bones are fine. Skin a bit thin and easily bruised but that's a small price to pay for all the benefits of steroids, like being able to walk and even get out of bed!
I was sort of replying to you as you said 'You can live through PMR with no drugs' but as long as it's ended up on the right thread that's good as I have brain fog today 😀
I’m sure people can and have lived through PMR without drugs. Particularly when it wasn’t well diagnosed (not a lot changed there it seems in some cases) and dismissed as just old age - more than likely with a shrug of the shoulders.
As for a study - if not recognised nor disclosed then how can a study be carried out 🤔…
I mean a double blind study of people dx with PMR, cohorts of treated and untreated. I suspect in't olden days when life expectancy was in the mid to late 60s fewer people lived to be diagnosed with PMR and many of those who lived and got it had it for the rest of their lives and it was shrugged off as 'old age' as yo say.
Steroids don't cure or "heal" PMR, they are a management strategy to allow you a better quality of life in the meantime. For the vast majority of patients it burns out and goes into remission but there is no way of knowing how long that will take. There are doctors who will tell you it lasts 2 year - but that is rubbish. It maybe lasts 2 years for about a third of patients, although figures are disputed, but there are members of this forum who are well into double digit years of PMR. I am one - 18 years and counting. Without pred I would have had a long and uncomfortable time. I have no identifiable adverse effects of the pred - not even loss of bone density, at my last dexascan it was little lower than when I started pred. I needed a high dose to help manage the atrial fibrillation the PMR caused - the cardiologist couldn't help any better.
Everyone has their own story but the ones of great problems with pred are far outweighed by those where there were few problems. Some can be avoided or managed when you know how and others reduce as you reduce the pred dose, There are 82 listed adverse effects - no-one gets them all, some get none or next to none. But for almost everyone, pred gives them their life back. And it reduces the risk of GCA developing - if you get that you will have no choice or you risk losing your sight, totally and irreversibly. Which puts a rather different complexion on things.
If it is PMR, steroids work like magic. They are a wonder drug and are used for abour 200 ailments. Sadly they do have side effects but on the other hand so do most drugs.
Morning, welcome to the forum. If your PMR is confirmed then steroids, Pred, is the only management strategy in this country at the moment. Yes, the list of possible side effects is long and daunting, but the word "possible" is important. You may get some of them, you may get very few or none of them. Those you do get are usually manageable by a change in lifestyle and diet. From being pretty much carried into hospital, unable to move a joint and in agony Pred gave me my life back in a matter of days. Three and half years in it has given me no discernable side effects and I still have good and no change in my bone density scores (DEXA scan).
As also said, all drugs, even the ones we buy over the counter have fairly long lists of "possible" side effects.
I was a couple of years younger than you when PMR 'got' me. I started on 15mg of Pred and all the pain and stiffness went within a day. I also didn't suffer any of the side effects that people talk about. Maybe I was lucky, maybe the side effects aren't so pronounced in us blokes, maybe my diet and lifestyle helped but for me, the steroid was an absolute wonder-drug.
And my concern would be that the longer you leave it, the higher the dose you might need to bring it under control and therefore any side effects that you might suffer from could be greater.
Thank you so much for the reassurance. My doctor is hesitant about starting me on them without me seeing specialist, but I can't get appt till new year. I have another appt next week and will push for pred. I'm not hurting as much as some, but don't know if it will get a lot worse and as you say don't want to wait for that
Good luck! I suffered for about 9 months seeing a few GP's in my practice who had the same worries as it seems that yours does. Then a new GP saw me and she prescribed the Pred saying 'if it works, it probably is PMR and if it doesn't, it probably isn't and you can stop taking it after a week or two with no ill effects'. I am eternally grateful to her!
Welcome. Sometimes you have to walk in another person's shoes. I'm retired now but was a Pharmacist. Like many of the medical folk out there, I was trained in the horrors of steroids. When diagnosed in 2017 I was determined to get off them as fast as possible. That did me no favours. I'm still on them. Now I have the PMR/?GCA tee shirt and 6 years of experience with managing this condition, all I can add is that steroids are not (for me anyway) ghastly drugs which will ruin your life. Not being on the correct dose does ruin my life because of pain and inability to move. It's really hard at the beginning because you have to get your head around all that is going on. Read as much as you can so you have the knowledge to question anything that doesn't sound quite right to you. Ask loads of questions too. There is a lot of misinformation out there about PMR and Prof Sarah Mackie is working hard to dispel the myths held by her medical colleagues so don't be surprised if one day you feel you know more than they do.
You are right slang. Pred’s rapid effect is used as a diagnostic tool. It worked for me in half an hour; I was having terrible headaches (my head felt like a primitive tumble dryer) and of course the stiffness. Like you pastamaid it started with stiffness down the left side of my neck when I woke; I had thought it was due to a draught. Is anyone able to explain this? It is quite a common symptom of PMR yet not bilateral.
Are you righthanded and how do you sleep? Sternocleidomastoid muscle tightness can be bilateral if you leave it long enough! I found it derived from the shoulder problems and I suspect the left was worse because I used my right hand for a lot, putting strain on the left side. I also sleep in my left - and often wake with a crampy feeling where the SCM muscle attaches to the collarbone.
Well thank you for this. I now know this is legitimately a Flare I had reduced to 1 mg and on occasion I get this horrible shoulder pain it was either left or right and lately it’s both sides and it is that muscle that you described when I have had this over the last month or so I go up to 5 mg for a couple of days and then titrate down back to one but things are very difficult in my life right now my husband has a whole host of new serious medical issues and I have to drive and it aggravates my shoulders and I get lots of stiffness and PMR symptoms again anyway thank you for the clarity on the shoulder issues
Sounds as if you need more than 1mg - and if you are under a lot of stress even more so. When my husband was seriously unwell during Covid (not Covid-related) I need more to be able to cope. Ironically, driving was the one thing I had NO problem doing! At this level your adrenals are struggling and I think Sick Day Rules should apply.
Thank you. I know you get this. It is hard on the caretaker. I like driving but the highway from NJ to the City where most of his docs are is like the Indianapolis 500. I will titrate up I just have been so happy to have my stomach and colon settle down and my GERD as the Pred went down. We don’t have the coated kind here. That is all so much better but the aches are back on most days.
Hi - my advice would be to take pred as a diagnostic tool and if you almost immediately feel ‘cured’ then you should take them. I’ve been on them now 4 years and no real adverse reactions. I’ve had 3 nasty flairs when I’ve gone too low which shows how important the pred is to living a pain free life. I wish you well with the future.
Doesn't mean you'll get them. I am on a high dose compared to most, since February..and the only side effect has been my moonface after about 6 months. Otherwise I'd stay on these for the next 30 years, I feel THAT much better on them. I'v got my life back. So try not to worry, just listen to the drug commercials..every drug has a huge list of "possible" side effects. Good luck!
Just so that i am prepared for doctor. If he does agree to give Pred, what dose is normal to start and what else should he give me to protect my bones? Ive read that calcium and Vitamin D are presecribed. Unfortunately, he is one of the NHS docs who tries to save the NHS money where he can so i'm not hopeful
15mg is usually starting dose -and yes a Vitamin D/Calcium supplement should be prescribed as well .
You may be offered a PPI like omeprazole is you have digestive issues, but not everyone needs it. Plus Alendronic Acid may be suggested again to protect bones- if it is, request a DEXA scan to see if it’s needed.
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