New to all this

[Derug]

I was diagnosed about eight weeks ago, on steroids 20mg was on 30mg I still get some pain is this how it should be, I am 44 but was very ill three years ago so they think it's trauma related, is there anyone else like me?

[piglette]

Hi, I am so sorry to hear you have PMR. 30mg is quite a high dose to start, it is normally 15mg and sometimes 20mg. I assume you were able to cut down to 20mg OK. Most people find the steroids do not get rid of all the pain but you should reckon on being at least 75 per cent pain free when taking them. It is a good idea to also take vitamin D and calcium supplements as steroids can affect these. Do you? If not ask your GP. You should also have a Dexascan to check your bone density as steroids can affect this too. Again ask your GP. It is a good idea to take things more easily if you have PMR it does stop you running around as you did before, don't become a couch potato though just stop when you get tired, PMR is very unforgiving if you overdo things.

They don't really know why we get PMR, in my case I reckon it was due to a lot of stress, some people say they got it after a flu vaccine, but who knows.

[PMRpro Ambassador]

The expected response to 15-20mg is a 70% global improvement in symptoms within a week or so. More pred doesn't always mean a better result.

I think it is fair to say that very few people with PMR are ever entirely pain-free when on pred. You can also help manage it all by pacing yourself - which is essential - and not overdoing things, especially repetitive or sustained movements which tire your muscles even more than simple movements like walking. Your muscles are intolerant of acute exercise - you will be able to build up SLOWLY to doing more but the emphasise is on slow.

Have a read of this and think about how it applies to how you are coping (or not)

butyoudontlooksick.com/arti...

PMR is caused by an underlying malfunction of the immune system that makes the body attack itself by mistake - there are all sorts of triggers it is thought but no single one. Eventually something is the straw that breaks the camel's back - and the immune system goes haywire. If you have to have an autoimmune illness PMR is actually not a bad one to have - it doesn't kill and for the vast majority of people it goes into remission sooner or later. It is also well managed with pred (honestly, it is, but you have to do your bit too).

[Derug]

Thanks for the advice I will take note, I have been unwell for three years now I do get frustratrated that I carnt do much but I am slowly learning how much I can do, I feel I need to explain what happend to me in brief, it was a normal day I got up made a cup of tea getting ready for work as normal went to the toilet and had a sharp stabbing pain on my left side, went to hospital I had a ruptured bowel, had a colostomy bag and was in CCU for 8weeks I suffered sepis and very nearly didn't make it my husband and family where told to pray, but I'm a fighter I have been back in to hospital and had a reversal of my colostomy, but I'm sure I have had pmr since I woke up in CCU, I was put in an enduced coma for six weeks and was on a ventilator as the sepsis was in my lungs, I had ptsd and had lots of therapy to live with how I am now, but this is another blow and I am finding it hard to cope with trying to exercise, as I am gaining weight with the streroids.

[HeronNS]

You have a rotten time haven't you? I echo the advice of those who tell you to take it easy on yourself. When you start to feel well it will be tempting to do too much - because you can! - but don't do it. All your other health issues aside, PMR is not the pussycat disease one might think and will turn and bite you if you are not kind to yourself and pace your activities. It is important to do all the good things: moderate load-bearing exercise (whatever you can do, every day will get easier if you go slowly on this), fresh air, appropriate supplements, good diet, etc., but most of all we sufferers must remember that our bodies need some extra TLC while we recover. I've just resigned from my least favourite volunteer activity and plan to do more drawing, an activity I love and seldom make time for. All the best!

[Celtic PMRGCAuk volunteer]

Derug, only a few very lucky people become pain-free down through the doses, so yes it is quite common for you to still be experiencing some pain.

Although there is no known cause, many patients have mentioned experiencing a bout of severe stress prior to succumbing to either PMR or GCA, or both. That applies to emotional as well as physical stress, and it certainly sounds as though your body has been through a very traumatic experience, so your suspicions could have some foundation.

Don't push yourself to do any strenuous exercise at the moment as your muscles will rebel. If you can manage a short daily walk, gradually building up as you feel better, that will be sufficient in these early days. The steroids are notorious for causing increasing weight but restricting your carb intake can help.

[1Purplecrow]

Hi Derug.

I'm wondering how you are doing, and sending a giant virtual hug to you!

just thinking about you, Jerri