Just diagnosed with PMR

Hello joan83529

Don't panic or despair - just cos these side effects exist doesn't mean you will get any or 'all' of them - the real 'experts' on this forum will explain that very well soon i am sure. I can't tell you what a relief it's been for me since the beginning of this year when I first got a PMR diagnosis to NOT be 'stiff' and in pain. After awhile with all that it becomes harder to recall what being able to move freely and comfortably feels like. I had that for about a year - getting slowly worse before I got almost complete relief after 4 hours of my first dose of Pred. I only took one other prescription drug prior to that - Lansoprazole for a long term reflux problem (all my siblings have the same) and after more than a decade on that I have had no associated side effects that I am aware of. Good though when taking Pred to always 'line' your stomach regardless of a PPI - Greek yoghurt works very well for that and is nutritious and low in carbs - the very best 'way' of eating to control possible weight gain which many also think (wrongly) is 'inevitable'. I have in fact lost 10kgs since I started taking steroids three months ago.

You will get lots of moral and other forms of really informative suggestions and support on this forum - and things can work out lots 'better' than you think at first.

Good wishes with everything

Rimmy

Hi Joan. I hope this helps but I have had PMR now for 3 years which is a relatively short time compared to some. Believe it or not the preds are a lifesaver when it comes to pain relief and for me that far outweighs the side effects I suffer. Preds control the pain not the condition and only time will allow the PMR to burn itself out. At the end of the day it is your decision as to whether you take preds or not but I would rather be pain free. Good luck.

Hello Joan, I too was afraid of starting Pred after reading the details. However, at the time of my appointment with the doc, she said that until she saw the blood work results (about 3 days) I was to take the Pred because if I did have the Temporal  Artitus then It could cause blindness!!! So I started with my first 20mg Pred and it was like a miracle pill, within three hours the pains of three weeks in legs and arms, had melted away. I had loads of energy and felt more like my old self. Three days later the nurse called to say stop taking the Pred as I didn't have this awful thing! But I said then what have I got?? I had to see the doc, one week later I saw the doc. She thought I had PMR but wanted me to see the Rheumy as they could do further testing. By the time I knew I had PMR I was still on 20 mg. but feeling jittery and slightly queasy. I started to taper off as siuggested by my Rheumy 1 mg at a time. So in summary I would say try the Pred. I'm told if you only take it for a short time you can stop it suddenly, but I'm not a medical personnel so don't go by my comments. The Pred certainly gives me a pain free life and I'm very thankful for it, as the pain is so miserable and debilitating. Good luck and I hope this helps you in your decision. BTW I'm down to 8 mg! 

I'm sorry to read that you have PMR but this is a very supportive forum so ask all the questions you want and someone will help. There are some experts who have lots to offer. Eileen will give you lots of information. I felt the same as you when I looked at the side effects. I eventually decided to take them and have had some side effects but they are far outweighed by the fact that life has almost returned to normality.....whatever that is. I am 2 years down the line and on 4mgs. I wish I had realised at the beginning that if I had followed a low carb diet I would not have put on so much weight. That's one piece of advice I'd like to have known. The other one is not rushing around trying to do everything at the same pace as I did prior to PMR. I soon learnt to pace myself. When I took the steroids I felt so much better but it's important to carry out a task, rest, then do another one but at a slower pace. Resting in between is so important as the steroids do not cure but help ease the symptoms. The inflammation is still there and your body will let you know. It is your decision to take the steroids but it will make life tolerable if you do. Best wishes.

 

There are no answers to most of your questions - everyone is different in how they react to pred and it isn't until you start you find out which side effects you will develop. There are 82+ listed side effects of pred - no-one gets them all, many of us have next to none! I had side effects with one sort and gained a lot of weight - but i have lost it all. I had gained a lot of weight because of PMR anyway as I had had it for 5 years before it was diagnosed and the immobility and comfort eating for the pain and depression had led to weight gain as I couldn't exercise to keep it off.

Now I would say I have no side effects to complain about - I don't bruise, despite also being on anticoagulant medication, my hair is back to normal, I gained weight and have lost it all again, I'm not in pain and can move. My bone density is nearly unchanged since starting pred nearly 8 years ago even though all I have taken is calcium and vit D. I have raised BP but for another reason. I cut carbs drastically to lose weight - and there are no signs of even pre-diabetes problems. I did have one very bad 9 months or so - but even then, it didn't occur to me to stop the pred. 

Try your pred and see how much difference it makes. And ask your GP for a dexascan as soon as possible so you have a baseline for bone density. I would also suggest not taking the lansopraole at first - if you get any side effects from that you won't know if it is the pred or that. Lots of us never took any or used ranitidine/Zantac which has different side effects - like everything else, everyone is different...

I lived with the pain for about 3 months before diagnosis and pred. I had little choice than to remain active and keep going (long story).

I have no doubt I could have continued longer, but realistically the pain was inexorably wearing me down.

At its worst the pred messed with my mood and concentration. Brain fog.

Between the rock and the hard place I chose the pred. Somehow it seemed better to feel positive about progress rather than negative.

I'm very independent. But I needed help.

I doubt I would be doing the things I am now doing (after three years, down to 3mg/day, and on a fairly arduous 3 month desert trip) without the pred.

I have had PMR for almost two years. My only noticeable side effect was heartburn, which I controlled by putting the pills in capsules. Good luck with your journey.