New and scared

What were your ESR and CRP results?

Has your doctor considered Fybromyalgia?  Also, where do you live?

personally I would request a referral to see a specialist and even if you do have PMR because of your age and the lack of response to steroids your GP should be referring you as you are classed as an atypical patient. All the best, tina

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

If you haven't already seen it, this post has a load of links to information sources that you can rely on. If you are in the UK there are support sites with helpline phone numbers - talking to someone is easier than reading.

I could write here all day but it would take such a long time to type and to read I won't! Look at this stuff and then ask a few more targeted questions. 

Right - now I've seen your next post. I thought that would be the case.

The fact you needed such a high dose and that it took so long to kick in suggests to me that it may not be PMR that you have - even if you have typical symptoms and only your ESR and CRP blood tests are raised it doesn't mean it is definitely PMR. You are extremely young - and while I certainly am not going to say it isn't possible, because I know it is, I think that you need to see a rheumatologist as an emergency appointment and let experts have a think about it. If it is any form of inflammatory arthritis then it needs treating quickly and aggressively to avoid complications in the long run - and it has to be done by a specialist, GPs don't have either the knowledge or the access to the drugs that are needed. Pred isn't enough.

One of the criteria for a PMR diagnosis is that it typically responds to a much lower dose of pred than that (look at the Bristol paper in that post I gave you the link for). I probably wouldn't be saying this if you had responded well to 50mg pred - but you haven't and if you need more than 30mg there really do have to be questions asked. As I say, you are very young and that makes you a very atypical patient - so you need an expert.

If it is an autoimmune disorder that is causing it - and it is highly possible it is - then all the pred can do is manage the pain and stiffness. The actual cause of the illness continues - something has upset your immune system and it isn't recognising your body as "self" and is attacking the tissues, causing inflammation and the resulting pain and stiffness. You have to rest at the moment - not worry about exercise. Until the inflammation is under control all you should aiming to manage is gentle stretching and walking if you can - even in 5 minute "bursts", and by that I don't mean that you should be rushing. Whatever you are doing you will achieve much more doing it in small bites. Your muscles are intolerant of acute exercise and while you will be able to do more later, at present you have to concentrate on getting the pain better - no saying it will all go, even with PMR few of us are totally pain-free but most of us manage to get a fair bit done.

Having said that - if your hands and arms are really bad then everything you do is going to irritate what are probably inflamed tendons and they need rest. I had terrible foot pain - when I stood up from sitting it felt as if I was standing on broken glass mixed with sharp pebbles. I also had synovitis and tendonitis in my hands - it does happen with PMR though some doctors aren't aware of that. Generally PMR affects muscles more and while they hurt, the stiffness is worse and that will improve with warmth and gentle stretching, the more you are able to get moving usually, the better you will feel. I couldn't hold even a mug of tea without pain - and it isn't so much a case of not "needing" painkillers as "do they help at all?". In PMR pred is the painkiller - it targets and reduces the cause of the pain, the inflammation and swelling. Many of us don't get much help from OTC painkillers. Especially since you are on such a high dose of pred you shouldn't take any NSAIDs - ibuprofen for example - as both pred and NSAIDs can cause stomach irritation and even bleeding.

Are you able to get some help? Obviously working is out of the question while you feel so ill - most of us are old enough to be your mum and are retired but I was still working when mine started, it wasn't recognised so I wasn't on pred and it was awful - and all I had to do was stagger out of bed to the computer desk as I was freelance, working from home on translating! Touching the keyboard was agonising at times. But it was far better than trying to iron a shirt! I could manage one or two items - and then I had to sit down for a rest because the pain and the fatigue was really quite overwhelming.

As I say - it concerns me that you still have such pain at 50mg and even if you are "sitting doing not a lot". The advice I was given originally was the same given to arthritis patients - use ready-prepared food to save your hands (of course, that means you have to be able to afford it), sit while doing things, rest as much as possible and don't overdo things. You can do more in small bits as I say - but when you push yourself to do something it will take far longer to recover than you are used to and that is the main reason for learning to pace yourself. Lots of little bits, rest inbetween and your muscles won't get so tired - too much and they will tell you you have done it.

This will do for the moment!