am i losing my mind?

Hi tuningup, When I was first diagnosed my doctor started me off on 15mg which is the norm for PMR, however after a week it was suggested (due to pain) to up my dose to 20mg which helped an awful lot. This still didn't stop all the pain so finally I had to go up to 25mg and stayed there for 6 weeks before dropping in 2.5 stages to 20mg. If you are still having pain consult your doctor again to see what he/she suggested but you may need to get the pain under control first brfore you drop. Being tired is quite common and even after 8 months on pred I still need to rest halfway thru the day. Good luck in your quest to drop, eventually.

Welcome to the world of PRM - you will get good and bad days and you will feel wacked even after mild activity!  One piece of advice is slow down and try not to do too much.  Remember the preds only 'mask' the symptoms and are not a 'cure' the underlining 'problem'is still there.  It may be you need to follow the slow reduction program here https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316 - check 6th one down.  Best of luck and remember the tortiose and the hare!

What we call PMR is not the illness itself - it is the name given to the symptoms caused by an underlying autoimmune disorder which causes your body to not recognise itself and so the immune system thinks it is "foreign" and attacks the tissues, causing damage and inflammation which in turn cause pain and stiffness. 

Pred combats the inflammation, reducing the swelling it causes and so the also the pain and stiffness. For most people this is enough to allow a fairly normal lifestyle - but rarely does it take them back to how they were pre-PMR. The pred has no effect at all on the fatigue aspect of the autoimmune disorder, that is something to do with the autoimmune bit and no one really knows how or why or how it can be improved.

As I say, the pain relief is rarely 100%, a 70% global improvement with pred is what is looked for as being typical of PMR. The rest of the management of PMR is very much up to you. It requires rest and adaptation of your lifestyle - and it may mean giving up some things. Certainly, if you take pred, feel well and immediately go back to "normal" activities you will very likely suffer in the way you describe. Your muscles have become intolerant of acute exercise - even a small amount of activity may be the equivalent of having run a marathon, your muscles will protest and they will take much much longer to recover than if they were healthy. This is made worse by them being unable to warn you in the normal way that you are overdoing it. 

If you look at your good and bad days then you will probably find that a good day is followed soon after by a bad day: it may be the next day or it may be 2 days later. I remember one lady saying that in the early days she would be out shopping, say in a clothes shop, and suddenly felt as if she had hit a brick wall and just wanted to lie down on the floor under the dress rails and go to sleep. You have to learn to pace yourself, not to do too much all at one go. In time you will learn how to know but to do that you have to stop early - if you don't suffer you can try doing a bit more the next time, and a bit more. You will be able to do more - but not all at once. 

Some people feel very euphoric on pred - I can only assume this has led to them saying to their doctor how well they feel and the doctors don't realise it is the pred speaking. There are doctors who will tell patients they will be "back to normal", "there will be no pain", they will "be off pred in a year (or two)", All I can say is: not in the PMR world I inhabit, along with a few hundred PMR patients along with me on the 3 forums here in the UK.

The appetite thing is the pred - it often causes increased appetite and it changes the way your body processes carbohydrate. Both these things can lead to weight gain - so be careful. To some extent there may be weight gain you cannot control but that is less common - it is possible to avoid weight gain and the associated problems but being very strict with yourself over diet. Cutting carbs definitely does help with the weight gain problem and, believe me, not putting on weight in the first place is much easier than trying to lose it later! It is possible to lose weight while on pred - I have lost 37 lbs in the last two and a half years, very slowly, 2lbs a month was good! But it can be done. 

So no, you aren't going mad, you are pretty normal (as we say, whatever that is) and there is no real need to tell your doctor in terms of "is it anything to worry about".

But you are going to have a test of patience - if you don't learn anything else with PMR, you will learn that. Acceptance is a good attitude to practise. I don't mean that in the sense of "giving in", I mean it in the sense of don't waste energy railing against the unfairness and wailing about what you have lost. Look at what you have and readjust the SatNav - you are in the place you are in, and you have to work from this place on the map, not the other, sunnier, side of the valley. Rest and task management are essential - it may not be forever, you will recover and be able to do far more than at present. Just not yet. 

Follow this link and you will find a post with a load of other links to useful and reliable sources of information

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

 

Hi Sharon, it would be wonderful if once we were on steroids we felt completely better but unfortunately that isn't the case.  The important thing for you to remember is that the steroids are not curing your PMR, sadly nothing does at the moment.  They are just damping down the inflammation that causes the pain until PMR decides to go into remission and that can take anything from 2 years upwards, although there are a few very lucky people who recover in 12-18 months, but that is rare if the people who post on these PMR forums are anything to go by.  The tiredness is caused by both the illness and the treatment, and the only way to ease that is to rest, rest and rest, especially in the early days following diagnosis.  Also, steroids can increase appetite, and I have come across people before who say that they crave different foods to the days pre-PMR.  So you are not alone and you are definitely not "losing your mind", although many of us would probably admit to wondering the same about ourselves at times!

So rather than feel "discouraged", you should feel encouraged by the fact that your pain has improved, and also that you mention having good days and bad.  It is very important not to overdo things on the "good" days even if you feel like it because PMR will come back to bite on the next.  You need to give those steroids every opportunity to do their job and the only way to achieve that is to be kind to yourself and have plenty of rest and TLC. 

tuningup I really sympathise. What you are going through actually seems very much what many of us go through. The pred gave me about 80 per cent relief from the pain. My rheumatologist gave me the impression that with the pred I could just carry on as normal. He never mentioned the tiredness etc. He had never had PMR!