Does anything help PMR other than prednisone?

Before I knew it was PMR and before it got terrible and I just cried, I got some help from Naprosyn alternating with paracetamol. My stomach was a mess after some weeks. What did help the most were trigger point and bursitis steroid injections.. I originally thought all my bursitis was from the gym - but I never did anything so strenuous there.

Hi 

Post diagnosis I couldn't find anything to ease the pain and the bursitis just got worse,  I couldn't even go to bed to sleep it hurt too much to lie down or get up from lying down the nape of my neck and chest were so painful.

My doctor just told me to keep taking Naproxen and look after myself, I told her I thought I had PMR, her reply was that just means 'many muscle '.  So I sat in Accident and Emergency all morning , they listened to me and gave me 20mg of steroid for the next 5/6 days, ooooh magic, I could have swung from the chandeliers.   Due to the fact the steroids had worked so well, went towards a conclusive diagnosis of PMR and the fact that my ESR and SED rates were nearing the 100 mark.

i just wondered why you are having to wait for the rheumy, could the doctor give you a prescription? 

None of those things adresses the reason for the symptoms - except maybe the ibuprofen rub but you can't put that on all over! The guidelines for management of PMR do suggest that mild cases may be managable with NSAIDs (ibuprofen and other non-steroidal antiinflammatories) but I had it fairly mildly for 5 years and ibuprofen only helped for a short time and even then only took the edg off the pain.

The bottled water idea is pointless and a waste of money - your body sets how acidic or alkaline it is and what you eat or drink in normal amounts doesn't change that. Tap water (if it tastes OK) is just as good. 

I have a magnetic bracelet(similar woo to copper) - it is very attractive and I liked wearing it (I don't normally "do" jewellery) but it made no difference to the PMR. Magnesium spray and Epsom salt baths are helpful for sore muscles if you are deficient in magnesium, that isn't the problem in PMR. You may find you need magnesium when on pred as it tends to deplete the levels in your body but not yet.

The warmth and activity both get the blood flow moving better - the inflamed arteries are narrowed so less blood gets to the muscles which they need when you are active. Once that situation is improved as your warm up the muscles feel better as long as you don't do too much.

Many people have found that using an electric blanket BEFORE getting out of bed and then having a warm shower and doing gentle stretching helps the getting going - and then, once you can move, things often continue to improve through the day. I fell out of bed, put a swimsuit on and crawled to the gym for an aquaaerobics class in a warm pool - after that I could move almost normally. I haven't had a bath for nearly 12 years - since PMR started! I'm still scared of getting stuck and I'm almost back to normal now!

Something has made your immune system go haywire - and it is attacking your blood vessels in some way and inflaming them. As a result they are unable to carry the requisite amount of blood to your muscles when you exercise, if it is really bad even when you aren't doing anything much. Once the blood flow is improved by making the blood vessels dilate you feel better because the oxygen and nutrients get where they are needed and the waste products are removed. But even then, if you do too much there is a lack of supplies and the rubbish piles up again. So doing things in small bites also helps by not overworking the poor abused muscles. Try to avoid repetitive or sustained movements - washing windows (still can't do that!) or ironing (holding the weight of the iron) for example. Identify the things that make you feel worse and either avoid them or do just a bit at a time. Iron 2 shirts and then have a rest doing something that doesn't need to be held. Devices for patients with arthritis often help a bit - you don't have to clench you hands and use the arm muscles so much. Collect things in a basket at the top or bottom of the stairs and get someone to take them up or down for you - that avoids doing stairs too much and carrying. However little shopping you are doing never use a basket, get a small trolley, take it to the car in the trolley and load it in the boot. Take in what you can manage at home - leave the beer cans or wine bottles for someone else or take them a couple at a time 

It is a question of thinking about what you are doing and whether this is something you can manage easily. Learn your limits and stick to them - don't let anyone persuade you to do a bit more when you know you can't really. These are all things you will have to get your head round even with pred - because they all help reduce the amount of pred you need and that is a good thing. What isn't a good thing is struggling to manage with not enough thinking it is better for you - it is there to reduce the inflammation and without enough it can't do that. Unmanaged inflammation isn't good for your body and eventually will cause other damage so don't worry about rushing to get off the pred. It is your friend, not your enemy.

Some people claim to have treated their PMR to the point of vanishing simply through lifestyle, diet and anti-inflammatory supplements like turmeric.  Personally I think most cases would require steroids to achieve any measure of real comfort, On the other hand I think it is incumbent upon us to do what we can to figure out what may have triggered our own particular case of pmr,  What stresses in our lives, types of food, deficiencies, etc.  There isn't much point taking what really is a potentially dangerous medication if we don't also do everything we can to improve other things about our lives so that as we wean off the prednisone our bodies can more easily stay painfree.  Don't know if I put that very well.  In my own case I've modified my already healthy diet, take supplements to deal with bone thinning which I think are helping my overall health, and have been getting some alternative treatments.  But prednisone remains the basis for my recovery, and I am grateful to it, for all its dark side!