Just been diagnosed with polymyalgia rheumatica which i have taken for 3 days

Dear Liz, I am so sorry you have been diagnosed with PMR it is excruciatingly painful but good old pred does have a miraculous effect on sorting out the pain thank goodness. You will probably find that your muscles have weakened before you were diagnosed which does not help. I assume if the pred works your GP will tell you to continue with it, so the three days is just a test. The blood test results also help with the diagnosis, although other things need to be discounted rather than PMR being diagnosed as such. PMR is an auto immune disease for which currently there is no cure, it can go into remission, some people only have it for a couple of years and they reckon fifty per cent go into remission in four to six years. The steroids reduce the inflammation and so only help the pain, they do not cure the illness. People say that PMR is a life changer which I would agree with, you need to pace yourself much more and not overdo things, as if you, do PMR tends to bite back. Start to pamper yourself. If you find you are tiring stop, also get as much rest as you can. PMR is a chronic illness not like flu or a cold unfortunately. 

Hi Liz, cheer up, even PMR so far don't have a method to cure but I would like to share a very possitive message with you.

I have been diagnosed with PMR this year April, still remembered I woke up that morning and fond I completely cannot get up, not even lift my head from the pillow. My body was totally painful and could not tell where. I couldn't walk, my legs couldn't lift more than 3 inches from the floor. I went into the emergency and went through about 11 hours diagnoses and the Rhumatologist told me that I have PMR and was given 15mg of pred. And now Iam on 2mg and almost no pain, almost get back my strength and can do everytihing that I used to do, of course have to take it easy.

I will post a bit more about what I have done during this 6 months of fighting the PMR when I have time. 

 

Hi Liz,

"welcome" to the club.....

I hate to say it, but in my experience you won't 'feel quite right' for quite a while. It's a fine balance between treating the condition and managing the side effects of the prednisone. Both will make you feel crappy at times, but without the drugs you won't be able to function. A rock and a hard place - one that I, and most others here, struggle with.

The hardest thing I've had to come to terms with is that I really can't do everything I used to do, and at the same pace. It does seem that most of us that get PMR tend to be the 'active' types.

If the pred has worked in the first three days it's highly likely it is PMR and you will need to stay on pred for at least several years - albeit at a reduced rate (some people on here will say that 30mg is too high even to start with but I was started on 50mg for a week). Over the next few months you will learn how to 'manage' your symptoms and the dosage.

My ONLY advice is to be kind to yourself, this is a hard one to wrap your head around.

It is impossible to answer that question - except by saying "How long is a piece of string?" About a quarter of peole get off pred in under 2 years but they seem to be at a higher risk of it returning at some later date. About half need 4 to 6 years to get off pred and the other quarter take much longer with some even needing a low dose of pred for life.

A dose of 30mg of pred won't help the "not feeling quite right" - it will deal with the inflammation quite quickly though to improve the pain at least. That is actually quite a high dose to start with - the recommendations are 15-20mg.- so the next step will be to reduce that dose to the lowest level that manages the symptoms as well as they were once this has stabilised.

Follow this link and you will find further links to a lot of info about PMR and if you look around you will find lots of posts to read 

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

The northeast of England support site is particularly good with easy to read information - all written with patients in mind by people with PMR. 

Once you've read stuff do come back and ask specific questions - as the others know I could write for Team GB on PMR but it takes a lot of time to write it all for every new friend who finds their way here!

By the way - I've had PMR for over 10 years, am now on 4mg pred and feel well and almost back to normal (as far as I can tell at least since it is a long time to pre-PMR and I would feel different anyway). I'm unusual - but I was also not diagnosed for over 5 years "Too young" and "normal bloods". Did it make a difference? No idea and we'll never know! But you WILL get back to feeling better and on another thread we have just been discussing how we feel better after some exercise - so even though you don't feel like it get into the habit of a walk every day whatever the weather. It doesn't have to be fast and furious nor must it be all in one go - several 10min walks round the block are almsot as good as one long walk. Just don't try to do much because of the 30mg pred which may make you feel you have boundless energy, it is a side effect (one I never had mind so it isn't universal). Your muscles are still inotlerant of  exercise so learn to pace yourself and don't think "I'll just do a bit more as I feel fine" - you'll know about it the next day!

I'm in to PMR 10 months and am still learning things.  But did feel so alone and confused at first.  I just now found books on Amazon, just got Kate Gilbert's book.  Helps to know what all we can possibly experience and to have people listen when we just feel we need to complain and scream.

Yes, you will go through a bunch of experiences and symptoms with the Prednisone, but it is just how it is to handle the PMR and not make things worse...well, they might seem worse.  

Be SURE to also keep probiotics in your system when taking Prednisone.  I stopped all dairy, hence, yogurt, and have some acid reflux or something in my esophagus from the Pred.  My Rheumy recommended probiotics that are kept in the refrigerator, and atleast 12 billion active cells.

So sorry you too have come to this condition, and know it is unfortunate and makes us sad, but yet it also wakes us up to enjoying or seeing the beauty in the simple things of life, so yes, you may have many ups and downs, good days and days you just have to rest.  Hopefully people in your life will become understanding... especially the mood changes with the Pred.  

Thank you to all who replied.You have all been very helpful and give me encouragement.

Liz

 

I would like to share how do I fight the PMR. First I like to introduce myself, I am 64, petite, never have any long term medication except this pred., used to be very healthy, active and energetic. I have a full time job. In this battle with the PMR starting April this year, except going to work and cook, I totally devote my time to fight this battle.

The followings are what I did and still doing (For info and share only, may not apply to every cases):

>Massage Therapy once week and now is once every 3 weeks.

>To consult with my family doctor, nutritionist and chemist to find out what I am lacking of in my diet and how to balance my system.

> I am taking omega 3 (fish oil), vitamin C, curcumin, grapeseed extract and spiral seaweed tab.

>Go to fitness club 2 to 3 time a week, except on those days that I was too painful.

>Static Electricity Massage Equipment- work on it 40 minutes every day.

>Roller massage 20 minutes every day (learn from a Re-hap center)

>Hand-on massage with herbal medicine oil on all the area affected in the morning and before bed about 10-20 minutes each time.

>Qigong Therapy Treatment.

>Practice Qigong- just start from last week.

I didn’t start doing everything all at one time. I started with one and feel the result cautiously then added another one just like start feeding baby with solid food. Now I am doing all. Averagely  I spend more than 2 hours on it each day.

Now I feel good, still have some ache but no actual pain. From April this year I already successfully reduce the pred. from 15mg to 2mg. It looks like I can be off the pred. pretty soon. I just have some Korea ginseng last week and felt good.

PMR is a chronic disease, has no medicine to cure but not necessary no way to cure. It is a result of our body’s system imbalance. I believe if I do everything which are possible to bring back the balance of my body system, then my PMR will be cured. But this is not an easy battle, because once your body is collapsed, you have to try may be 10 times harder to rebuild it than a regular person to keep healthy.

I hope my case will bring some optimistic message to you, get up and do something for yourself and please don’t sit and wait.

Oh, one more thing, when you go to find massagist, therapist or anyone for consultation, if you have doubt or feeling they have doubt, go to another one. Don’t risk yourself onto the hand of someone not exactly knowing what they are doing.

All the best to All!!

Yes, one more thing That I do is consulting a herbalist for food healing cooking, the herbalist gave me a few soup recipe. I cook soups every week.