New to this Crazy journey!

Hi Lynda, unfortunately we'd all love to get off pred as soon as possible but I'm sure you were told that it takes at least 18 months to be clear of PMR but a new study showed the average time is 5.8 years. That's not to say everyone will take that long! There is no point in trying to get off pred quickly because you'll end up exactly where you are, with all the pain back again! You should stay at 15mg for about 4 to 6 weeks and then reduce by no more than 10% of your dosage using a method developed here by one of our expert members, Eileen, known as the DSDN method. If you look it up you should find reference to it here. You need to keep an eye out for the headaches as there is a condition that can go with PMR which is called GCA, that needs to be dealt with very quickly as it can affect your sight among other things, so please be careful with that! The fatigue can be from overdoing things but also your body trying to adjust to the quick reductions that you're doing. PMR causes fatigue and if you overdo it, you will get very tired! No one wants to be on this journey, but it is a journey and you need too take care of yourself and stay on the doses until all your pain has cleared before dropping by 10%, otherwise you will end up rollercoasting. Best of luck with it all!

It would be very unusual if, having reduced your Pred. by 50% in a month, you did not have a recurrence of symptoms. Was this reduction what your GP recommended? Has the 9mgs. given you pain relief? 

Weight gain is one of the many possible side effects of Pred. and it's the one that seems to exercise people most. It has been found by some that drastically reducing your carbs intake helps a lot. Being naturally bony I was quite happy with  chubby cheeks except that I kept being told how well I looked! I was started on 30mgs and the pain went as though by magic. As far as I remember the chubby cheeks began to disappear at doses below 7 but that's just my experience; we are all different as you will be told over and over again by other patients.

You will get lots of sympathy with your anxiety to be rid of Pred. but it the only thing that will give you a half decent life while the inflammatory disease lasts. again, different for everyone but the optimistic 18 months to 2 years that some doctors predict has not been found to be the general experience. mine lasted 3 years and five years ( 2 episodes three years apart. ) I have been well now for five years and, as far as I can tell, have no permanent adverse effects. 

You will get lots more from others on this forum. 

Best wishes.

I can only echo what the others have already said. Just two things it emphasise - It will take time BUT you must never consider Pred as your foe, maybe not a close friend but as an acquaintance you need for the eminent future. For the record, as a male (78) which generally speaking has a far better record of reducing somewhat quicker, it took me two and half years. I started at 30mg and stuck to the DSNS method which worked well for me. I had a mantra that I would rather be a Tortoise than a Hare?

Second you must never relentless aim for zero in the quickest possible time, it will always come back to bite you again and in the long run you will be taking pred for a lot longer! Stick to the 10% rule!

Learn to ‘read’ your body, please don’t ‘rush’ and be patient – you will get better. Even after you get to ZERO it takes time for your body to get back to ‘normal’ - in my case just under a year.

All the best on the journey and welcome to the club nobody ready wanted to join - John

Steroids are a life saver with PMR.  Cut out potatoes, rice, pasta etc and eat more protein and cut out any obvious sugar and you should keep your weight steady or lose some.  Reduce very slowly as mentioned and then the body can adjust to the drops more easily.   I also agree it's better to not be impatient and be a tortoise not a hare!

Don't slate pred - it isn't as bad as you think. It will give your life back and when you know how the side effects can almost all be managed fairly well.

I had PMR for over 5 years before I even got the chance to have 15mg of pred - and the relief was so enormous I thought I had died and gone to heaven! I am unlucky in that I am one of the 5% who probably have PMR for life - but I have no apparent side effects from pred now. I have had them - I gained a load of weight but by cutting carbs I lost 35lbs of pred/PMR associated weight - some of the weight had gone on long before I got pred because of unmanaged PMR and inability to walk or do any other exercise. But you don't have to exercise to lose weight - cutting carbs a lot will do it too and it also calms down the voracious appetite.

Pred changes the way we metabolise pred and our blood sugar levels shoot up, insulin release is triggered and the BS level falls too far - so we crave carbs to sort that out. And the jolly roundabout continues - while the excess insulin deposits the excess sugar as fat in the usual places, face, back of the neck and midriff. Cutting carbs drastically can help avoid that - as well as reducing the risk of developing steroid-induced diabetes.

As you have already been told PMR isn't an illness where you take pred for a few weeks and then stop - it is a chronic autoimmune disorder that lasts, on average, just under 6 years. Fewer than 20% of patients are able to get off pred in under 2 years and a few take much longer than 6 years - but the bulk of patients are able to get off pred in 4 or 5 years or so. 

Many so-called side effects of pred are just as likely to be the PMR, believe it or not! Bad temper, mood swings, depression, fatigue etc can all be part of unmanaged PMR - especially the fatigue which is integral to autoimmune disorders. These side effects are not changed by the pred - it just manages the ongoing daily dose of inflammatory substances shed in the body every morning. That relieves the inflammation, swelling and pain to allow a better quality of life in the meantime until the cause of the PMR burns out and goes into remission. Which it does for most people - unlike most other autoimmune disorders such as RA, lupus, other forms of vasculitis or MS. Nor does PMR kill or maim and we don't develop it until we are over 50 in the vast majority of cases - the others I have listed affect young people and some can kill.

GCA, giant cell arteritis, has been mentioned: it is a close relation to PMR and you are more likely to progress from PMR to GCA if you do not take pred to manage the inflammation of PMR. In its worst form GCA can affect the blood flow to the optic nerve and if it is bad enough the optic nerve is damaged, in the same way a stroke damages brain cells, and you can go blind if not treated very very quickly with high dose pred. The doses for GCA tend to 60mg.day and sometimes more - a very different matter from living with the low doses required for PMR.

I was going to give you a link to our resources post - it seems to have disappeared! Very helpful People at Patient!

However - here is a link to a post on another PMRGCA forum which explains in a slightly lighthearted manner a bit about living with a chronic autoimmune illness

https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...

and here is a link for the Dead Slow and Nearly Stop approach to reducing the dose of pred

https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

which many people on the forum have used successfully - it makes reductions in the dose less uncomfortable and reduces the risks of flares. If you try to rush off pred you will undoubtedly have a return of symptoms - which you then either have to live with or you need a much higher dose again to manage them. Do it too often and it can get harder to get them under control and you need higher and higher doses.  

So sorry you have joined this journey.

You have found a wealth of knowledge and support.

MariGrace

I have been on the roller coaster for two and one half years. Mid June I was taken off the two and one half mg of prednisone I had been reduced to for 6 weeks. One week later I could feel it coming back. So disappointing!!😩. One of the worse things for me is that my sed rate climbs very slowly so I have to suffer for a long time before Dr. puts me back on Pred.  It’s like my blood has to prove what I’m feeling. Dr put me on a nonsteroidal anti inflammatory and it isn’t helping. I am running back and forth weekly for blood work and sed rate is climbing slowly. I wish Dr. could truly know how miserable it feels. I hope he ok’s the Pred. soon because I have spent the summer so far stiff and sore like I’m 100 years old. I am only a young active 59. I fear that this will never leave. I don’t think anything works except prednisone (scary).

Best of luck to all of you!

                Patti in Ct.