Recently been diagnosed w/pmr. Was put on prednisone (much to my dismay). Want to get off it asap. Started @15mg. 1 month ago. Unfortunately, it helped within hours. I was blown away! However, I want to stop soon so I've gone from 15 to 12.5 to 10 then to 7.5 within 1st month. That's when it seems to have gone south! Pain&stiffness all over again. Per doc, I'm back to 9mg. Am I gonna be on an eternal rollercoaster? Ughhh. I've already gained 4 lbs. NOT GOOD! I'm not even eating more. Also, I've been getting lots of headaches and am quite fatigued. I'd appreciate any advice or input anyone out there could give. Thx!
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.
Thank you BettyE for your quick response! I wasn't sure I'd hear anything as it appeared this forum had closed. Yes, the reduction was per my doc. Actually, we've been playing w/dosage on an every other day basis! I'm just very confused and a bit overwhelminded by all this. I already suffer from extreme anxiety, and it's at a fever pitch while trying to navigate my way through this whole thing. Any suggestions would be greatly appreciated. I'm only one in family who's had to deal w/this, so I'm kinda on my own!
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.
"as it appeared this forum had closed"
What gave you that idea? I must make sure the Chief Moderator hears!
Don't play with dosage - stick on 15mg until your symptoms are improved by 70-100% and fairly stable, probably 4 to 6 weeks. If your blood markers were raised - until they are down in normal range or at least very close. Then reduce by not more than 2.5mg - most doctors will say overnight but I have given you a link to the Dead Slow reduction which helps a lot. No reduction should be more than 10% of the current dose so 1.5mg would be better but complicated, the Dead Slow approach lets you do a bigger reduction unless you are very sensitive. But if the reductions are too big at any one time you will feel it as steroid withdrawal pain and panic you are having a flare or you will miss the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. So you have to stick at the starting dose in order to know how good you can get your symptoms.
HI Betty,
i had to laugh reading your post. I'm 66 and never weighed more than 100 lbs and gaining about 15 lbs everyone commented on how great I too looked. After growing up being called bones and as an adult always being to,d I'm to skinny I started to like the weight gain.
When I tapered down I lost all that I'd gained and everyone noticed that too.
now unfortunately started back on 20 mil for two weeks so here I go again, up the PMR roller Coaster!
good luck to us all
Sibcerely,
Sharon
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.
Lynda, please believe me nobody wants to be on Prednisone, but it is the only thing that controls PMR. Rushing to get off it leads to a flare and you end up taking more Pred than if you used the DSNS method. And yes you might yo-yo up and down before it is over if it is ever over, but I can guarantee you that you will yo-yo much more rushing. Good luck on your journey, stay positive and try to smile, it helps. ☺️
I wish they would keep up to date! Dropping you from 2.5mg to zero just like that was always heading you for a problem - there are plenty of people who need just 1mg for their pMR. And add to that you have been on pred for some considerable time - he could well have caused an adrenal crisis doing that.
And the blood markers are really very unreliable - not only can they be raised and it was not a flare but they don't rise even with flare activity:
https://www.ncbi.nlm.nih.gov/pubmed/25877501
And he needn't say "oh that is GCA, not PMR..." They are the same disease, just different levels/expressions.
To be honest - I'd be looking for someone a bit better informed.
Hello Lynda - I was recently diagnosed with PMR and have been taking 15mg pred for just under 2 weeks. It looks as though you're a couple of weeks ahead of me in terms of diagnosis and treatment. People on this forum are so helpful and knowledgeable - they really have helped me navigate through unknown waters.
I can't give any advice as I'm new to this too, but it does sound as though you may have reduced the pred too quickly - although I fully understand why you'd want to. I too was dismayed when I had to start taking pred (it seemed like the end of the world - and I'm still getting used to the idea). I can't wait to get off it, but I realise now that it will be a long slow process - there are no shortcuts, unfortunately. Having said that, hopefully we'll both get off pred in the shorter timescale, rather than the longer one!
Hi MhairiP, so glad to hear from a fellow "nubie"...lol! Let's stay connected as we'll be able to compare notes. Good luck to us both!
👍
Careful though - don't fall into the trap of "because she's managed x, y, z I should be able to do it too"
Everyone has their own journey - we may touch base now and again but the bits inbetween may be very different.
Don’t worry or get anxious about pred.It’s much too soon to be reducing . It will only come back again with extra clout . 4 lbs isn’t a lot and pred does make you retain water so it could be water retention . Just keep an eye on your weight once a fortnight. I actually lost weight when I went up on my dose last year and that was because I could move around more with pain relief . Headaches and the fatigue could well be due to the sudden drop of pred. That’s quite a jump you did with the dosage! Especially as you have not long been digonsed . Take care .
Be carful and don’t go on silly fad diets . If you cut back on carbs too much which could even effect your organ health in the long run your only put it back on twice as quick. A good balanced diet is all you need. I lost weight slowly and kept it off by eating whole grains and good quality foods in general and keeping pain free is also key . If you go on fast quick fix diets which don’t work in the long run your just upset your health more. Keep away from junk foods is key snack on things like oatcakes. Drink plenty. Look up the NHS diet which is a good steady healthy balance diet.
Thx veronica for getting back to me in a timely manner! So you really think I decreased dosage to quickly? I'm (along w/doc) are still kinda "playing" around with the dose. I have to say, at the risk of sounding full of myself, sometimes I wonder who is the patient and who is the doctor!😕I feel like I'm doing all the recommendations based on my own research! Oh well, I guess now-a-days you have to be your own advocate. Anyway, I took 5mg. this a.m. and just took 3.5mg 1/2 hour ago. I'm hurting. Trying not to take anymore today, but that remains to be seen.