Ihave had these two ball and chains for about 3 years now. I am on and off prednisone. The weakness in my legs seems to be getting worse, geesh I am only 63! Weaning off pred for 3 month for a break--Lyrica helps but when the inflammation gets going its awful.
If anyone has any tips to le3ssen the pain,strengthen the legs it would be helpful. They tried me on methotrexate but it damaged my lung so thats out.
Medical marijuana doesnt work for pain either.
Thank you for any info you can give me.
Cheers
Wanda
Hello
I don't understand why you would be 'coming off Prednisone' if you currently have inflammation and pain. If you have Fibro & PMR however that would certainly complicate things and the Pred won't assist with all aspects of pain - but I'm sure if you give a few more details some of the in-house 'experts' on this forum will make some helpful suggestions.
For a start, if you have PMR you are better staying ON a low dose of pred long term than stopping and starting. Each time you stop the next start is potentially more difficult. You should wean down far enough to find the lowest dose that manages the symptoms as well as the starting dose did - it is always your guideline as it will take account of the fibro pain too. I have been on pred at one dose or another for 8 years, that is unusual and most people get off pred in about 4 or 5 years. But it hasn't damaged me yet...
Your doctor should have given you access to a physiotherapist and a set of exercises to help avoid muscle problems. The Leeds research group in the north of England is carrying out a clinical study on the effects of steroids in PMR and including an exercise programme - patients get a fitbit and are encouraged to walk - at each visit they are set a new slighly higher target. Walking really is excellent exercise in PMR and something you can do at any level - and improve those levels. I did aquafit in the 5 years I had PMR without pred and it kept me reasonably mobile - the earlier I did in the day the better the effect.
PMR pain does not respond to pain medication. Case in point I am on Morphine and Percocet for lower back pain and it has had no effect whatsoever on my PMR pain. I also tried Methotrexate for a month and it affected my liver so I had to get off of it. But in one month I found absolutely no help from it anyway.
One of the things I've found - if I've overdone it and get an ache round the neck or round legs and knees - is a magnesium spray. I use it on the relevant area and find it helpful. Good luck!
Hi wannie, I will not reduce if I have any PMR pain at all. I walk every day probably more than most people would think wise, but stop at any sign of PMR pain. Started at about 10 minute walk, rest till I felt up to the next 10 minute walk, now I just walk. I do think we have to readjust our endurance. Good luck getting over your fatigue. Try and keep a smile on your face. 🙂
Hi Rimmy
My doctor is concerned about side effects particularly bones, each year I have to go off pred for 3 to6 months. Usually it is when inflammation rate is lower than 68 ---Thank you so much for caring!
Thank you. I have decided to go back up to 10 mg if that doesnt work
to 15mg, because the pain is nauseating. I can hardly flippin walk it pains me so.
I write poetry and prose and I am going to post it here about when a flare comes sneaking up on you..hugs to all
I will stay happy and not let fibro and pmr live in my mind rent free! lol
Hi wannie, I worry about my bones, I am a ski instructor in the winter, yes we do have falls not many, but some disastrous ones! So last year I had a bone density scan and will discuss the possibility of one before this season. Walking, taking supplements, reducing Predinisone and hoping for the best with a smile on my face! 🙂
Hi Eileen
I think you have been on this forum a long time, and I am grateful as I have been reading for a long time. You have a tremendous insight.
I will google Leeds -here in Canada they dont send you to a physio guy
but I have been walking a lot even tho it hurts! lol
Thank you for your many contributions and for keeping us all sane!
cheers
Good for you wannie, I have a love hate with Predinisone, I often think of the poor people who had PMR before Predinisone, then I am happy to suffer the side effects.
We get through this and come happier and stronger out the other side, with a BIGGER smile on our faces! 🙂🙂
Hi again wannie
I for one cannot see the point of suffering pains if a temporarily higher dose of pred will alleviate them. The major thing I have learnt from the experience and expertise of many great contributors to this forum - is that we need to listen to our bodies and if we need a higher dose again for a while to reduce inflammation then that's the way the cookie crumbles. Yes side effects can be a problem and for some people more difficult to manage than others - but many aspects of these can be managed to an adequate extent in the longer term. I hope you feel much better soon !!
Never heard of this but will look it up.
Thank You for sharing!
You can do it! My dr put me on Actonel for my bones but I could not tolerate it. Calcium supplements gave me a kidney stone. So........only alternative
to save my bones is to go off periodically , live with the pain and then go back on when it gets unbearable.
I don't ski , I toboggan ! lol
Love to ski, started as teenager still enjoying every day!
Really not sure what he hopes to achieve with such a short drug holiday. I have been on pred for over 7 years - no change in bone density. And that was without any such brief breaks.
And what measure of inflammation is the 68? If it is ESR it is extremely high even at that.
And should also have said - if the pain is so bad you can't exercise - that is an even bigger risk factor for osteoporosis than pred at a consistent low dose. Below about 7-8mg you are only taking a similar level of corticosteroid to what your body makes naturally anyway and the side effects are much reduced.
While risendronate (Actonel) is better tolerated than alendronic acid - it is still not the only option.
Hiya, Have just read your poem and picked up on this post. I cannot see that weaning off pred for 3+ months each year is helping you in the long term. If you have been on pred for about 3 years (on and off) I would imagine your body is no longer producing its own corticosteroid so stopping pred quite quickly is likely to leave you in more pain than when you started. As Eileen has said, weaning yourself down to a lower dose must be the better option. Are you using the Dead Slow approach to reducing pred?
From time to time I soak in a warm bath with Epsom salts - an easy, pleasant way to absorb magnesium. It is possible to avboid bone thinning effects of prednisone by taking the right supplements, eating right and getting appropriate exercise. I dispute the value of a drug holiday from prednisone. I started pred at 15 mg in mid-2015. i am now at 1.5 mg which any doctor should admit is unlikely to cause any significant side effects. I was down to 7 mg by the end of 2015, and below 5 mg by the following spring.
Where in Canada are you? I just ask my GP for a referral to a physiotherapist and have never been refused. It's covered by our own insurance, but if one is prepared to wait there is physiotherapy available with medicare coverage.
Hello there,
Thank you for your response. I am in Ontario, so will ask my gp for a referral.
Thank you for letting me know.
I don't think this PMR ever gets beat, started 3 years ago, on pred starting,at ...;wait for it 80 mg day! Anyways reduced reduced reduced
then off for 6 months, the pmr was so bad I could hardly walk or get out of a chair. Back on but in lower doses, for 6 months, off again, on again...
blah blah. It just keeps turning up like a bad penny!!!
I try to meditate and focus positively, I sew clothes for charity to keep my mind off of it, sometimes thats hard!
Thanks again, wishing you wellness!