FIBRO AND PMR
Posted , 8 users are following.
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
0 likes, 20 replies
Rimmy wannie
Posted
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.
wannie Rimmy
Posted
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!
Michdonn wannie
Posted
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! 🙂
wannie Michdonn
Posted
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
Michdonn wannie
Posted
EileenH wannie
Posted
And what measure of inflammation is the 68? If it is ESR it is extremely high even at that.
EileenH
Posted
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.
EileenH wannie
Posted
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.
wannie EileenH
Posted
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
amkoffee wannie
Posted
celia14153 wannie
Posted
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!
wannie celia14153
Posted
Thank You for sharing!
Anhaga wannie
Posted
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.
wannie Anhaga
Posted
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!
Anhaga wannie
Posted
Hi Wannie. Coverage does vary between provinces, of course, but I imagine Ontario is more likely to have availability than Nova Scotia, where I am!
You need to stay on pred, at a reasonable dose of course, for as long as you need it. I find many doctors don't really understand the idea of slow tapering to the lowest dose which will manage the symptoms until PMR goes into remission. Pred doesn't cure anything, just reduces the inflammation so you can have a life! But PMR nealy always goes into remission after a few years. About a year ago I'd got to 3 mg. Now I'm at 1.5 mg. My doctor suggested I use up my tablets and stop and see what happens. Not likely! I did try to reduce a little faster, so I could be at zero pred by the time my prescription ran out, but the evening I could hardly get up from the floor after exercising, just like the bad old days before diagnosis, I knew I really am not ready for zero pred. She may be disappointed in me, but I'm actually quite happy that I got so low in two years, and have not experienced any flares more than what I just described - sorted for me by taking 2 mg for two days, then returning to 1.5.
The dead slow plan is on this page:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
If you do see a physiotherapist it is very important it be someone who understands the limitations of PMR because our muscles are intolerant of the usual repetitive physio exercises. But there are many other things a good physiotherapist can do to relieve a lot of the things which cause us pain, such as spasmed muscles.