New to this great forum. I was diagnosed last August, started on 15 mg. Prednisone, wasn't doing much, so was referred to rheumatologist. He (and I) think I also have GCA -- headaches and blurred vision. Vision problems scared me, so saw my ophthalmologist, who referred me to cornea specialist (different treatment coming for my eyes - autologous blood serum treatments (had to look it up!) I digress -- my question really concerns my back. I have had lower back pain for a year and a half. The PMR makes it worse, and even on 60 mg. of prednisone, the back pain is awful. I'm at the point that sitting in the recliner is the only place that's comfortable. I can't walk more than about 20 feet when the pain starts, so basically I can't do anything.
Does anyone else have LOWER back pain that disables you? I have some osteoarthritis according to x-rays, but it's not bad according to rheumatologist. Sorry to be so wordy, but if it's not PMR, I'll be back at square one! I am so grateful I found this blog, and I wish all of you better health in the days ahead.
ValB
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valb232
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Back in 2011 I wrote that I had "Problems have arisen with the side effects of the steroids, to the stage where I am unable to walk more than two car lengths because of consistent and sometimes excruciating back pain, now have a Blue Badge Parking Disc.
I was recommended to try Bowen Therapy and ignored it until I was nagged into trying it. I wished I had listened the first time as it worked for me. If you want to know more look up Tom Bowen and read the story and then if you do decided to try it make sure you have a registered Bowen Therapist.
Joanne, Bowen Therapist, got me out of the wheelchair (which was relegated to the garage) then I stopped use of zimmer frame and only used walking stick.
I really think that you need more comprehensive tests, perhaps an MRI Scan? In my experience your dose of 15 mgs would have eased the pain somewhat and the brief high dose for suspected GCA substantially, if it was arthritic in nature. I have Osteoarthritis in my neck and lower back. I find that being on my feet for any length of time causes substantial lower back pain but only now that I am on 5 mgs.
Whatever is going on with your back needs more investigation. If it is one of those things that we somehow have to live with then at least you should have that attention of a very good physiotherapist and perhaps a pain clinic. Let us know how you get on. Don’t put a brave face on with your doctors.
I had lower back pain despite pred and it is caused by myofascial pain syndrome which is more common alongside PMR although I had had it for years before the PMR. PMR just made it worse. An orthopod told me it was "wear and tear" of the lower spine and I would have to live with it. At the time I couldn't walk or stand for more than 10-15 mins without excruciating pain that made me feel sick. I put up with it for a while but ended up being admitted to hospital when I developed a really bad episode of sacroiliitis and could move at all without pain. I reacted badly to the drug treatment they used and as handed over to the pain clinic - who identified that my entire back musculature was in spasm. This had pulled the joints together and they rubbed and became inflamed. All it needed was some hands on examination. MRI and x-ray don't and while MRI should show inflammation all they really do is rule out other potential causes.
I have never been up to 60mg pred - but all the doctors I see related to PMR and MPS use local steroid injections as well as other techniques including manual mobilisation and massage and needling. I'm lucky, my GP is rheumy-trained and she, the orthopods, rheumy and Pain Clinic all sing from the same hymnsheet!
Like jinasc, I used Bowen therapy which kept me upright for the first 5 years of (untreated) PMR. It is worth a try - if it will help YOU, you will know in 3 sessions, it may not be perfect but there will be a difference. It may not help, you have to try to know.
But what would worry me more is that you may have a spinal stenosis - have you had an MRI or CT or just the x-ray? I would have expected a rheumy to have thought of that.
I've had low back issues for many years. As with most people in the senior years, compression of the lower spine is pretty normal. Bowen helped, but the best thing for me is keeping a regular exercise regime to strengthen back muscles. My back tells me if I don't work on it.
Sorry to hear about the misery you are in. I totally understand it. I have had back issues most of my adult life. It only got worse the older I got. However, I have noticed, since PMR and prednisone, my back is very much worse. I have been experimenting with aleve and my prednisone.( I am aware of the dangers of Aleve) I have found I have two different problems. One is my actual back problems and Aleve seems to help with that. The second is pmr affecting my back. Aleve does not help that but upping my pred. on really bad days does. So the dilemma is; when the pain flares, which is it the back or pmr? After about 6 months of working on this I have gotten better at distinguishing between the two.
Last year I kept complaining of excruciating pain and they finally did an mri and It showed I had a small fracture at L1 and that was the source of the pain.
I agree with others and you probably should have a really thorough check to make sure nothing more is wrong.
MRI I have had GCA for almost five years. Last September I had to cut a holiday short because of pain in my back and legs.
I have an excellent Rheumatologist who I see every three months, he thought it was Osteoarthritis and I should have an MRI I refused because I am claustrophobic but settled on an X-ray that confirmed his diagnosis. He advised Hydrotherapy and pain control, neither did much to stop the screaming pain. I found somewhere I could have an open MRI and saw a Spinal Surgeon. We gazed at a few of my 72 pictures at he showed me I had had a ganglion that had become inflamed, I also have a degree of spinal stenosis. It is essential you get the right diagnosis
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Down to zero and having arm and leg pain
Lower back spasms
Lower Back Pain
GCA Osteoarthritis 
