After being diagnose with PMR a year ago, finding this HU group was truly a blessing as I've attempted to navigate this autoimmune journey. You have all been an invaluable source of information and inspiration. For the last few months I've been experiencing severe morning pain on the right side in my lower back, outer hip, buttock, and the back of my calf. I initially tried upping pred from 10.5 to 15 but that really did not handle the morning pain. I've gone for physiotherapy which provided some slight relief but continue to suffer this morning pain. Luckily I am usually free of the intense pain by about noon and can carry on with most of my low key daily activities. My question is....how do I know what to attribute this pain to? Is it PMR or could I now also be experiencing one or more of these other painful conditions?
PMR, Bursitis, Sciatica, Sacroiliac or Piriformis... - PMRGCAuk
PMR, Bursitis, Sciatica, Sacroiliac or Piriformis Syndrome
I'd suspect it may be a mix of PMR and piriformis syndrome affecting the sciatic nerve and there is so much inflammation set in by the time you take your pred in the morning it is taking that long to get relief. The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person - and so the inflammation resurfaces before the next dose is due. And in some ways it is possibly all of the above 
Have you ever tried splitting your pred dose? About two-thirds in the morning and the rest an hour or two before you expect the pain to reappear is one approach - this should extend the effect to make the morning pain less so that the morning dose has less to do.
PMR pro wouldn't regular painkillers help. ? You understand these problems better than I.
Really does sound like sciatica. ?
Thank you PMRpro for you prompt reply. I so appreciate your wisdom and insights. I have been splitting my dose almost since the beginning which did seem to work for about 6 months before this severe morning pain resurfaced. I take my bedtime dose with food at about 11:30 p.m. If I get up through the night for a trip to the bathroom the pain is often already there by about 3:00 a.m. I then try to go back to bed until 8:00 a.m. when just getting out of bed can be quite excruciating.
And thanks YuliK for your comments as well. I have been trying to avoid painkillers because I am worried about aggravating issues with my stomach and GI tract. My GP did just prescribe a topical ointment Diclofenac Cream which I tried last night but so far no help.
Perhaps paracetamol, or if you can tolerate it co-codamol. You can always take 1 500mg plain paracetamol and 1 10/500mg paracetamol with codeine if you don't deal with codeine well. You have to build painkillers up in your system for a week or so. It's no good waiting until you are in debilitating pain then taking them.
I had terrible piriformis problems when I first got PMR and took pred, especially going uphill or standing for a while. It seemed to go after a while and unless I overdo a hill it seems passive now. Sciatica on the other hand seems to be a permanent companion. Usually Dr won't do anything for 6weeks as it might "get better" in that 6 to 8 weeks. As I understand it IF it is a bit of a squished disc the body deals with the squeezed out stuff. You can do exercises to stretch your sciatic nerve. Look online. Try aNd lay down a couple of times a day with your knees/legs over a pile of pillows. And always sleep with a pillow between your knees to support them. Hope you feel better soon.
Thank you Poopadoop for sharing your experiences with me. It's helpful to hear from others who have had episodes of piriformis and sciatica. Yes, I'll look online for the exercises. Thank you for your kind wishes.
On a light note, my accountant told me had been plagued by awful sciatica; one night he got up, was wearing socks,slipped on hard wood floor, fell down a flight of stairs, and, voila, sciatica gone. I wouldn't recommend throwing one's self down the stairs, as a treatment for sciatica.
😂😂😂 omg. I did go to the loo once when I had had sciatica for 4 weeks and as I sat there was a massive cracking noise in my lower back. The pain was instantly gone. Weird things bodies. But yes. Not chucking myself down the stairs.
You are so right. Bodies are weird things.
The pain appears BEFORE 3am? Has anyone ever thought about ankylosing spondylitis? The pain can mimic PMR and even GCA - the neck problems can lead to restriction of the blood flow to the jaw in particular. It typically causes night time pain earlier in the night than PMR would but usually once you are up and moving about the pain resolves. But having one a/i disorder doesn't excuse you having something else and having both is quite possible.
Don't go mad with the diclofenac even if it is a cream - it is still absorbed and can cause gut problems if used in large quantities.
Yikes!! No one has said anything about ankylosing spondylitis. But I just read about it on the internet and I can see why you're bringing it up in light of the symptoms I've shared. Wow, there would totally be no justice if I end up having more than one a/i disorder. One is plenty to cope with. I have a rheumatologist appt. in 3 days so will see what he says about things.
Thanks for the word of caution regarding the diclofenac cream. Yes, I'll be careful.
nhs.uk/video/Pages/sciatica...
Fantastic! Thanks for taking the time to track down these exercises and send me the link Poopadoop. I'm grateful for your assistance and support. I will definitely be trying these.
Ive just got a new non opioid painkiller called Nefopam. That works quickly , smaller tablets non addictive goes down easier and doesnt cause stomach or bowl problems for me. You can take paracetamol with them too. I am waiting on results to see what this pain is in my newly replaced hip. It feels like it did when it first started to deteriorate. Every time I reduce pred something comes up that masked by the steroids.
Hi wow. Thats a throwback for me. I had forgotten about that one. I had it for back pain/sciatica/ herniated disc. I was on so many different ones. It did seem to help and like you say tummy seemed ok. It did make my head woozy which takes some doing painkiller wise.of course it could have been the combination of 4 or 5 different ones.😂😂😂
and oh dear. Not good you are getting pain after all that.
Don't think it is new, just resurrected. Or do you mean new to you? Is it good?
New for me I read up on it with people who had at 5 years ago. Never been spoken about with the other doctors. This Dr was new and very nice. Fighting for another app with her now. But we shall overcome.
Nefopam is not available in the US or Canada.
Usually it’s the other way round how annoying?
I wonder what the reason is? It doesn't look any more questionable than, for example, codeine, which is controlled but can still be bought without prescription.
Considerably safer than opiods with a similar level of pain relief and widely used in Europe. At a guess it wasn't used for pain relief originally and when it was "rediscovered" it was out of patent - so wouldn't make anyone lots of profit.
It would make a profit now with all the draconian regulations imposed by federal and state governments concerning opioid prescribing. People in chronic pain are desperate in US for something that gives relief.
But it would have to be submitted for approval and getting regulatory approval in the USA these days probably costs a bomb even if it managed it in Europe 40 years ago.
I can't find when it was first used but on a pharmacy org document research went back to 1975 so been around and presumably all side effects etc must be known. Sods law I suppose. Is it available under another name like acupan?
newdrugapprovals.org/tag/ne...
First used in the 1960s - name changed about 1970. This gives a bit of background:
ncbi.nlm.nih.gov/pmc/articl...
I flicked past a new patent for it to be used as anti nausea drug particularly for chemo. I didn't look properly cos useless on phone screen. Do they do that if it's mixed with other drugs?
Don't know, sorry.
I may investigate for neuropathy. Might be better tolerated than duloxetine which has decreased sleep. Was hoping for more sleep, 2 months in have had 55mins to 21/2 hrs (this week). Didn't take duloxetine yesterday and slept 6hrs. Thanks for reference. Will discuss with doc.
Doubt it. Couldn't find any mention of it under alternative name. I suppose no one has asked to get it approved. One page (New Zealand) which didn't open indicated it was only available in a few countries.
I found a Canadian drug company that makes and sells it, most likely to pharmacies. USA doesn't seem to have it either so not made it over to North America.
You may find a lot of websites purporting to be Canadian drug companies and they might not be genuine - fronts for selling drugs to all those uninsured Americans over the internet, but they may be based anywhere, like China.
Yes it crossed my mind as the price lists were individual portion size.
Mentioned on this page, easiest located by using find function of your browser: healthycanadians.gc.ca/reca...
That stuff sounds deadly!!!
Good to learn about painkillers that are easy on the tummy. Thanks Estellmac
It sounds like facet syndrome, also known as facetititis. I had and still have pain in the same places you describe. An MRI showed inflammation of the facet joints in lumbar spine; the nerves which exit each vertebrae become inflamed. I was limping on my right side. Pain management doctor treated it with cold high frequency sound ablation; the procedure demolishes those nerves. It worked wonders; but the relief only lasted 10 weeks b/c nerves grow back quickly, a disappointment to the Dr. He repeated the procedure, but I did not get the same sense of relief. That was in 2009; but I am still hobbling along. Also could be osteoarthritis. But only a physician with a scan can tell you. That was my personal experience.
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