pmr pain not being managed after over a month now

thx maid marianne, well my symptons, pain seems to subside about 5 ,6 sometimes 7 hrs after getting up taking pred, usually i take pred bout 6:30-7 am , even though i am up by 3=4 am each morning, so i have a window that,s not too uncomfortable late afternoon, early evening, until about 9 or 10 when discomfort and pain starts up again, only sleep 2-3 hrs at night, so i guess it wouldn,t hurt to experiment, try taking 15 mg in am and 5 mg around 3pm ? 

i find if i have anything to do, llike groceries, laundry etc, i have to wait until about 4 in afternoon, and usually try to have a little rest before i do that, so is it the prednisone doing this to my body, or the pmr, that is, i understood, pred was working from 12 to 24 hrs to manage symptons, so does the affect of med wear off by 3 to 4 am, or is it the fact inflammation is more active that time of morning, so hard to understand this condition, 

When i first started on prednisone i took my morning dose around 5am to let it kick in and control the pain. As i said now i take between 6-730am and just slow.

Mariane

yes Ron, my gp admits, he is not too knowledgeable about pmr, however he is the one who thought with my symptons, on oct 12, diagnosed pmr, and started me at 40 mg,that day, no bloodwork done at time, so rheumy now says hard for her to diagnose ? down to 20mg not managing pain very well in am,s on most days, although does subside for few hrs late afternoon, early evening, but i,m afraid i don,t have complete confidence in my rheumy either, very quick,no time for explanations, just types at computer on the 2 visits i have had, and tells me to let her do the diagnosing, and brushes off many of my questions, as if irrelevant, not important, like asking about vit D, test, cortisol levels, cholestrol( i stopped taking crestor oct 5), and few other things, at any rate, i too dont think she, or for that matter many rheumy,s, from what i,ve heard,

The fact that your pain is not controlled by 20 or more mg of pred really does call the diagnosis of PMR into question.  You may have PMR but if symptoms are still giving you agony there may well be something else going on which requires a different or additional treatment.  This your rheumatologist will be in a better position to investigate when pred is no longer muddying the waters.  If I were you, and of course I'm not so easy for me to say, I would wait things out at the level you are on, try the dose splitting as the others suggested, but please don't increase - you will just be delaying the inevitable and making things even harder for yourself.  Your doctor will be back in mere days.  You can do it!

well oddly enough after a month or more, last couple days,i mean like 2 days, pain not so extreme in am, prior to that like 4-5 days ago, waking with pain in night,, now not so bad, still waking every 2-3 hrs, some pain, but not as bad, getting up 4-5 am, some discomfort, but tolerable, and strange, but when first awake in am last 2 days, pain comes on after im up ? strange ? anyway, havent done too much last couple days, rested pretty much, nap in middle of day, actually a little better, could it take this long for 20 mg to manage symptons, asked gp week ago when i saw him bout RA , said no, not RA, so i know everybody different, but i get optimistic when seems pmr subsiding, although i am getting chipmunk cheeks, and feel like hit by truck by noon, need that nap but after that feel not too bad, til bout 10 then head bobbing, fight sleep till 11 thinking don,t wont to retire too early, its a strange condition, anyway, rheumy back on monday, hoping she will see me, and that she is a little more open to questions, and understanding i am frustrated and want to know what is going on with my body, inflammation markers not there i don,t believe, cystocopy report came back clear after 3 tests showing blood in urine, gp says now that,s done,dont have to worry bout that, but i,m like ,so what causes tests showing blood in urine, never answer all your questions, and you have to take notes in, to remember exactly what you want to ask with these specialist in such a hurry , to get on with next patient, money, money money !

Your shoulder pain may not be the PMR itself. Something called myofascial pain syndrome is common alongside PMR and that can also cause spasmed shoulder/back muscles. It might respond some to Advil - as would bursitis problems, also common in PMR. 

What bothers me most is that you specify "night pain". That is something that is characteristic of the spondyloarthropathies - and in some cases it will manifest as shoulder problems:

"- Spondyloarthritis is a type of arthritis that attacks the spine and, in some people, the joints of the arms and legs. It can also involve the skin, intestines and eyes. The main symptom (what you feel) in most patients is low back pain. This occurs most often in axial spondyloarthritis.

- In a minority of patients, the major symptom is pain and swelling in the arms and legs. This type is known as peripheral spondyloarthritis.

People in their teens and 20s, particularly males, are affected most often. Family members of those with spondyloarthritis are at higher risk.

- Many people with axial spondyloarthritis progress to having some degree of spinal fusion, known as ankylosing spondylitis. This more often strikes young males.

- Non-steroidal anti-inflammatory drugs (commonly called NSAIDs) offer symptom relief for most patients by reducing pain and swelling. Other medicines called anti-TNF drugs or TNF blockers are effective in patients who do not respond enough to NSAIDs.

- Newer treatments have helped a great deal in controlling symptoms, and frequent fitness activities and back exercises are helpful."

This is from the American College of Rheumatology education site - not Dr Google!

It isn't uncommon for patients with a spondyloarthropathy to be diagnosed as PMR if the rheumy isn't being aware - but the big difference, as they point out, is that NSAIDs often help As it also says - it responds better to other medications. It also appears in older people, not just young males.

 

yes Eileen, shoulder pain worse in right shoulder, all the time, some of course in left, dont feel any in back or neck, no leg swelling , pain in buttocks often, and back of hamstrings, have had lower back problems for years, degenerative disks, naturally , herniated disk, but ive heard lots of people have herniated disks and live with it, not a lot of pain, how is this spondyloarthritis diagnosed, and why dont blood tests show inflammation , that ESR or CSR whatever its, called, what are NA

what are NSAID,s, , anti inflammatory med,s, and i had a anMRI done for back issues, early in summer, was considereing spinal decompression techinique,as my son had 10 yrs ago, and reallyan helped him, MRI showed herniated disk, stenosis of spine, degenerative and something else, rheumy saw this report, and didn,t mention anything much, also, she got a copy of physical i had done last january, didn,t say anything about that, also bone density, showed ostopenia, didn,t say anything about that, which was done 2-3 yrs ago, just dont know if i have much confidence in her so far, know it,s early, but not off to very good start

EileenH....first I have to say thank you. You have been a wealth of information! When I am up in the middle of the night with pain, it is a perfect time to research and learn, learn, learn! Knowledge is power with anything, and it is certainly true with this odd syndrome.

i often wonder if my arm pain is due to (as in yesterday) carrying in heavy grocery bags, or being on this iPad! I have no back pain, leg pain etc...I did look up the other reasons why, and they don't seem to apply to me, though I am going to try the gentle massage, which my PT suggested anyway. She also gave me some exercises to do to loosen up those arm muscles, and they are a little better today. I'm just dreaming of the pain free time! I will certainly keep all those suggestions you mentioned in mind as time goes on.

Thanks again for your wealth of info...it helps when asking rheumi questions, which I am lucky to be able to do by internet when I don't have appt.

fyi....I just bought a low voltage electric blanket, and the warmth seems to help. Conveniently, it is winter!!

lj11463:

If your pain is keeping you up at night - although that does happen, it really is unusual in PMR. I do have to say though - I still can't carry heavy shopping bags without sore arms. My rule is that I would rather go twice than carry too much! Shopping was always using a trolley and unload in small amounts into the car. If I couldn't comfortably hold something to take in when I got home - then I'd leave it for someone else. Or if it was something I could split and take half and half - I did that.

Diagnosis of spondyloarthropathy:

"Correct diagnosis requires a physician to assess the patient’s medical history and do a physical exam. The doctor also may order imaging tests or blood tests. You may need an X-ray of the sacroiliac joints, a pair of joints in the pelvis. X-ray changes of the sacroiliac joints, known as sacroiliitis, are a key sign of spondyloarthritis. If X-rays do not show enough changes, but the symptoms are highly suspicious, your doctor might order magnetic resonance imaging, or MRI, which shows these joints better and can pick up early involvement before an X-ray can.

Among the blood tests you may need is a test for the HLA-B27 gene. However, having this gene does not mean spondyloarthritis will always develop. Some people have the HLA-B27 gene but do not have arthritis and never develop arthritis. In the end, the diagnosis relies on the doctor’s judgment."

Although AS usually starts in patients under 45 - as low back problems for example - the changes seen using imaging may take a long time to develop. But if a patient has symptoms AND the HLA-B27 gene it makes the dx more likely to be correct. I think it is worth asking the question.

Cheryl - you are in a situation where you really do need to wait and see what your rheumy suggests. These are diagnoses that aren't as obvious as you may think and while it wouldn't be unreasonable to ask her if this is a possibility- don't persist with questions that aren't relevant, such as about cholesterol, vit D levels and so on. If you seem to be pestering any doctor it will get their back up - they have, after all, trained a long time and do know more about the big picture than most patients! Be a patient patient!!

And NSAIDs are Non-Steroidal Anti-Inflammatory Drugs, what most people call pain-killers. Traditional NSAIDs include aspirin, ibuprofen (Advil, Motrin, etc.), naproxen (e.g., Aleve) and many other generic and brand name drugs.

Eileen, being new to this potential disease i had never heard of, i would think would entitle me to ask any questions i wanted too, and to have the rheumy understand the fact that to me, this is a serious condition, and i believe she should have the empathy and consideration to answer all my questions, to build my confidence in her, and reassure me, she will help me treat whatever this is,i will be changing rheumy,s if something doesn,t change next visit, as i happen to know there are rheumy,s out there, very efficient, who do take the time with their patients, more than 10 min, so they can move onto next patient, and hurry you out the door, leaving you wondering about all that goes with this pmr, and if they think it could be something else, to order necessary text in a timely manner, in the event some other disease is being left untreated

Cheryl, I so agree, you need to be able to communicate and trust your Dr. 

You must also be proactive always with your own disease. Doctors don't know everything and sometimes we can enlighten them! I think I would switch Rheumis also if I was being dismissed. You are paying their salary! 

I was able to learn so much before I went in the first time, I think my Dr was impressed that I had done some homework. Yet, she did give me info I didn't know. I can sort of see after all the diagnosis is done and you are sure about exactly what you are dealing with, you must make some decisions yourself.

Hope you get someone new who is interested in YOU! Get as many answers as you can on the internet.....it is instant (of course you must filter truth and just one persons experience), it is satisfying, and you will learn lots of new stuff while you read! 

Good luck to all of us!

lj11463,  in case you haven't heard Cheryl's back story, her GP prescribed a high dose of prednisone which actually clouded the diagnosis of PMR.  She did not receive sufficient pain relief even from the high dose.  The rheumatologist now has to persuade Cheryl to reduce her dose, which she has done, apparently as much as she is able, so that an accurate diagnosis can be determined. In this situation suggestions to increase dosage or change rheumatologist are not really helpful, although that's our normal reaction to mismanagement of PMR.  The issue here is that PMR may not be the accurate diagnosis, or even if it is present there may well be something else going on which should be treated with something other than prednisone.  Cheryl has had to wait several weeks for the followup appointment, and as she is in pain this has been very difficult, but this time period might actually be necessary in order for a more definitive diagnosis to be made.  Cheryl is suffering because her original GP made a mistake.   

I hadn't heard the back story! Confused why any Dr would put someone on prednisone without a diagnosis! Is Cheryl in UK or US?

I would guess that if she's being treated with prednisone and not prednisolone she's not in the UK.  We get prednisone in Canada and the US.

Well, it appears he a) jumped to a confusion! and b) put her on too high a dose to start - that's the problem, the high dose. 

I imagine he diagnosed on clinical symptoms, which is fair enough providing you then treat in accordance with best practice. Which he was probably didn't bother to check.

Nicely put Anhaga! You are always so diplomatic :-)

Me - not so good. lol