As a 56 year old female,1 year post menstruation I suddenly experienced severe pain in my hips trying to turn over in the night. Symptoms quickly got worse spreading to my shoulders and upper arms and my joints seemed to be snapping and cracking so bad in the mornings. I thought this was the next stage of the menapause following on from hot flushes and adrenaline surges. I searched the Internet to see if anyone else had experienced these symptoms during menapause and found many posts with similar symptoms. After an appointment with my Gp he suggested I may have poly myalgia and sent me for blood tests. Esr was within normal limits but Crp was raised in double figures. He suggested I start prednisone to confirm diagnosis but I was really reluctant to test the drug as I knew I couldn't just stop taking them and preferred to take ibuprofen which I could adjust according to need. However i was concerned as I ibuprofen was necessary for pain relief at different amounts but at least daily for the previous 6 months ! ( retired nurse with reluctance to take drugs unless absolutely necessary !) I asked the Dr to check my hormone levels and found my oestrogen levels confirmed menause. After discussion with my Gp he agreed to try low dose Hrt with a follow up in 6 weeks. I definitely felt better without hot flushes and adrenaline rushes, also pain in my hips disappeared, more importantly I was sleeping! However, the pain in my shoulders, upper arms and neck continued ( both sides but more predominant on Left side possibly because I am left handed and use this side more readily) at my follow up visit my Gp tested for rotator cuff compression/tear and I agreed to a one off injection of prednisolone into my shoulder . Day 1 I just wanted to sleep, Day 2 I felt really sick and experienced an episode of blurred peripheral vision, but day 3 I felt good and no pain except in my left shoulder when moving my left arm out to the side and above my head and left Achilles' tendon area. Although it's still early days, my response to prednisolone may support my poly myalgia diagnosis and perhaps offer an alternative medication route, more importantly I am back to taking no tablets at all for pain relief! My follow up is due next week .
Prednizone was a life saver for me. Ibuprofen sent me to ER. Horrible stomach problems, I thought I was having a heart attack. I started at 15mg of Pred and dropped to 12.5 after 6 weeks. Then 10mg the next 6wks. I'm stabilizing at 5mg and happy.
I can do everything. I just rode my road bike 100 miles in June.
Not everyone has it like I do, many have side effects. Guess I'm lucky. Yes, I bruise easily, but that seems to be it.
First of all get to a rheumatologist. Move beyond a GP. You will get lots of info on this site. Try to determine what is truly post menopause issues and PMR. I'd stay away from shots until the PMR is determined. PMR can affect many parts of the body.
Take one thing at a time.
Firstly, as far as both Prednisolone and Prednisolone is concerned, you CAN definitely "just stop taking them" if the dose given is a trial dose prescribed for just a few weeks when seeking confirmation of a suspected PMR diagnosis. Many people with other conditions, such as asthma, are given a short, sharp burst of Pred for about 4-6 weeks.
Secondly, long term Ibuprofen also carries its risks to your stomach, liver and kidneys, especially when taken for as long as you have. I took just a small daily dose of Ibuprofen for many months during my early non-diagnosis days just to enable me to get off the bed - later that year I was diagnosed with chronic kidney disease. Coincidence maybe, but after my experience I would advise everyone to steer clear of it for more than just a few days.
I have in the past come across a few people for whom a PMR diagnosis has been changed to the diagnosis of a hormone deficiency - this can occur especially in those people entering or going thorugh menopause. There is no definitive test for PMR - it is mainly diagnosed after the exclusion of other pssible causes, and a hormone deficiency is among those exclusion tests that should be carried out especially if the patient is of menopausal age. Another necessary test is for Vitamin D deficiency which can lead to pain in similar areas of the body as those of PMR. Yet another exclusion test is rheumatoid arthritis, although sometimes that test can produce a false negative.
Although both the ESR and CRP blood tests can rise due to causes other than PMR, your CRP being found to be in "double figures" does point to inflammation going on in your body rather than a hormone deficiency.
It must be a relief to have such relief in your pain following the cortisol injection, and I do hope that improvement continues for you. However, if it doesn't, then please don't hesitate to agree to your GPs earlier recommendation of at least a trial dose of Pred.
I had similar pain before being diagnosed with PMR I was told I had a virus. It got worse and worse. When I took pred it was like a miracle. As Mrs O says you can take pred for a week or two without it affecting your adrenal glands. If it has not worked in a week it is unlikely to be PMR, so you have not lost anything. If it does work it really is a wonder drug.
Thank you for your feedback information which is really helpful and greatly appreciated.Its great to hear how well you have all been doing after taking prednisolone. Has anyone managed to stay pain/inflammation free when you have stopped taking prednisolone? The relief from pain every where else in my body after the one off cortisol injection is amazing ,time will tell if the pain returns or inflammation settles.Will certainly just take things one
step at a time pam7653
time
Yes, Pam, many of us have experienced PMR and/or GCA going into remission and being able to discontinue steroids, including a couple of us who still 'hang around' on this forum in the hope that we may be able to help those still struggling from our past experience and give reassurance that there is life after PMR/GCA!
Thanks Mrs O you have just made my day! Hope restored
Handbrake,before pred I could hardly get out of bed.I could not even push open my car door had to push with my foot and I drive a Mini.After starting on the pred my pain is gone completely,yes I do have a few side effects but compared to the pain it is nothing. No one wants to be dependant on meds but give it a try I am currently on 9 mg and havenot had a flare slowly reducing.Good luck let us know how you do.
Hi Handbrake,
I too wish I knew what is actually inflammed/hurting...
For me, I feel as if I have 8 pulled muscles, but as I researched, my pains happen to be in all areas of bursa's. Didn't know we had so many bursa's. My shoulder rotator cuff area (hurts to raise to side and rotate inward).
My hip area, it's my Hipflexors (I can not lift legs from standing postion higher than 8-10 inches, must lift with my hands to get in car or get dressed), also my inner thigh (groin/adductors) and my hamstring area of butt, ear butt bones, hurts sometimes sitting in car or chair in mornings.
All are bursa spots. Sometime pain refers (spreads) down arms or thighs.
I've tried to get answers too, is it tendons or joints, or fluid in between, muscles connections points, muscles, or is this also different for each person? Because there is a bursa syndrom that I wondered if I had, but since it's BOTH sides then they say PRM.
Where exactly is your pain?
For which we are forever grateful.
A question in your " remission" do you still have some pain either from time to time or chronic but bearable and in the background.
Denise, I don't have actual pain that is reminiscent of PMR but I do often wonder whether I have certain after effects from the GCA aspect. For instance, I have a lot of sensitivity in my feet, particularly my toes which become inflamed and my latest podiatrist feels is linked to vasculitis and, of course, GCA comes under the vasculitis umbrella. I have never got back to walking the miles that I used to walk pre PMR/GCA without some discomfort setting in around the area where my legs meet my body. However, any such discomfort is more than likely due to anno domini - after all I am now some 10 years older than the days before PMR/GCA struck! But certainly no "background" pain suggestive of PMR. I also have friends who have recovered from PMR without any recurring pain. So you have lots to look forward to.
Hi Layne, sounds like you are having a really tough time. My pain started in my hips and shoulders, the pain when trying to turn over in bed was unbearable and getting up in the morning was a nightmare, I began dreading going to bed! This quickly spread to my upper arms and the left side of my neck. HRT has relieved adrenaline surges etc so I feel more able to cope. Dr has checked my movements and thinks I have a rotator cuff issue.hence the cortisol injection I'm currently pain free apart from rotator cuff which may suggest I have a tear rather than compression.i have also developed discomfort in my left Achilles area. But at least I'm sleeping and resuming most of my activities for now
Sounds very encouraging...Yeah!!
It depends - most of the pain and stiffness is muscles but there can also be inflammation causing synovitis and tendonitis. Google them to find the details.
I had been on HRT for some years and finally stopped after the latest scare about 12 years ago. Within months the symptoms of PMR started - and I really don't think it was entirely unconnected.
While pred may have some nasty side effects - so does ibuprofen and if the 2 I'd rather take my chances with pred if I have to take it every days for years!
Just to give you an update post follow up! I continue at the moment to be pain free after my injection and although I feel some tension in my shoulders and upper arms my range of movement is improving daily. Gosh I feel as if I've got my life back. I understand that the injection can last up to 12 weeks so will see Gp again in September or earlier if pain returns and will consider starting oral prednisolone.
Glad to hear the injection is continuing to give you good relief in your pain. Just be careful not to overdo things just because you feel so much better.
Thanks for your wise advice Mrs O, It is tempting to overdo things when you feel well! Cat naps rule haha
Update post injection,after 8 weeks of relief from injection My PMR symptoms have returned with a vengeance so have taken your advise and after seeing my GP have started 15mg prednisolone daily.. After my second dose the pain is definitely less however last night I was woken up by a burning sensation in my lower legs and feet.. Has anyone else experienced this?
I used to have what felt like roasty toasty feet in bed when I WASN'T on pred - so it must have been the PMR. I slept with my feet outside the covers! I still often stick them outside the covers now with no other symptoms and on a low dose of pred but they are never as bad as they were then.
Unfortunately if the symptoms return in force it can often be a bit harder to get them under control the next time so be patient but glad to hear that even though it does appear to be PMR (decided minus) your doctor is being helpful (decided plus).
The next step will be to reduce to the lowest dose that achieves the same result as you get after about a month on 15mg - you need to clear out all the excess inflammation before looking for the dose that manages the daily dose of inflammation. Cytokines are shed in the body at about 4.30am and that is what causes the morning pain and stiffness - if I got up to go to the loo at 3.30-ish I had no pain or stiffness but when I got up about 6am I could barely move! The sooner you take the pred after that the less work it has to do - a bit like taking pain relief BEFORE the pain starts to get going again - and a study in Germany found the optimum time to take the plain white pred tablets was 2am! This achieved the highest blood level of pred at about 4am, the inflammation never started to get hold and a lower dose was needed. A version of pred with a coating was developed that releases the pred 4 hours after taking it - unfortunately it isn't available in the UK, it is far more expensive than the plain sort but I do know a few people who take their pred in the middle of the night because they wake up anyway. I don't live in the UK and I am on the Lodotra formulation and I think it is great.
Thanks for your really helpful information Eileen, I did wonder what the half life of prednisolone was ( how long each dose stays in your system) so I could work out the best time to take it in the morning to fit in with daily life.so info on cytokines is also helpful in working that out. I think our size and more importantly our weightmust also be an important factor in working out the effective dose for us as individuals . Things have been really good for me today so I'll see what tonight brings another red face and hot feet haha x