I have been diagnosed with PMR for a little over 6 months. I had never heard of PMR and was amazed when the GP said that I had this. I thought I had overdone the gardening! She wanted to start me immediately on steroids but I declined these because of the side effects. I take 400 mg Ibuprofen twice daily. I have acupuncture and chinese herbs and will shortly be trying a treatment called Zero Balancing. I follow a vegan diet although I do take fish oil supplements since the PMR. I am 63 and work full time as a PA in a busy law practice. Some days are worse than others - on a bad day the steroids are tempting but I am determine not to take them unless I get symptoms of GCA. There is no doubt it has affected my life - night times are bad for me and I am very restless trying to find a sleeping position that doesn't hurt but I can still run my house and do a full time job so I am lucky.
PMR without steroids: I have been diagnosed with... - PMRGCAuk
PMR without steroids
You are indeed very lucky. Like you I had not heard of PMR and I too did not want to take steroids because of the side effects...but after trying to struggle on without them I had to give in...I could not get out of bed or do anything for myself and even with help I was crying with pain at every movement. Steroids have not provided a pain free life but have enabled me to function.
I am always slightly envious of the few who say they manage their PMR without steroids. Thanks for sharing your story...I wish you well.
Thank you so much for your good wishes.
I don't want to play down my symptoms. I too cried with pain and had to be helped out of bed and up the stairs - got stuck on the loo more than once! Suffered the lethargy and fevers and loss of appetite . Lost half a stone so every cloud... ( I have seen sprightlier 90 year olds - but I gritted my teeth and worked through the pain - I still struggle to get dressed with zips and tights etc but have worked out ways around this. At the moment I am determined not to let this get the better of me - I think positively, meditate and will this disease out of my body and try to keep a sense of humour and I can honestly say that I do see an improvement - my legs are stiff now and again - at the moment my shoulders and arms are its favourite playground. I hope this doesn't sound smug - I really do know how people suffer with this but steroids are just not an option I can allow myself to consider. The body can heal itself if we give it a chance - this disease WILL go away and I refuse to give in to it!
Take good care of yourself. X
I am very fortunate that my symptoms have been manageable without prednisone. I did a lot of research and added udo's oil, a morning drink of water with apple cider vinegar, and turmeric drink to my diet I still allow myself 1 cup of coffee, but no wine, wheat or sugar ( small cheats of course..)
I exercise every day, go for massage and tomorrow I go see an acupunturist.
I really feel for all those with so many more symptoms than me ( I am very stiff and have very sore upper arms 0 which make rolling over in bed difficult). I have 1 sore spot on my outer left thigh, and my rt knee is achy. that's it.
It is very scary - no matter which path one takes, there seem to be risks and challenges.
all the best, Pam
I had PMR for 5 years and had to manage it without pred as noone was prepared to diagnose anything - my blood tests were normal and I was said to be too young at 51. Frankly it was awful - I never had a day free from pain and it required a massive lifestyle change and not for the better. I couldn't go anywhere unless I could use the car and park nearby. That isn't easy in the UK. The first few months were not too bad but as it progressed I couldn't have worked in a "proper" job - I'm a freelance translator, my office was a few feet from my bed and I didn't have to get washed and dressed on the days I almost couldn't.
Then it hit like the proverbial ton of bricks and for 6 months I was in agony with bursitis and since I had been stopped from driving for another reason (totally unjustified medical suspicions) I was housebound. Public transport wasn't any help - I needed 3 days to recover from any attempt at an expedition.
I have now been on pred for over 5 years and am finally heading for getting off pred I hope.
Taking pred may sound awful and it can be unpleasant in many ways. However, I have developed atrial fibrillation and the cardiologist is confident it was the autoimmune disorder and the inflammation that caused it originally. It started about the same time as the PMR although I didn't recognise it.
Leaving your body in a permanent state of inflammation is also bad, it makes you even more likely to develop vascular damage and some types of cancer amongst other things. Some experts feel it predisposes you to developing GCA, although that is disputed.
But it certainly isn't a case of pred = bad, no pred = good.
I don't think any of us wanted to take steroids, but for most of us it wasn't an option not to. Being totally unable to function without them - I would have been bedridden and that was never in my plan - and like most, I had a family, job and house to run. Financial considerations apart, being so incapacitated would, I think, have played merry hell with my mental health which is never a good idea.
I stayed in my job supported by the best managers and colleagues I had ever had and didn't retire until I was 66, but by then I knew I had come to the end of my resources and was thankful to step down.
I had gone undiagnosed for more than 2 years as I had a gradual onset rather than an acute one and this alone has caused me many problems. I am unable to tweak my diet as I also have a hiatus hernia (which I'm sure I would have happened anyway) so steroids it was. For me it was a no-brainer.
I was also diagnosed with GCA some 5 years later and was thankful that I was already taking steroids. I was also diagnosed with late-onset asthma at about the same time which again is controlled by steroids.
Some of us really have no choice.
One the best quotes taken from one of the 3 main forums.that i have on my fridge door for when i have doubts about taking pred.: No good getting rid of future issues if you cant Walk, Move, Live Now. have just come in from pottering in my small garden enjoying the Sun. with the help of pred. Best wishes to one & all
Couldn't agree more. I would have done just about anything to avoid steroids, but the pain was just too great to deal with. 5 months on and I am now down from 15mg to 9mg and most importantly of all, able to exercise again. I am able to gently jog 3 miles 3 times a week and cycle 8 miles twice a week, plus maintain my very productive vegetable garden and all that that requires. Of course not pain free, but manageable. None of this would have been remotely possible 4 months ago prior to pred.
I would love not to have had to take pred, but each day I really thank God for the wonder drug. I can now swim, drive the car, garden, go shopping, get out of the house and even dress myself. I wake up in the morning and can move my arms and legs without the excruciating pain. I even had trouble scratching my nose and opted for the itching. I can live again rather than being in a wheelchair in a care home which is the way I was going.
Steroids were my worst nightmare as a teenager, when I watched my mother's side effects, such as skin which tore easily in minor injuries and did not heal for ages. So when I was diagnosed the last thing I wanted was to go on pred. But I could barely walk, dress myself, and was in extreme pain. So I agreed to pred, and it restored my ability to move and function relatively normally. i still have some pain, but it is not enough to prevent my walking, swimming, cycling, all in moderation. I have been lucky in being able to vary my diet and lose extra weight, which makes moving around much easier.
So good luck on the Ibuprofen, but do seriously consider pred despite its drawbacks, if the Ibuprofen ceases to do the business for you.
lilythecat
To use your words: "I think positively, meditate and will this disease out of my body"
for some 4 months of my life, and all whilst bed bound and travelling to the many useless rheumatology appointments by ambulance and wheelchair. I also took Ibuprofen and paracetamol in the hope that it would help me. I lay there setting myself targets, firstly Easter and then my birthday, that whatever was afflicting me would disappear from whence it came, so in spite of non-diagnosis, my positivity remained, and I had endless hours to meditate.
Perhaps that positivity helped, who knows? Because, towards the end of that year I slowly and spontaneously recovered. Sadly that was short-lived and another all-consuming illness arrived with many different and severe symptoms including nausea and vomiting, and yet more almost intolerable pain.
In the midst of all this I received a phone call from my surgery informing me that I now had Chronic Kidney Disease which I must admit panicked me at the time due to the fact that I only had one kidney with which I had lived quite happily since having the other removed over 50 years earlier. The big question in my head at the time was whether the Ibuprofen taken during previous months was to blame, even though I tried to stick to a very low dose over 7 months.
Some 3 weeks later, my wonderful pharmacist suggested GCA and PMR, later confirmed by a fourth GP. Steroids worked their magic and although, being very pill-phobic, I really didn't want to take them and asked if I could have a smaller dose please! The reply was that if I didn't go home and take the 8 pills immediately and each following day, my eyesight was at risk, added to which the returning body pain was once again threatening to see me bed bound.
So, if you have not been too bored and given up reading this far, lilythecat, (I do apologise for the length), you will hopefully understand and sympathise with the fact that for many of us steroids have proved a lifeline and no-brainer. The possibility also remains that the long-term undiagnosed, and therefore untreated, inflammation coursing through my body for so many months was the reason that GCA was let free to arrive on the scene. As you say yes, "this disease WILL go away" but at what cost to our bodies without steroids for those of us who are unlucky to succumb in its severest forms" . I do hope that you will remain one of the lucky ones, and wish you well.
Hi, Celtic. Thanks so much for your post! It’s the first I’ve seen by someone with both CKD and PMR/GCA. I’ve had CKD for 2.5 years now. In just the last month, I’ve had a sequence of symptoms that strongly suggests PMR (sudden onset of pain first in one shoulder then the next day, the other; hip pain a week later; flu-like symptoms and night sweats a week later) and possibly GCA (the temporal arteries on both sides of my face hurt when I palpate them - just developed in the last week; also, soreness in my teeth / jaw, perhaps a precursor to jaw claudication ). One big question I’ve had is whether there are any problems taking prednisone when you have CKD. I know prednisone is actually used for one form of kidney disease (IGA nephropathy), but I have another form of CKD (kidney scarring from urine reflux) and I wasn’t sure whether prednisone was okay for all forms of the disease - particularly if it’s to be used longterm. Also, I wasn’t sure about what prednisone doses were safe for CKD - particularly thinking about the higher doses used for GCA. Thanks for any help you can provide!
Hi Chris, I was so surprised to receive a reply to a message I posted more than 3 years ago! It's good to hear from you, though not so good to hear that you have a possible diagnosis of PMR/GCA hanging over your head, whilst already coping with CKD - may I ask what stage of CKD?
The symptoms you describe do sound very akin to those of PMR/GCA. In view of the temporal artery involvement, I assume that an urgent temporal artery biopsy or scan is being arranged. If not, then this should be done immediately. If GCA affecting the temporal artery is suspected, you should not wait for the tests but should be started on high dose steroids immediately to protect your eyesight. Jaw pain was one of my symptoms, and in GCA the discomfort is usually felt on chewing.
Please don't feel concerned about taking Prednisolone/Prednisone with CKD - it is vital to protect your eyesight. I started off on a dose of 40mg and luckily my eyesight was preserved. As you rightly say, steroids are sometimes prescribed for certain kidney issues. The drugs you must stay away from are the NSAIDS (non-steroidal anti-inflammatories - it is highly likely that the anti-inflammatory, Ibuprofen, was the cause of my CKD. Als, untreated inflammation coursing through your body can also harm your organs, so the sooner you are diagnosed and treated, the better.
I do hope this helps to reassure you and wish you well - do come back and let us know how you get on.
How good it is to find somebody who is tackling this horrible illness in the same way as me. I too decided not to take steroids, having several friends who do, and especially after reading the posts on this forum! It seems to me that the problems of the illness are increased by the effects of the treatment! I am having acupuncture fortnightly, would go more often if I could afford it, and taking supplements recommended by a website thehealthierlife.co.uk , I take ibuprofen (carefully as i have taken it for a spinal problem for years and got acid reflux, but have got over that!) And recently tried devils claw. Occasionally I miss out on the ibuprofen, with awful results. To encourage you, I have had it for 13 months now and recently found walking a lot easier, I have just come back from a 3 day camping trip so am very pleased with my progress. Reading some of the above replies we have to wonder if we are being brave or foolish, but I decided I would rather do it the same way as you until something worse happens, because if it is an auto immune problem our bodies can be encouraged to beat it.
Love and best wishes, cherry
I think it is totally wrong to assume the problems if the illness are increased by the effects of the treatment. For many of us we would have been house bound at best, possibly wheelchair bound for a long time. I have had PMR for 10 years - and for that first 5 I gave it plenty of chance to go away on its own. And an autoimmune problem is not quite the same as an immunity problem - no one has come up with ways to encourage the immune system NOT to do what it sees as its job which is the fundamental problem.
And as for ibuprofen: one lady with PMR was told to take ibubrufen for the pain by her GP. Three days later she was in A&E with a coffee-grounds gastric bleed. Caused by the ibuprofen - which hadn't touched the PMR pain anyway.
For the people who can put half, or possibly more, of their life on hold indefinitely maybe it is fair enough to try without steroids. Doctors still tell us it will be gone in a couple of years - that is the case for about a quarter of patients. For the rest of us it is more like 4-6 years and for the rest much much longer. But it is not a good option to rely on NSAIDs or paracetamol either - the latter is now being realised to cause far more problems, especially for the liver, than at first thought.
Were you following a vegan diet when you came down with PMR? I have thought about converting to a vegan diet and tried a couple of times. Never feel satisfied with only eating vegetables and fruit.
Thank you for you post lilythecat as it is seems difficult to find information about people who are not taking steroid treatment for this condition. I've just been diagnosed with polymyalgia rheumatica after an increase in symptoms over 4 months. I have now taken time off work to recover and feel much better, being able to organise my own activity level and manage the symptoms. Having been quite active in a job which was mainly gardening plus enjoying hill walking and yoga, it is such an eye opener to experience such pain, discomfort and disability. I am not taking oral steroids but the doctor has just suggested 'an occasional intramuscular steroid injection' which sounds it may be a compromise, so I am looking for more information about this approach. Everyone is different in the way we deal with our health but we are all wanting to get better, I think, in the way which suits us best! These things are life changing really, the effect it has on everyone involved as we try to adapt.
I am like you, lilythecat, in that I've had PMR for a year but haven't taken Prednisone for more than 2 days at a time. (I've done that 3 times to "knock it down" which seems to help.) Instead I manage the pains with NSAIDs, trying variations so it doesn't lose it's effectiveness.
Although I've had extreme pain at times and then take Advil, I wonder if it hasn't been completely debilitating for me since I've led an extremely healthy lifestyle. I ate junk years ago but eating healthy became necessary when my daughter had Ulcerative Colitis and I didn't want her on drugs or to lose part of her colon. She is now 19 (diagnosed at 6 yrs old), then 9 yrs of remission, then ate junk at 16 yrs old, but now a believer and symptom free today.
Basically I've noticed any sugar or alcohol causes more pain for me, so my theory is that people are choosing Prednisone because they don't know about the diet connection and that there is an alternative. So many people on the FaceBook group for PMR talk about eating desserts, which shocks me!
So my question is if people with PMR ate very healthy (no gluten/wheat, very little carbs, extra veggies, wild salmon, almond milk, organic, free-range etc.) maybe they would not need Prednisone. I realize after talking to many folks that changing diet does not seem to be a consideration, but in my opinion it's way better than Prednisone. Plus you feel and look great.
Hi lilythecat - like you, I am trying to cope with my pmr symptoms without resorting to steroids. My GP had initially offered to start me on 15mg per day, but understood my concerns associated with my advanced ovarian cancer. I am using diet and regular gentle physical exercise, and am managing the pain and stiffness at night and on waking by using TENS for an hour before rising from bed. I note that you added your message 9 years ago, so I am hoping that by now your pmr symptoms are over and without ever needing steroids. I am only 10 months from diagnosis, so I am keeping a positive outlook progress-wise.
I was also taking ibuprofen in place of prednisone but my doctor said it’s not ok to take more than twice a week so be careful taking it. I also take plaquenil once a day but I couldn’t tell you if it works or not. I still have pain but I suppose it could be worse if I wasn’t taking anything. I take two Tylenol arthritis before bed which is not anti inflammatory but takes the edge off the pain. Just wanted to reply to your post as I’m concerned you’re taking too much ibuprofen. I wanted to do the same but was warned not to.
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