I had never heard of PMR and had no idea why I woke up one morning with painful joints.
I'm 65 years old, live in the Uk and have ( barring injuries ) led a healthy life. Sure I'm a little overweight and could certainly be more active, but all in all, I don't lead an unhealthy lifestyle. It all started around 3 months ago and with a few weeks of "grin and bare it", I decided enough was enough and went to see my doctor. Instant diagnosis PMR, instant recommendation. Prednisolone. That was error number one. 1 week in and I am in a worse state than the PMR symptoms. So I stop taking the steroids and my life goes down the pan. Back on the steroids and reduced them by 5mg a week for 6 weeks. Not a good experience but at least I am off Prednisolone and WON'T be taking that again.
Now looking to control my inflammation and pain by more natural means.
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Ta1ch1
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Hi. Pred brought on severe cramps in legs, hands, feet etc. Also, it made my mind so foggy that it was impossible to concentrate on anything. One calf cramp lasted 3 days without any respite. When I took the Pred, the cramp went away, stop taking the pred, it returned.
As for checking for R.A., all I can say is the doctor did a "range of motion" and strength test on my shoulders and arms. Diagnosing PMR as the culprit and Pred as the solution. No other alternative was mentioned and I took her at her word.
Others who are experienced with PMR will reply I’m sure, but that sounds like one heck of a reduction speed. You may well have had withdrawal symptoms because of that which made you feel crappy on top. What dose did you start on?
Did you have inflammatory marker blood tests (ESR and CRP) and rheumatoid arthritis done?
The body does settle with Pred but it undoubtedly makes one feel a bit peculiar and often worse (but not the pain) when you first start. Most people trade that with not having the pain finally. It is a good idea to take magnesium supplements when on Pred because it makes you lose it more readily and can cause cramps.
I started on 30mg a day. Took that for 7 days before deciding enough was enough. Then reduced by 5mg ( one tablet ) a week over a 6 week period. Blood tests were taken but no further information regarding results.
Yes, 30mg would make you feel like nothing else, but it does settle as long as you don’t reduce too quickly. 7 days wasn’t long enough. Anyway, if you find yourself back to having to take it, take heart that it will ease and it is effectively suppressing inflammation not only in your muscles but in your arteries as well which can lead to much worse problems later down the line. I started on 60mg for GCA and a year plus later I’m on 6.5mg. I felt absolutely hideous but I knew that it was protecting me from blindness which helped!
No wonder you felt horrible! Proper dose for PMR is typically half of that. The cramps can be controlled with magnesium but the rest does sound like withdrawal symptoms. You might want to go back to the doctor to do some more exploring. If it is indeed PMR it is important to control the inflammation because of the damage it can do. If prednisone is properly managed you won't have nearly the problems with it that you did. There are some people who try to go without but it is very difficult to do. You might consider trying again with a lower starting dose and a much slower taper. You shouldn't get such a strong reaction. Good luck with all of this - it's life changing
I hear ya dawg! I had a few great days where I was "Superwoman" and then when the Pred side effects (and then withdrawal symptoms) kicked in... I was history!
Wow, what a read, I feel like a Charleton compared to that list. I will continue down my homoeopathic route and hope for the best. I would rather have the pain that the side effects any day.
Sorry, but I had to read your post twice, to see if I read correctly. You would rather have the pain???????????? No way. 12 years GCA and only Pred has been my life-saver.I have Addison's Disease, and if I have to stay on Pred, forever, so be it.
Clearly, this will indicate that the side effects, ( in my case ) outstripped the pain of the PMR I suffer. Add to that the fact that I have not managed more than a few hours interrupted sleep per night while on the Pred and you will see my dilemma. Of course, every sufferer's experience will be unique to that person.
Was drinking some bone broth (inspired by post on what vitamins/minerals doctors are taking) when I read this. I about sprayed my monitor when I got to "have not managed more than a few hours interrupted sleep per night...you will see my dilemma." I think not only have we seen that dilemma, but we've also experienced it. Some continue to live it. Quite common! As DL would say, got the t-shirt to prove it.
I wish you luck with the homeopathic route. If you find that PMR gets the better of you or, heaven forbid, the untreated inflammation morphs to Giant Cell Arteritis, come back. This group will be able to help you with suggestions on how to manage your complaints. None of them are new to us, goes with the territory, and are manageable, for the most part.
You were in early days of PMR - if indeed it IS PMR since that really doesn't sound like a comprehensive diagnostic process.
30mg of pred as a starting dose for PMR is far too much. 15-20mg is more usual.
However - should the PMR progress to GCA don't feel tempted to refuse the much higher dose of pred that will be needed for you to avoid the risk of loss of vision. If PMR is untreated not only does it do damage to your body in general because of the unmanaged inflammation but you are at a higher risk of the PMR progressing to GCA.
I had PMR for 5 years before I ever got to have pred to even try. I was in constant pain and very limited as to what I could do. I do hope that yours doesn't last as long - but maybe you will change your mind. You wouldn't be the first to tell us they were "going the homeopathic route" only to discover there isn't one that works.
The pain and immobility were unbearable, knowing everything I do now , mostly from here , I would have been asking for prednisolone at least a year before .
It doesn’t sound as if your doctor’s prescribing protocol allowed Prednisalone to do its magic. Never say never, unchecked inflammation can lead to worse conditions.
It could be that you have something else entirely and I would want. Rheumatologist referral and a whole raft of tests.
In the meantime everything you can do to support your health is a brilliant idea.
I hear wher you are coming from, but as others have said - never say never to Pred.
I appreciate you do not want to take Pred - who does? Who wants to take any medication? But sometimes you have to.
If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Most people go into remission when the underlying PMR goes away, but not always.
There have been posts about natural remedies before, and I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.
However, there are people on here who were virtually bed bound before diagnosis for many months, even years, and Pred has turned their lives around, given them back the ability to enjoy it almost pain free.
I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll never know.
If it doesn't go into remission quickly (unlikely) then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped to possibility of blindness?
As I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but they have given many people their lives back after being virtually bedridden at worst, extreme pain at best pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.
As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!
I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.
On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!
I don't intend to scare, but I do say, think very carefully before you reject Pred entirely.
I hear you DorsetLady and I think if I had the severity of the disease that you have suffered my thoughts would turn towards P. But until and unless they do, I am pressing on with the homoeopathic side and will monitor things very closely. thank you for your "somewhat scary" feedback, knowledge beats ignorance any day.
My GCA blew up over 48 hours with no warning that would have told me. My sight started to go rapidly over about an hour with symptoms that most would have taken a Paracetamol for and gone to bed. It was only because I’d had training as a nurse on how to deal with a patient with a headache that I knew what it was and got to the GP quickly. With hindsight I should have gone to A&E but I only knew what it was called and it was a bad thing but very rare. I have always gone for alternative and natural treatments first, was on a gluten free, dairy free and low inflammatory diet already. My body still was unhappy enough to attack itself.
Ta1ch1 if you have any head or jaw problems or bad headaches go immediately to hospital. Blindness can occur in as little as 30 hours from nothing. Also not taking pred you are leaving yourself more open to getting GCA, PMR’s ugly sister.
Ta1ch1, if your PMR diagnosis is correct, then I truly hope that the inflammation involved doesn’t climb to dramatic heights as, without steroid treatment, at its worst you could become bed bound. That was my experience due to non-diagnosis and, as if it couldn’t get any worse, one year later the symptoms of PMR’s ugly sister, GCA and it’s risk to my vision, joined in the ‘fun’, no doubt because the inflammation of PMR hadn’t been controlled by steroids. Three weeks, four doctors and one rheumatologist later, I was finally diagnosed and given 40mgs of Prednisone. Not a fun medicine but it gave me back my life, not quite the life I knew before but a whole lot better than pre-steroids. I do wish you well in your quest to try another route but please remain especially alert to any problems with your vision and seek immediate emergency advice if unsure.
Please let us know what homeopathic methods you find helpful. Even though most of us take prednisone, many add on supplements, alternative therapies, or other things to try to assist the meds. Cutting carbs and/or gluten, Bowen therapy, Craniosacral therapy, or acupuncture etc. I would be interested in anything that will help.
Just off the phone with the Doc. Agreed to take the pred back up to 10mg daily until I go back for an appointment next Thursday. Will be referred to a rheumatologist for a deeper exploration of my symptoms. Will keep you informed of my progress.
Fingers crossed that 10 mg will be enough to help. Initially folks find it takes at least 6 weeks to lose the build up of inflammation and then you'll be ready to reduce the dose. Typically at 10% at a time, so 1 mg to start. Take a look into Bowen therapy. It's very popular among this crowd. Seems to help folks cope with it all.
Well, at last, I seem to be getting somewhere. ( in a sense )
The problems persist but at least yesterdays trip to the doctor has led to being taken off Prednisolone ( risk of a psychotic episode ) and after Xrays, blood etc I am being referred to a Rheumatics Clinic for specialist support. It would seem that I an one of a small % that cannot tolerate Pred. So it's back to Naproxen and Co-codamol for me. Not a cure obviously but at my age, I guess I have to grin and bare it.
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