Is PMR often misdiagnosed?

I'm sure others will chime in soon but I will tell you that what you are experiencing is most likely a flare. And the only way out of a flare is to up your dose enough. Your doctor started your starter dosages pretty low but I'm glad it worked for you. You don't say how long you've been on pred or how long it's taken you to taper down but it is very important to taper very slowly or your body will respond negativity. And in the end you will pay with lots of pain. Eileen will be on soon to explain to all to you I'm sure. But I think you'll need to up your dose even further.

Holy cow I just read your post again. You are already down to 5 mg in two months. You are definitely not being treated right if that is what your doctor has instructed you to do. I am at 12 mg and I started last September. Eileen please come to her rescue.

There are other conditions that are similar to PMR such as rheumatoid arthritis and there are probably a fair number of misdiagnoses. Are you saying that at 10mg the steroids relieved your symptoms? If so it is quite possible you have PMR. Steroids have no effect on fybromyalgia. It sounds like you have been reducing too fast and the inflammation is no longer under control. It is often suggested that you should go back to the last dose with which you felt comfortable. PMR is a long term illness and most people are on steroids for at least two years and a lot of people much longer. Under 10mg you need to reduce slowly. At around 7mg the adrenal glands have to wake up. This can make you feel tired. Above that amount the steroid dose gives sufficient cortisol for them to take a holiday. 

Since the prednisone relieved your symptoms, it is likely that you do have PMR rather than some other disorder. (Rapid relief of symptoms in response to prednisone is almost diagnostic ofPMR.) The problem appears to be that you have reduced the dose very quickly and continued to reduce after your symptoms returned.

Doctors often act as though the goal, once you are on prednisone for PMR, is "getting off prednisone."  The real goal is relieving your symptoms so you can lead a real life!  Don't get me wrong, there are possible ill-effects of taking prednisone long term, so you do not want to take more than you need.  As Eileen (our resident expert) says, the goal is taking as little prednisone as you can while getting relief.

The challenge is getting the balance right- just enough to control the symptoms. And not reducing so far and so fast that you have a major recurrence.

The typical starting dose is 15 mg, so your doctor started you off at a low level.  Maybe your doctor is just an optimist, but there are a lot of doctors who lean toward avoiding prednisone at all costs.  

Some act like the patient is "addicted" or has some ulterior motive for wanting to take it.  This is ridiculous- if you have PMR, the standard treatment is prednisone and the duration is a lot longer than 5 months. 

I hope your doctor is open to a more conventional course of treatment for you. There is no need to suffer the debilitating pain of PMR unless you cannot tolerate prednisone or the doctor comes up with an alternative disagnosis. 

 I apologize if I am way too blunt- I am constantly outraged at the stories I hear of people suffering tremendously because their doctors are unreasonably wary of prednisone.

You have been reducing your pred dose far too fast - such steps work for patients using pred short-term to manage a flare of whatever, they do not work in tapering from the starting dose for PMR. And while you were exceedingly lucky in responding so well to 10mg where the normal starting dose is 15mg or more that does NOT mean you will be able to manage on a much lower dose than the rest of us long term! It means you haven't got as far to reduce, that's all!

I'm very grateful to everyone else who have saved me a LOAD of typing  and it's all what I would have said.

However well you responded to 10mg - you do still need to try to reduce and find the LOWEST DOSE THAT GIVES YOU THE SAME RESULT AS YOUR STARTING DOSE, which you will use for a much longer term journey with PMR and pred. It looks as if it MAY have been somewhere between 5 and 7.5. If you are lucky - I was fine at 5mg the first time round, but when I stopped taking pred after 2 weeks (on a rheumy's orders) I was worse than at the beginning and despite going back to 15mg and reducing more sensibly it took a long long time to get below 10mg again.

Looking at it logically, at 10mg you were already much nearer that dose than most of us were - and that means small steps are essential from the start to identify the final dose as accurately as possible. You were fine at 7.5 for a longish time - half a mg at a time from there would have been the ideal. It is possible that 7.5mg IS that lowest dose - or 7mg or 5.5mg. Half a mg can make a massive difference as I've posted about a few times! If it is 5.5mg then it would be silly to stay at 7.5mg.

So, if it were me I would go back to 10mg and start over again - you can probably use 10mg for, say, a week to get the symptoms under control and then go back to 7.5mg for a month to be sure you are still OK. Then - half a mg at a time. You may have to go to a GP to get their backing if your rheumy won't agree. You don't say against WHICH doctor's orders. Whichever says don't go back up doesn't have the slightest clue about how PMR works. I had one useless GP in the practice, he was the one I saw regularly because he was always there and I believe continuity of care is important but one of the part time women who had been on maty leave was far superior to him and recognised PMR immediately where even a rheumy was being obtuse. If it means shopping around within a practice then so be it. You need a doctor who accepts you need the amount you need for the moment and that this isn't a problem that is solved in a few weeks - it is chronic illness that lasts between 2 and 6 years for about 75% of patients - and pred is required all that time. 

As for alternatives - if you had raised blood markers then it is unlikely to be fibromyalgia, it isn't inflammatory. The fact that whatever it is responded to pred also means it isn't fibro. The fact it responded to such a low dose of pred suggests it isn't any of the other things that resemble PMR: late onset RA and ankylosing spondylitis would be typical. If you were fine at 7.5mg no reasonable doctor would be worrying - that is the equivalent of what your body would produce in the form of cortisol anyway.

The fact your rheumy is very young probably means she may know the theory but not a lot about the practice. Below 10mg you should not reduce more than 1mg at a time anyway - in tapering top experts have said for years reductions should not be more than 10% of the current dose. I've already explained the rest in PMR - you aren't just "getting off" pred, you are titrating the dose for you personally and your personal version of PMR. An Italian study found that nearly a third of patients still required pred after 6 years - and some of these were patients who had been put on methotrexate to supposedly get them off pred quicker!

And if any of us have said something you need clarified - ask. 

susanjean,

     My experience being on prednisone for three years, if the dose does not remove the symptoms, you need a higher dose. I would suggest that you go to 10 mg. If that gets the results, stay there for awhile then try slowly lowering. If the symptoms return go back to the dose that removed symtoms.