I am in the early stages of dealing with this situation. I have had symptoms building gradually for around two months.
My doctor did some blood tests which came back clear. At that point he suggested physio for my shoulder, back and hip pain. When I self-referred online, I got a call back about 10 minutes later telling me I should go to A & E immediately to be checked for Cauda Equina Syndrome. I got the all clear from that and was told my blood tests revealed nothing abnormal (although I don't know which tests were done).
On Monday at work, the pain was unbearable and I called the doctor back and went to see him that morning.
He is going with PMR at the moment as he can't think what else it might be. I reported not getting significant relief from the steroids after 4 days and still haven't after 6 but he said to carry on for a month.
My question is - at what point should this be escalated to a rheumatologist or at least different options be explored?
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Give it a couple of weeks to see if the Prednisolone improves your symptoms. It is the key diagnostic tool for PMR. You can ask for a referral to a Rheumatologist now, it is likely to take time to see one. Have a look at FAQs on here to see if your experience fits.
What dose of steroids are you taking? It may be too low a dose or it may be something similar to PMR such as fibromyalgia or lack of vitamin D neither of which would react to steroids and also it could be several other things too.
This will give you some idea of other conditions which present with PMR symptoms. The PMR we talk about on this forum is the ailment which is left after the other possibilities have been ruled out. For the most part these are ruled out through the tests run when being diagnosed.
The standard dose of pred, which is used as the final step in diagnosis, is generally 15-20 mg, sometimes 25 mg. Higher is not usual as other diseases respond to higher doses and PMR is relatively unique in responding well, usually in a few days, to a low/medium dose.
You can also get lots more information from browsing through our FAQ post, which you should find pinned above, or to the right side of this post.
I was started at 15 but it didn't even touch the sides so went to 25 which had the desired effect within 2 days. Been reducing steadily, now down to 17 and all ok - so far.
It sounds like you’ve taken the usual diagnostic path in that others things are ruled out so PMR is left, even with normal blood tests. You need to give it a couple more weeks and if you are having to keep going with normal life it may me more difficult to get things under control. You may also need higher doses too. What you do have to bear in mind is that the Pred is not getting rid of the problem, it is just helping to ‘mop up’ the inflammation production from the autoimmune activity which in itself can cause deep fatigue, especially in the early months. However, it is the only current medication that really helps. Some medications are used as back up (steroid Sparers) and they have their own issues and don’t work for everybody. PMR is not a knock it on the head with a treatment condition but a rheumatologist would advise on the steroid sparers to get the Pred dose down. As I’ve said any any approach has its issues that need to be navigated.
The Pred can mess with sleep and make ones muscles feel weak and prone to injury so looking after yourself needs to become a bit of an obsession. Be very careful to eat a very low carbohydrate diet so that the pounds don’t pile on and you end up with diabetes as well. Some people also find carbohydrates such as potato, pasta, rice, flours, sugar inflame their condition too. It is important to take extra protein, cut salt (stops the fluid retention), good sources of magnesium, potassium, calcium and vitamin D. You need a vitamin D test to make sure you are not low because that will make you feel achey and tired plus it is very important to help stop Pred thinning the bones.
I would stress that you try get all the help you can with the kiddies and life however small that help is. Also, from experience just think about plan B just in case normal working becomes impossible. Better ready than panic if that is necessary or running yourself into a worse state because you have told yourself you don’t have options. It is a common response. Bodies have a habit of taking over if it’s owner doesn’t listen.
As others have said you need to give the steroids time to work, but the dose may not be quite enough - although 15mg is a very common starting figure, it is not enough for everyone.
As you are still working and have 3 young children that’s not going to help the illness either, as SnazzyD has said, the steroids are not a cure, they are only addressing part of the problem - the inflammation caused by the illness, but not the illness itself. For that you need rest and a bit of TLC, both of which are, I imagine, almost impossible. Any chance of time off work (if not already) and help with the children, albeit temporarily until a definite diagnosis is made.
It might be wise to request referral to Rheumy, but with current status of NHS that may not happen very quickly, unless you can pay to go privately.
It is not that unusual for your blood tests to be within normal range (CRP & ESR), and that you are on the younger end of the spectrum for PMR, but it might also be sensible to be looking for an alternative diagnosis.
Please keep in touch, and let us know how things progress.
What dose of pred are you on? It will only work if it is enough - and the lower the dose you start on the longer it takes to get any effect. And everyone is different - I got a noticeable miracle in 6 hours on 15mg - others take a few weeks and have to increase the dose to get it.
Then you can make a decision as to whether a rheumy is needed - even though some of them think you shouldn't be treated until they have seen you. However, with waits of months in most place and occasionally years, that isn't very practical.
I had the same symptoms of PMR six years ago and it turned out to be a reaction to Simvistatin (taken for high cholesterol). I quit taking statins and the symptoms went away immediately. Five years later, however, I woke up with PMR.
From the article HeronNS supplied (above):
”Drug-induced myalgias or myositis – Statins can be associated with a variety of myopathic syndromes, including statin-related myopathy and myalgias. Explicit myopathy causes weakness and elevations of the serum CK levels, which are not features of PMR. Statin-related myalgias can usually be distinguished from PMR by the absence of prominent morning stiffness and by the lack of proximally and symmetrically distributed symptoms. (See "Statin muscle-related adverse events".)”
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