Am so lost with this

Thank you Eileen. Could you or anyone explain difference between jaw claudication and TMJ? Appointment with rheumi looming next month and he disputes the diagnoses. Therefore reduction in pred his only priority!

Hmm - difficult and a differntial diagnosis between TMJ and GCA is one that is mentioned! 

The pain may be similar, the cause is presumably different. Jaw claudication is caused by a lack of blood supply to the jaw. TMJ pain is more a mechanical problem I think.

A New Zealand guide says: "Pain while chewing and the presence of jaw claudication strongly indicates giant cell arteritis. Distinguishing between jaw pain from other causes (such as temporomandibular joint dysfunction) and true jaw claudication is important – the pain in jaw claudication is a cramping pain occurring after prolonged chewing or talking."

whereas "The three cardinal symptoms of TMJ disorders are: facial pain, restricted jaw function and joint noise." which I suspect are there whether you are chewing or not. 

But reading the stuff I found - there is nothing that is obvious except TMJ occurs in younger patients. It appears too that it depends who is examining you which conclusion is come too! 

What is fairly basic I suspect is that if the pain disappears very quickly with high pred dosage it is probably GCA, especially if it returns when you reduce the dose far enough. But even that is probably not certain.

Sorry.

Well, my jaw seems to have a lfe of its own and wanders off to the left frequently! Who knows?! This is all so confusing.

Have you been referred to maxfax? Or to be a bit less jargonish: maxillofacial surgery? 

No! That sounds pretty scary!

It's just very fancy dentists who have also done medicine/surgery so they know a lot more about that area of the body. 

Google "British association of oral and maxillofacial surgeons" which will explain it rather better than I can here. I'd trust them on jaw stuff rather more than the average GP and/or rheumy!!! 

It is mind-boggling just how much pain a bad bite due to a tooth in the wrong place can cause and how easy it can be to sort it out - if you know wha tyouare doing. It doesn't mean they do heroic surgery (though they can). They just know more.

Hi Whisper. Almost everyone on the forum who sees a rheumatologist, says the same thing (myself included). They question the diagnosis of pmr and tell you to come off of steroids as quickly as you can! Fibromyalgia is usually mentioned somewhere along the line. As Eileen has said before, Fibro does NOT respond to pred, so if you found relief from pain after starting Pred, it is highly unlikely that your pain is caused by Fibromyalgia. Does anyone know just why rheumis are so against diagnosing pmr?! Take care, Debbie

I think it isn't seen as a "real" arthritis and it doesn't kill or damage joints so it is less importantin their mind. Of course - they are quite right - it is a vasculitis!

To some extent their attitude is quite right - what we call PMR is only a symptom and is common to a whole range of underlying causes. There is pred-responsive PMR and non-pre-responsive sorts. What annoys me is the refusal to hear what you say about response to pred and allowing pred to be used to provide a decent quality of life in the absence of evidence of any of the other causes.

Starting at the end: yes, I have SSS but it is causing atrial fibrillation and not particularly bradycardia so no pacemaker yet. Cardiologist was confident the most likely cause was the autoimmune part of PMR having damaged the sinus node. All currently under control with pills.

As I said above, bladder problems can be due to pred (and what the doctors will usually say) but PMR itself can cause it too. I mentioned it to a research consultant who'd never come across it - but then admitted that now she knew and asked about it loads of patients said yes! 

It could be a urinary tract infection so ask your practice to check - you may NOT get the usual pain because the pred soothes that down to an less noticeable level. If not, the most likely cause is interstitial cystitis which the experts will tell you is difficult to manage (gee, thanks!). There are drugs that can sometimes help. For me by far the best effect was achieved by having a urethral dilatation - but whether that is an option for men I have no idea. Apparently certain foods can trigger it - so a diary might be a pointer there. 

But as someone else said - this being older sucks and it isn't for the faint hearted!

Panamabob,

I to am going regular day and night since I have been on pred. I am only 40 so in my case it is most certainly not due to age and it only started when I was put on pred in march of this year. Also once I feel I need to empty my bladder I can not hang on for long. I used to be able to wait hours if I had to . Not anymore I am sad to say 

Yes, i would definitely attribute frequency to prednisolone as it replaces the adrenals. When first on prednisolone my frequency in that department was extreme! Up all night!

Honestly - it is PMR too! It happened to me before pred. But also it does improve eventually - I can hold on for ages now!!!!!

The frequency started happening to me during my llengthy time undiagnosed therefore untreated, so without a doubt it can start due to the inflammation of PMR and not just because of being on Pred.  Once diagnosed with PMR/GCA, I considered that as the bladder is a muscle and all our large body muscles are affected by PMR, then why shouldn't the bladder be affected too?  Getting to the loo in a hurry pre-diagnosis was not an option due to difficulty in moving so there were a few embarrassing moments, all in the house thank goodness.  The good news is that it did improve during my years on reducing steroids - pelvic floor exercises can help.

I had severe frequency - up six times a night - at the acute stage of PMR, ie before I was put on prednisolone. It got much better on 15 mg but came back, though not so badly, as I lowered the dose. 

I have had similar experience since being on pred. and or PMR although I can't really remember prior to pred.   I was like a camel, even my friends would tease me about never knowing where every washroom was at restaurants, movies etc.  Not any more.  I now go several times throughout the day and once or twice during the night.  Age likely has something to do with it (65 on Monday) but it was a pretty drastic change to be just tha alone..  Actually glad to hear others have similar problems.  Wish it wasn't happening but there is comfort in numbers 

Be well and Happy Thanksgiving to all you Americans out there!!

Thank you for the Thanksgiving greeting here in America!