PMR possible diagnosis

The jaw pain tends to appear when you are using your jaw chewing and will often go away when you stop chewing (like all claudication pain, it's there when the body part is being used because the oxygen supply is impaired). I had jaw pain for several months - but that was before I knew much about PMR and GCA! I also had scalp pain for about 3 or 4 weeks but it went away and has never returned. My consultant here thinks I have something intermediate, more than just simple PMR but nothing to worry about it affecting my sight.

GCA can exist without being into the temporal artery (even doctors often don't realise this). GCA can exist in any artery with an elastic vessel wall, including the aorta (the big artery leaving the heart) pulmonary vessels (lungs) and up the neck and into the head. It requires special imaging techniques to show it. You may get scalp pain and then, if it spreads as far as the temporal artery, the blood supply to the optic nerve may be affected and you get visual symptoms of various sorts and headaches. If that ever happens - go to the doctor!

In our experience - for most of us paracetamol does nothing for PMR. Come to that, neither do normal antiinflammatories, they simply aren't strong enough. Pred is the best pain relief for PMR - and it is not really something to be scared about unless it causes you personally nasty side effects. But there are over 80 side-effects, no one has ever had them all and many people never have any or just one or two.

Good luck

Eileen

Anti inflammatory drugs such as Ibuprofen did nothing to relieve my pain during my first undiagnosed year with PMR. If you are confirmed as having PMR then the steroid Prednisolone is the most tried and tested drug treatment available to control your symptoms. Although I hate taking drugs of any description, I took both Paracetamol and Ibuprofen in sheer desperation especially to get me from my bed to the wheelchair for ambulance trips to hospital appointments but it had little effect. I wasn't diagnosed until GCA came on the scene( the undiagnosed and untreated inflammation of PMR had put me at higher risk of this).

As Eileen has said, the jaw pain from GCA is mainly noticeable on chewing rather than your experience of just lasting an hour and disappearing.

Like you, I had raised ESR markers, also CRP, and a raised white cell count.

I hope you get a diagnosis soon as it isn't wise to have untreated inflammation coursing through our bodies.

It would be a good idea to ask for a Vitamin D blood test as well just to check that you aren't deficient as such deficiency can cause other conditions, including pain similar to that of PMR.

Do let us know how you get on.

Interesting about the jaw pain. It was pretty painful but, I woke up with it twice and it went once up and about. I had it again after eating but again it went. That was 6 days ago and its not returned, so I pray its the start of GCA.

My mother and brother had aorta problems which they both dies from - I think though they both had an aneurysm and I know do not have that problem. The whole thing began when I was in a theatre. The seats were too small and I no leg room, so I twisted and my back went. Physio helped and I was almost back to normal. Then I had a flu jab and felt unwell for many weeks. The back pain came back and then the legs and arms became unbearably painful, especially reaching up and on standing from a sitting position.

"I did have a vit D test a while back which showed I was and am deficient." If it showed you were deficient, have you not been prescribed a course of high dose pure Vit D3 (colecaciferol) to bring your levels up to normal? I was tested and found to be low with a reading of 36 (normal is between 75 and 150/200 depending on which area Trust you come under). I took 1,000iu daily of Vit D 3 for 3 months and when tested at the end of the course my levels had increased to 89

That's very sad to hear about both your mother and brother suffering aneurysms - I assume that with a familial history you do have periodic checks from time to time? Those of us who suffer/have suffered from GCA are advised to have chest X-rays every 1-2 years to check for aneurism.

"My GP has referred me back to my haematologist to check out the raised white cells." I think in view of your high ESR and pain, if your GP suspects PMR, rather than just wait for your referral to come through to the haematologist, he should either treat you with a trial course of Prednisolone or, if he isn't sure, should refer you to a rheumatologist - the sooner the better if only to rule out GCA.

My Vit D levels were 27. As I have had a kidney stone, I have to be careful with Vit D3. I am waiting for my son who is researching what to take with it, like Vit K2 to help it into the bones and not the blood.

I am still in much pain, and living on paracetamol, which help only slightly. I am at best when walking or standing.

If I were you I would get your Vit D deficiency treated to protect you from the risk of contracting other illnesses linked to deficiency, and PMR-type pain is one of them, not to mention other 'nasties' such as cancer.

In view of your worries regarding having had a kidney stone, it might help to reassure you if I mention that I have only one kidney and some years ago was diagnosed with Chronic Kidney Disease. Before I was treated with the Vit D3 supplement (Colecalciferol), my GP contacted a renal consultant for confirmation of the safest dose for me, and he recommended 1,000 units of Vit D3 daily for 3 months, first carrying out a blood test to check that my calcium levels were normal (they were) and then suggesting the calcium test was repeated after 2 months of the course. Most people have a much higher dose than this, but this dose worked for me and increased my levels successfully and safely.

My hubby has also had a kidney stone and he is also safely taking pure Vit D3 to protect his bones whilst undergoing hormone therapy. Sometimes the pharmacy tries to fob him off with a Calcium plus Vit D supplement rather than pure Vit D3 but he stresses the reason that he doesn't want the calcium is because of his history of kidney stone.

Sorry to hear you are still being left in so much pain - interesting though now that you have mentioned you are at your best when walking or standing......those of us with PMR find walking and standing are a no-no, particularly pre-treatment and in the early days of treatment!

Extracts from recent publications looking at the problem (2013):

"However, most of the observational studies do not support a significant association between higher nutritional vitamin D store and increased risk of stone formation. Short-term nutritional vitamin D repletion in stone formers with vitamin D deficiency also does not appear to increase urinary calcium excretion."

"Our findings showed that oral intake of calcium and vitamin D after 1 year has no effect on the urinary calcium excretion rate and the formation of kidney calculi in postmenopausal women."

And google this to get a link for a recent study:

webmd study-vitamin-d-supplements-may-not-raise-risk-for-kidney-stones

and:

Kidney stones are of many types and have many causes.

- The most common types in the US are calcium oxalate stones.

- The stone should be analyzed so as to determine the approach to treatment.

- Whatever the stone type, stone formers have a defect in kidney production of a solution stabilizer, normally secreted into the urine. This keeps the commonly supersaturated urine from forming precipitates (which then aggregate into stones).

- There are two basic approaches indicated in most cases.

- One is to drink large amounts of water each day to keep the urine diluted

- The second is to reduce the urine content of components that form precipitates. For example, if the stone is a urate stone, medicines will be prescribed that reduce the body's production of uric acid. Or if the stone is calcium oxalate, large quantities of calcium should be ingested to block absorption of oxalic acid from the intestinal contents, thereby reducing the amount of oxalate that will have to be excreted through the kidneys. While high calcium intake sounds counter-intuitive, there is a solid scientific base for the recommendation, and persuasive clinical trial data showing that it works. Placing patients on low calcium diets will actually double the risk of having a second stone.

- There are several other approaches that might be taken, but the foregoing hit the main points. It's important to remember that the basic defect (absence of a solution stabilizer) persists, so whatever strategy works will have to become permanent.

- [B}Vitamin D, in doses producing desirable serum levels of 25(OH)D (40-60 ng/ml or 100-150 nmol/L), does not adversely affect any of the components of this system[/B]

Eileen