Waiting for a diagnosis of PM or GCA

Hello Maureen

I'm sorry to hear what a horrid time you're having - such pain is so debilitating. Although you say you have been diagnosed with a rheumatoid disorder, you haven't said what treatment you have been given.

The jaw pain, scalp pain and headaches to which you refer are classic symptoms of GCA and should be treated as a medical emergency in order to prevent vision loss. Can you better describe your jaw pain - is it there all the time or just on chewing?

Although I presented with body pain, severe headache, jaw pain on chewing, I didn't have a temporal artery biopsy at diagnosis but it is still very possible to have GCA without it showing up in a biopsy. They only take a very tiny piece of the artery away and it's very possible that the large cells for which they are looking for have escaped that portion. Like you, my blood results also showed aneamia. I also know a lady who had several negative biopsy results - she ws eventually given a trial of steroids and the immediate good response led to the diagnosis of PMR/GCA.

It is common practice where GCA is suspected for the patient to be prescribed a high dose of steroids and if there is a remarkable reduction in the symptoms (about 75%) within hours or a couple of days, then that is generally used as confirmation of the diagnosis.

If you experience any pain in your eyes, around the temporal area, or blurring of your vision, then you should seek emergency advice and treatment. If I were you I would be looking for a second opinion, and fast.

I do wish you well.

I'm also convinced of the GCA. I'm going to call my RA doctor today since I don't have my appt until April 21st - I haven't actually seen her since the biopsy results - She didn't want to treat me until the results came in, so I'm only assuming she'll not treat me with GCA treatment if she's not convinced because I had asked before if she could start treatment before the results. She didn't want to because of the steroid side effects. i had heard that you can have scalp tenderness with fibromyalgia, but never heard of PMR scalp tenderness without the arteries being involved. Thanks for your response!

Sorry I'm late!!! Welcome Maureen although we really would prefer not to have met you - in the nicest possible way. ;-)

MrsO has told you the essentials - and she knows, she's had GCA. I can only tell you the other facts which apparently your doctors aren't aware of - and I'll do so even though I'm late in case they still don't act in some way.

The biopsy is actually only positive in approximately half of cases of GCA. It is a very iffy "gold standard" in that sense. If it is positive it means you have got GCA and the temporal artery is affected. If it is negative is DOES NOT RULE OUT GCA. Because of the way it manifests in the artery, it is common for no signs of the giant cells to be found because it can skip areas: if the sections examined are from one such area it won't be found. It must also be done before treatment with pred is initiated or at most within a couple of days or the cells will start to disappear. The dx should ALWAYS be made on the basis of the clinical signs and symptoms - you say you have an elevated sed rate but some doctors expect it to be exceptionally high in GCA. That is also not necessarily so, 1 in 6 patients has no abnormal blood tests.

I do hope you got a result from your rheumy and she has given you some treatment. I get very annoyed at "I don't want to treat because of the steroid side effects..." In the case of GCA the side-effect can be blindness - and no pred side-effects is as bad as that. If a doctor gives a one week course of 20mg/day pred the side-effects are minimal - whilst that won't cure either PMR or GCA (nothing does yet) if you have either of those 2 illnesses the symptoms will improve dramatically within 36 to 48 hours (in PMR down to about 20% or what they were) and as a confirmation will return to the original level within the same time period. One group in the UK (Bristol) uses that as a diagnostic test: a week on vit C, a week on pred and another week on vit C. In PMR the symptoms improve almost overnight, returning almost overnight on stopping the pred. In inflammatory arthritis the symptoms improve slightly but not dramatically and in other things ther is no effect. A higher dose is preferable for GCA but some effect will be seen even with 20mg.

There is also an ultrasound test for GCA - a trained good vascular technician can do it and a halo is seen around the artery and there are several mentions of it in the medical literature although it is not commonly done.

I have been on pred for nearly 4 years, much of the time at a dose above 10mg/day. I put on weight but other than that I have no serious side effects such as diabetes or osteoporosis (my bone density is exactly the same as it was 3 months into pred). I have a slightly high cholesterol. The side-effects of untreated PMR and especially GCA may be far worse than any of that and I do have a heart condition now which is almost certainly due to the underlying autoimmune disorder that causes PMR - I had had it for 5 years before it was identified and treated with pred.

BTW - I had scalp tenderness for about 3 weeks at one point and also some jaw discomfort when chewing. I didn't know then that they were symptoms of anything as serious as GCA. It is possible to have GCA in your neck and other arteries without the temporal artery being affected - but all most doctors look for is the two ends of the spectrum: PMR alone where the arteries appear not to be involved or GCA where the temporal artery is involved and your sight is at risk. The opinion now is that I am somewhere in the middle - other arteries may well be involved but they aren't accessible to biopsy so they don't look.

Good luck and let us know how you get on!

Eileen

Thank you for your formative and easy to understand reply. My follow-up appointment with the RA to talk about the biopsy results and hopefully a diagnosis still stands at April 21 - there are no earlier ones avail. I do have an appointment with a physician's assistant tomorrow to talk about my flare-ups and pain management. Basically, I have a burning pain up and down my legs starting at my knees, and at my elbows, and the scalp tenderness from just past my hairline to the top of my head on my right side, and that is pretty constant. I have some stiffness in my legs when I get up in the morning and if I'm sitting long. But then I have flare-ups where that burning pain will also be in my shoulders and hip areas, not at the joints, but around those areas, and the pain worsens everywhere. Its not joint pain, but skin pain, so I guess that would be muscle pain? That with the high sed rate and the fact that my 2 aunts had polymyalgia, maybe I'm in the middle too? How would you describe your pain before your diagnosis?

Yes - in some ways I would have said it was skin pain! You know how your skin hurts when you have real flu? Sort of tender to touch, even clothes! I think the burning pain is probably tendonitis and that is recognised as part of PMR in some cases - though, again, you will find doctors who dispute that being part of PMR. "Hands and feet aren't involved..." - if so, what I have wasn't PMR but it responded in 6 hours with 15mg pred! And that is regarded by the Bristol group as confirmation - especially since I was on a 6 week taper, 2 weeks each of 15/10/5 mg and by the evening of the day after my last tablets I was in bed in tears with the pain. The foot and hand pain took a few months to go altogether but it did go. I had hip bursitis by the time I was diagnosed - it had been there but not too bad for the first 5 years but then everything suddenly got far worse, especially the tendonitis bits, various hand joints and hips mainly. Overall though I felt ILL though never had a fever, was SOOOO fatigued, very stiff in the mornings and after sitting and absolutely couldn't raise my arms above shoulder height - textbook PMR. Luckily I had designed my kitchen and, since I am short, everything at all heavy or awkward was in drawers not cupboards. Otherwise I could barely get a cup from a cupboard over the counters! I also had sort of shooting pains, a bit like electric shocks, and sometimes felt as if I had been punched in the solar plexus - followed by a sweating attack. I assumed that was my age but in retrospect it wasn't.

It's a bizarre disease this - and I, as well as a few experts in the field, think there is a sort of continuum of autoimmune disorders and how your personal experience of the symptoms is defines which label you are given, whether it is fibromyalgia, PMR, GCA, CFS or another arthritis. What is certain is that it is very easy to distinguish between fibromyalgia and PMR: pure PMR responds dramatically to a week of 15 or 20mg (max.) pred, fibro DOES NOT.

However - given the lack of emergency accommodation by your rheumy, should you have ANY visual symptoms at all, however fleeting, blurring or double vision especially on waking either in the morning or after a nap in the daytime, patchy vision, or severe headache (though that is not always present, just about 40% of patients with GCA go to the doctor complaining of headache) please either go to your PCP or to the ER (I'm assuming you are in the USA from the terms you use ;-) ) because those are the real danger signs of GCA. At that point it is by any standards a medical emergency. Personally, I'd rather have a week or two of pred unnecessarily than risk my sight - because once it has gone it cannot be got back. If they are unavailable or unhelpful the other option is an oculist/optometrist/optician/ophthalmologist (think that covers all versions of eye doctor!) who can examine the back of your eye and see if the optic nerve is healthy.

One in six patients with PMR goes on to develop full blown GCA, the rate is higher in untreated patients so it isn't uncommon but recognised and treated it isn't a threat. Ignored it is.

Look forward to hearing the next installment!

Eileen

Maureen

If your rheumatologist is failing to recognise that your symptoms could lead to a medical emergency, and cannot bring your appointment forward from 2lst April, then if I were you I would take Eileen's advice and visit an ophthalmologist urgently. My GCA was confirmed by an examination of the back of my eyes with a torch in a darkened room.

I was one of the patients to whom Eileen has referred who went on to develop full blown GCA because PMR had remained undiagnosed (by as many as 4 doctors!), therefore untreated, during the previous year.

I do hope you get some answers soon and some treatment to make you feel better.