Coping with Giant Cell Arteritis

Thanks amkoffee. Don't get me wrong - sometimes I get like that too. Though my age-mentor is a 94yr-old friend who plays petanque, swims in the harbour every day in the summer, gives talks in U3A. Puts a lot of whingers to shame! Mantra is put up (correction - live with) with the crap, blame it on the medication. 

For some 'official' document or another I had to provide the name of my doctor. Not having one, I registered at a local medical centre. After a couple of goes, I registered with a very good (woman) doctor. She listens, she understands and she discusses. I am more than just a patient across the desk. The centre charges like a wounded bull, but she's worth it.

Hi Kerry. A consultant at the eye hospital conducted tests and said there was no sign of pressure behind the eyes but recommended a biopsy of a right temporal artery. She also said, sometimes the results are negative, in which case, to make absolutely sure, a biopsy would be done of an artery on the left side. Fortunately, first attempt reinforced the diagnosis of CGA.

Coming off prednisone creates a relapse of GCA each time dosage is reduced. The flairs can be explained in the resurgence of the adrenal gland production of cortisol v prednisone that suppressed it. Controlling the balance is tricky. But it settles. 

A medsafe.govt.nz data sheet on prednisone states 'Long-term use in the elderly should be planned bearing in mind the more serious consequences of the common side-effects of prednisone in old age, especially osteoporosis, diabetes, hypertension, hypokalaemia, susceptibility to infection and thinning of the skin. Close medical supervision is required to avoid life threatening reactions'. 

A good reason to persevere with Fosamax. 

"The flairs can be explained in the resurgence of the adrenal gland production of cortisol v prednisone that suppressed it."

Not until you get to below about 10mg/day. Above that the in-house production of cortisol is suppressed - there is more than enough corticosteroid circulating and the body doesn't care if it is natural or artificial. In some ways it is like your heating thermostat stopping the boiler producing more heat - it doesn't care if it is because the heating system produced the heat or the sun was shining and it was hot outside.

With the caveat, Sandy, that most people, I admit not everyone, with PMR and even GCA can fairly rapidly reduce their dose of prednisone to a level which has minimal effect on bones. It's not like being at a high dose for an extended period of time even if one is on some level of pred for years.  I've been on prednisone for over two years, but only for ten or eleven months was my dose above 5 mg, and other measures I took, such as supplementation and weight-bearing exercise, were not only sufficient to maintain my bone density, but also improved it.  A drug like Fosamax with its own suite of serious side effects should only be taken if necessary, never as a preventative for a condition which doesn't exist.

I have been on pred for 8 years, a lot of the time to start with at well over 10mg. The received wisdom is that I should have been on alendronic acid/Fosamax (AA), I was handed it with my pred prescription right at the start. I took 4 tablets and hated it - so, having done my research, I discussed it with a different GP who agreed with me. Wait for the dexa result and reassess. My dex was fine, no AA. The next dexa 3+ years later gave an, to all intents and purposes, identical result. The last dexa done late last year should a minimal lowering of bone density. There are at least 2 ladies who had GCA, were on GCA doses of pred for 5 years - their bone density remained perfect. Neither of them took calcium and vit D, never mind AA. 

I have no cavil with it being used short-term where necessary - but not "just in case" and for more than a few years. The FDA have said not more than 5 years, more recent figures are not more than 2 years. And that is also what the experts are finding in more recent research. For 2 years it allows denser bone to be built, but later the bone formed is showing cracks in the structure. Which put you at risk of the atypical fractures that are a feature of bisphosphonates. And don't believe the assertions it is very very rare - on another PMR/GCA forum there are 2 ladies with bilateral atypical femoral fractures, one isn't healing even post-surgery. There are also several with jaw/dental problems. That is in a community of perhaps a couple of thousand at most over the last 4 years. That isn't "very very rare".

I not saying never, they do have their place. Not everyone loses bone density on steroids, about half the USA population develop osteoporosis anyway - and one figure I saw for steroid use was similar. Unless you do a dexascan before/at the same time  initiating long term steroid use you can't know which is which. So - use wisely. Dexascan, if it is OK intiate the sort of program Anhaga uses, not hand over a pill that may not be necessary. And the walking for the bone density also contributes to managing the PMR/GCA better.