I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA by locum at ([rivate) med centre. (Thank goodness I kicked and screamed or else I would have been happily chomping on statins and slowly going blind!) Fortunately, no eye damage and disorder localised to temporal area. Over time, headaches, auras, jaw claudication went. The paper-thin skin remains. Just one little bump - even a handshake - produces ruptured blood vessels, but more of a talking point than a worry. So do the dry, gritty eyes. Artificial tears clears that problem. Even tastebuds returning to normal which is the best news for a devout foodie and food photographer!
Now remains tapering off prednisone and other medications: Omeprazole to reduce acid in the stomach, low dosage aspirin as a blood thinner and Fosamax (once weekly) to maintain bone density. I was told to eat lots of fibre, eat fruit, drink milk. Any side-effect issues were not a problem and could be dealt with, said the doctors. The tonne of weight I've put on? The moon face? Just for the duration. Don't let it bother you. Blame everything on Prednisone. Of course all this was a challenge to tolerance: I hadn't seen a doctor in 20 or more years (thought they were there to kill you), never had any drugs other than the occasional paracetemol, fit and healthy, (I will be 75 in a couple of months' and play competitive petanque three times a week) and suddenly I was drowning in them! But I knew it was par for the course. Grin and bear it, it will all go away in time.
Both my GP and hospital rheumatologist are thrilled with my progress; they respect my desire to be kept informed and understand what is happening; case notes are shared between the three of us, they say attitude helps enormously.
And I have a mountain of respect for them - and our universal health system!
I'm am 20 years younger then you and feel 90. I wish I had your health. Because in the last year I've gone from feeling like I was 55 to feeling like I was 90. I am so glad that you have enjoyed such good health. I hope that you're able to taper with no problems and get through this PMR journey quickly.
Sounds like you are doing very well. Been 4 years for me and bone density only down a little--fine for my age which is 75 also. I made a decision not to take Fosamax. I only took the Omeprazole when I was on Methotrexate--what a nightmare, will never do that again. You are very lucky to have your biopsy be positive--for many it is negative by the time they get it done and then some doctors do not accept that you have GCA. Just remember that you know when your head, your jaw, etc. flair . One way I know when I am in a near flair is the top of my scalp is tender and my jaw begins to hurt--. Just lately I had a sudden hearing loss with Pulsatile tinnitus for the day after. It was definately some sort of arteritis and we are watching me as I have tapered down to 6 mg.Pred. Last year very comfortable at 3 mg Prednisone--tried to go down and had a flair. I think we are all very different and mostly need to listen to our bodies and pray we have a doctor who really listens to us. There may be some connection of GCA with the Zoster virus. You may want to check that out.
Good luck, sandy08116, I do wish that we all had a medical team that would work with us. I am happy for you and wish you the best. Please advise us of your progress. 😊
You sound 'upbeat' and I am thinking with the thorough medical attention you ended up getting I should have stayed in Auckland myself and maybe not migrated to OZ 35 years ago !!
Anyway curious to know where you are at in your tapering - you sound like you have done it all quite quickly and relatively successfully. I also have (unconfirmed by biopsy) GCA (initially PMR) and have so far tapered down from 60mg to 40mg - resulting in feeling MUCH more relaxed and not so 'racey and ragged' as I had come to call it. I am encouraged somewhat by your comments despite my chubby face and yes that thin skin on the top of my hands as well as first signs of mild osteopenia - luckily not much else so far.
I am 65 so hoping I will have a chance to resume a more normal life one day without needing to 'fixate' on this sometimes irritatingly absorbing disease.
One point of concern. Fosamax should not be prescribed to "maintain" bone density. It should, like all the osteoporosis meds, be treated as a medication of last resort if you have started out with good bone desnity, or even osteopenia, and have been unable to maintain or improve your bone density through careful diet, supplements and appropriate exercise. Several of us on this and the Osteoporosis forums have been able to maintain and improve our bone density despite being on prednisone. I do know that the initial high dose of pred for GCA is a worry, but I am sure you must have been able to reduce to a moderate to low dose after a year?
Did you receive a DXA scan before starting fosamax?
Thank you so much for your comment. I also take supplements. Big question about taking Calsium now. Have had a Dexa scan every year. Again, it may be that all of our bodies are so different, but I am doing well. My doctor recommened almost daily weaight bearing exercise for keeping bone strong--said walking is one of the best to do. (Not sure if this was just for me and my weight!)
Apparently walking is one of the best exercises. I have also taken up Nordic walking, the walking with the two poles, as that is good for increasing upper body strength and keeping one's spine upright. It's also supposed to increase calorie burning by up to 30% if that's of interest to you! A weighted walking vest can also be a useful additon to the wardrobe, especially the kind where you can gradually increase weight carried from just a few ounces to several pounds by inserting small weights from time to time.
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'.
Hi Rimmy - I'm sure Oz care is just as good. Makes us feel quite smug knowing we've got excellent national health care if we need it.
Monitoring by rheumatologist done every two months. He plots prednisone reduction. It will take 18 months. GP is in the loop as well. Currently on 5mg prednisone per day and will drop further in a few days.
Oh the moon face! Was warned about it and it happened. We laugh about it. Upside is no more wrinkles! Yes, it's been a challenging time and I would love to wake up to feeling 'normal' again. Getting there, though. Keep well - and smiling.
Wish you did too, Dan. It must be a nightmare, especially with the uncertainty of the alternative to Obamacare. Of course we pay a universal tax that includes hospital health care so, in effect, cannot claim it is free, but we've got peace of mind - it's for every person, not asset-tested. In all the hospital visits, all tests, consultations, the total cost to me was less than $NZ 20 - three tickets for car parking!
I gave up medical insurance when premiums rose and after friends said I was mad to pay for something we get for free.
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.
Walking is good but mention the words 'do it everyday' and it becomes a chore. Instead, I play petanque (three times weekly) which is a mild and sustained exercise. And there's the physical skill and camaraderei - the support of friends. Hurling three 710gram metal boules per end can be considered weight-bearing exercise.
I told the doctor I couldn't stop eating (weak excuse for increase in weight) but he said this was a side-effect of predisone, it will go. I like his attitude!