Coping with Giant Cell Arteritis
Posted , 13 users are following.
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!
Cheers from Auckland, New Zealand.
1 like, 179 replies
mark45745 sandy08116
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Thank you for your inspiring story !
The internet is awash with negative experiences as it is human nature to only be motivated when we have a complaint.
I think your experience throws my mother's experience into sharp relief as she hasn't received any advice from her GP or any assurances (or even a discussion) about side effects nor has she been referred to a rheumatolgist.
sandy08116 mark45745
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I hope your mother starts asking some questions! And all the best to her.
sandy08116 mark45745
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sandy08116
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Ha ha. Forgot the link.
https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Giant-Cell-Arteritis
Michdonn sandy08116
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sandy08116, just followed the link, very good information. Thanks 🙂
sandy08116
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Good thing I went. Had his blood tests script with me and realised what I thought was his artistic doodling of a line of grass was actually a list of tests for the next six months!!! Rheumy Nurse - who obviously copes with his frilly artwork - wrote out the plan ie one test per two months.
sandy08116
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Michdonn sandy08116
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sandy08116 Michdonn
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Yes, I can. Rheumatologist is shared between sister-hospital in the wider district health board, so he wasn't there when I went. His secretary will keep in touch about when I can pick up the prescription. I've got a couple of weeks' supply to go.
Michdonn sandy08116
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That's good, I would hope so. I may not agree with my Rheumy, but if I call normally can pick up my prescription at the drug store in couple of days.
sandy08116
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Winter in Auckland (NZ) is rain, rain, rain! Slightly depressing but I've got a mission - to get together all the photos and videos I've taken of my grandson; of family celebrations, home life and his career in rugby league. My daughter (his mother), his siblings and I have been attending most of his games from the time he started at the age of five! In October, he will be 21 and is in the top team of his club.
A nice distraction from health matters! Though, latest case notes (shared with me) from rheumatologist to GP says: '. . . really, she has been progressing quite well. Her headache has not recurred and she has no shoulder pain. Her energy level has gradually improved. There has been no GI upset. Dry eyes have troubled her but she has always had a tendency to dry gritty eyes'.
So life goes on - and almost to being 'normal again'.
Michdonn sandy08116
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Hi sandy08116, enjoy your being a grandma, put on a raincoat and enjoy the games, with a smile on your face! 🙂
sandy08116 Michdonn
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'morning, Michdonn - I love my six grandchildren (ages range from 8 to 25) to bits and very fortunate to have all living within 10 kms from me. Nice to see them, nice to spoil them and nice to give them back to parents (for re-programming!). A non-conformist at the best of times, age has humbled me to take health more seriously. No more stupid playing in the rain! Instead, I watch from the comfort of the clubhouse and take photos!
I did catch a cold during the year and instead of the three (mandatory) weeks of utter misery and self-pity, it was gone in two days. Wondered if steroid use played a part. 'Steroids (corticosteroids) have been shown to help relieve symptoms in other types of upper respiratory tract infections by reducing the inflammation of the lining of the nose and throat, which means they might also improve the symptoms of the common cold'.
Medical researchers are not fully convinced, though I am.
Keep smiling.
Michdonn sandy08116
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Good for you sandy08116, keep moving and loving those grandchildren. Okay stay out of the rain also, with a smile on your face! 🙂
EileenH sandy08116
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I have had fewer and less unpleasant colds since I've been on pred ...