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
sandy08116
Posted
The NZ Vascular Support Society has a good overview of vascular diseases. It is good to read that it reinforces my insistence to know everything about GCA, what was happening. My doctors agreed and shared their case notes with me. To pinpoint whether something was caused by the disease, or was it side-effects of the drugs, was invaluable.
'Each case of vasculitis is different – Get to know your disease. Educate yourself, the more knowledge you have, the more you will be able to participate in the management of your disease. Be your own advocate - you know your body; don't be afraid to speak up. Vasculitis is rare and not as well known as it should be, be persistent ask questions'.
sandy08116
Posted
Sometimes I deliberately avoid collecting the mail (usually only junk mail) because I fear what is being sent. Especially the official-looking stuff. Got one today. Another speeding ticket? Haven't had one for a while. No. It was my case notes from my rheumatologist. All good news: 'no symptoms of intercurrent PMR. Dry eyes and dry mouth but these have been longstanding. No synovitis, no proximal muscle weakness. Overall progress has been good, will continue dropping the prednisone dose per month and have rebooked an appointment in 3 months'.
Time to celebrate.
Cheers all
Snippett sandy08116
Posted
sandy08116 Snippett
Posted
Hi Snippett - I wouldn't wish GCA on anyone, its wonder drug Prednisone is a nightmare and for the duration kept in mind the encouraging words of the rheumatologist that it is very treatable and manageable. I stuck religiously to the long tapering schedule and - after 13 months - I will have my last dose of pred, omeprazole and aspirin tomorrow. Elated but also scared! But on Thursday, I met a new member at our petanque (boules) club and out of the blue discovered we both had GCA!! She was also treated in hospital in Auckland, same duration and schedule of treatment and came off the drugs last June. No flares. She said, "Sandy - you won't believe how normal you will feel".
She's my inspiration. Life back to normal. It can happen, will happen. It will be for you too.
All the best, Snippett. Keep in touch.
(Incidentally, back to playing competition petanque after two years on the sidelines, just watching. Doing so well, even winning all my games in two bouts of interclub and recently with two friends, won the Auckland Regional Women's Triples Championship (I'm on the left). Made my friends laugh. They think dope tests should be mandatory!!)
sandy08116 Snippett
Posted
Hi Snippett - I wouldn't wish GCA on anyone, its wonder drug Prednisone is a nightmare and for the duration kept in mind the encouraging words of the rheumatologist that it is very treatable and manageable. I stuck religiously to the long tapering schedule and - after 13 months - I will have my last dose of pred, omeprazole and aspirin tomorrow. Elated but also scared! But on Thursday, I met a new member at our petanque (boules) club and out of the blue discovered we both had GCA!! She was also treated in hospital in Auckland, same duration and schedule of treatment and came off the drugs last June. No flares. She said, "Sandy - you won't believe how normal you will feel".
She's my inspiration. Life back to normal. It can happen, will happen. It will be for you too.
All the best, Snippett. Keep in touch.
sandy08116 Snippett
Posted
Hi Snippett - I wouldn't wish GCA on anyone, its wonder drug Prednisone is a nightmare and for the duration kept in mind the encouraging words of the rheumatologist that it is very treatable and manageable. I stuck religiously to the long tapering schedule and - after 13 months - I will have my last dose of pred, omeprazole and aspirin tomorrow. Elated but also scared! But on Thursday, I met a new member at our petanque (boules) club and out of the blue discovered we both had GCA!! She was also treated in hospital in Auckland, same duration and schedule of treatment and came off the drugs last June. No flares. She said, "Sandy - you won't believe how normal you will feel".
She's my inspiration. Life back to normal. It can happen, will happen. It will be for you too.
All the best, Snippett. Keep in touch.
(Incidentally, back to playing competition petanque after two years on the sidelines, just watching. Doing so well, even winning all my games in two bouts of interclub and recently with two friends, won the Auckland Regional Women's Triples Championship (I'm on the left). Made my friends laugh. They think dope tests should be mandatory!!)
Michdonn Snippett
Posted
Snippett, Prednisone, the devil's tic tacs are no cake walk to be sure, but when you can not move, can not walk in a wheelchair, can not put your shirt on and button it or can not get off the toilet and then months later can spend the winter working as a ski instructor, while taking Prednisone. Yes, for all it's side effects I consider it a wonder drug, I don't know how I could have live without Prednisone these past couple of years. I try to stay positive and smile. I believe it helps, try it. Smiling ??
Snippett Michdonn
Posted
Thank you Michdonn, l needed a reality check.. l am grateful for the Prednisone .. but early days and a tad overwhelmed.. lm getting there and will remember to smile !😀 all the best to you!
Michdonn Snippett
Posted
Snippett sandy08116
Posted
Go girl!!..how wonderful to be back playing petanque and winning!!!!
Thank you for your encouraging reply.
I am 73yrs old and like you fit and well enjoying a full life.. my name is Trish..l live in Melbourne. l had hoped to visit N.Z. late June.. Auckland and Wellington to catch up with family and friends..my husband is a N.Z er( he visited in late Feb, for his sisters 90th b.day..l missed out as Dr's still trying figure out what was wrong with me!!!)l have decided to wait until l am more stable, probably Nov..pleasant weather then!
Last 10 days has not been much fun....I came down to Prednisolone 15mg and had a flare up ..scarey!..so back up to 25mg for 10 more days then more slowly down. Methotrexate and Megatol added to the mix!!!
Vision tests have shown optical nerve damage Rt eye and considerable deterioration in my peripheral vision.. could be worse!..hopefully Prednisolone has halted further deterioation..more tests in 3wks.
Still struggle with my brain being foggy..weird!, a tad irritable some days,fatigue,l seem to have lost my bounce.. l sorta feel flat!!, muscle ? weakness.. still haven't managed my usual long walks..shorter distances seem to be the way to go at this time.. is this how it was for you?
Rhuematologist says possibly 2yrs on Prednisolone...grrrr!
I am so glad you are progressing so well, you are my role model!!
Thank you..
How have you been since coming off meds? Do hope all is well for you! Take care..?
Snippett Michdonn
Posted
😊?😀!!!
sandy08116 Snippett
Posted
Hi Trish - My role models say it will take months to feel 100% - such are these drugs we take. So perhaps that's why docs say up to two years. GCA goes quite quickly, the rest is the pred side-effects. Up and down, but nothing major. Today I cleared another area of the jungle - the trouble with living in a sub-tropical rainforest - sawing trees, lugging the rubbish. Every inch of muscle aches. I thought I'd take a couple of panadol but had a coffee and forgot. Feeling better.
I love Melbourne. Most of my rellies and school friends are there. Visit often and (being ex-pat Sri Lankan) it's parties parties parties! They love their food and feed you to death! Sister lives in Tullamarine, bro (dec) lived in Springvale.
In fact, I migrated to Melbourne in 1961 but Cornish hubby-to-be decided to move to Auckland and I followed. No regrets. Love it here.
When you are in Auckland, would love to meet you.
Keep well . . .
EileenH Snippett
Posted
I hate to break this to you - but 2 years on pred is the low end of the scale! Most people with GCA who I know have taken 4 to 5 years to get off pred entirely.
The underlying autoimmune cause of PMR and GCA may last for far more than 2 years although as long as the pred dose is high enough the symptoms won't flare. But try to push the dose too low and if it is still active you will get inflammation and symptoms again. I have no idea what makes some doctors think they are gone in under 2 years - that applies to maybe 20% of patients.
Snippett EileenH
Posted
I am having regular Accupuncture which possibly will assist in getting to underlying cause.. certainly relieves some of the meds side effects..
Snippett sandy08116
Posted
Sandy your garden sounds hard work but beautiful..
Do let me know if you visit Melb..l am only 1/2hr drive from Tullarmarine.. coffee and catch up would be nice.
My Mum's maiden name was Cornish.. Grandparents from Cornwall..
Stay happy and well...