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
One of the most annoying side-effects of the disorder/medication was constipation. As a former diverticulitis sufferer (I took doctor's advice and stopped gobbling my food which solved that problem!) I didn't want to tempt fate.
Now, was told to eat lots of fibre and fruit. Bored with meusli, changed to 'industrial-strength' whole oats, grapes, bananas and raw almonds. Very filling too.
Goodbye, constipation!
Michdonn sandy08116
Posted
I know the Vikings got into North Ireland where my father's family in from. My brother in suppose to go back this fall, if he's going up to Tyrone, I will ask him to see if anyone has PMR. He probably will share a pint or two in the village pub!
sandy08116 Michdonn
Posted
I'd say anything for a pint of 'black and tan' - half Kilkenny and half Guinness!
Michdonn sandy08116
Posted
Sandy08116, I would enjoy a pint or two of Guinness in an Irish pub, no Irish pubs here in New Mexico. But on this diet no beer, but my wife is day 76 with out a migraine! I stay on the diet with her. 🙂🙂🙂
sandy08116
Posted
We're on the home run! Lovely feeling. Prednisone decreased and plotted for the next three months. Disorder localised. Didn't spread. Just the gritty and tenderness around the eyes and the moonface to go. I want my wrinkles back. Hopefully a decrease in appetite also to stop the desire to eat everything in sight! After that, deal with the tonne of weight to look nearly human would be nice.
I never experimented, kept rigidly to doctors' advice. Think this helped the process.
Michdonn sandy08116
Posted
sandy08116 Michdonn
Posted
Michdonn sandy08116
Posted
We are all routing for you! 🙂🙂🙂
sandy08116
Posted
From today, for one month, preddie reduced to 8mg. And more reductions per month. Being positive - there won't be any flares. C'mon bod, you can do it! Served me well for 74 years and I have faith in you.
Michdonn sandy08116
Posted
sandy08116 Michdonn
Posted
EileenH sandy08116
Posted
sandy08116 EileenH
Posted
That it was localised in only temporal area was in the Rheumatologist's case notes, Eileen.
sandy08116
Posted
Summary from case notes: 'She is actually very fit and well. She has had no subsequent visual symptoms. No chest pain and no shortness of breath. There are some symptoms of dry eyes, although this on the prednisone. Her taste has really diminished since she has been on high-dose prednisone. Usually she is quite active. She does smoke four cigarettes only per day. Family history is unremarkable for inflammatory arthritis although her father had (latent) diabetes. The systems review is unremarkable.
Examination - Left temporal artery non-thickened and non-tender on exam. Blood pressure 126/70. Heart sounds are dual. No synovitis in the hands, wrists or elbows. No proximal muscle weakness in the upper limbs. No proximal muscle weakness in the lower limbs. No radio-radial delay.
Included in the summary: The problematic issue often relates to the complications with prednisone at this point. She does not have additional risk factors for PCP but we will certainly watch her lymphocyte count'.
EileenH sandy08116
Posted
sandy08116 EileenH
Posted
EileenH sandy08116
Posted
Then he can't know for sure it is limited to just the temporal artery - and that would be pretty unusual.
sandy08116 EileenH
Posted