Temporal Arteritis ( GCA)
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I have Tdmporal Arteritis there are three years. I do not have Polymialgia associated with as most part of patients do.
Would like to know the kind of experience you have, Thank you.
I
0 likes, 8 replies
kimberly04963 iellen32
Posted
Guest iellen32
Posted
Ardern iellen32
Posted
I started with jaw pain oct 2 of this year. Then I developed Ocula migaines in one eye only. Within a couple of days I associated that every time a took Tylenol for the pain I lost vision in my left eye. I changed to 222 that was OK for a couple of days. My BP was 160/130 pulse 120 I when to emegency, they did a ct scan and blood work. There was no problem with either i was sent home saw my GP next day. He said it could be TA but the blood work did not show any problems. he left me with a precription for 292, preds, and an anti inflammatory and do not the preds unless instructed to. 4 days later pain was so bad and I had a migraine like head ache for over a day. Started on the preds 50MG. pain gone in about 3 hours. Call my GP told him what had happen he referred me to a Rheumatiod doctor he put me on 60 mg. Saw him a week later he took me to reduced 5 mg per week until I encouter TA pain or until I hit 20 MG and then see him again. I now down to 20mg Starting today my next appiontment with him is Feb 1. I am not to sure what to do for the next month stay at 20MG or reduce 10% every 2 weeks. I have blood work done every 2 weeks ESR was at 15 and CK when for 3 to 58 then to 152 and back to normal all with in a 2 week period. I had a Cat scan 3 MRI one with dye I am not sure of the results. In the past my GP has also gotten back to me with Bad results he wait for office visited with good result
iellen32 Ardern
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You have a load of symptoms, Pred taperings, tests, MRIs, eye migraine, loss of vision on that same eye.... OMG!
Are you able to sleep enough hours? Do you have pain during the night?
The best thing I can say and do for you now is to write your name adding to a list of names I have and tonight I will pray for you, visualising your name and seeing you as perfect as you are!
Yes, perfect, whole, harmonious!
I am sending you a gentle hug, dear Ardern.
Ardern iellen32
Posted
To answer your questions. I have realized that T A is not cookie cutter disease one size does not fit all. I have no trouble sleeping and as far as pain goes after I started the preds within Hours the pain is gone. I do have head ache but that is all they are. I spent a I month sleep deprived on Pain killers after I started the preds within hours the pain was gone. The Doc who is treating me is a friend I have known for 7 years. He says that the only way to be sure that he diagost it correctly was through a biospy which was the first positive one in my area this year. I can't win at the lotory but i got this. I am considr myself lucky so far i am able to reduce my dependeeence on this drug so far. I find that it is gretting harder to get going in the mornings. At first i had the mintal will to push through it but now is seems every day brings new obstaceles my spellings gets worse every day. One think I though was funny that when I found out about the positive results my ophthalmologist need to see me he had not seen some with TA before and did not see anything wrong with my eyes. anyways thanks for the encouragement we don't have any choice but to push ahead and face it head on this certainly is a wake up call to living every day
EileenH Ardern
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iellen32 EileenH
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Thank you, Eileen.
Ardern iellen32
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yesterday was just terrible. I stayed to late maybe 12 sleeped well but long enough. I always get up at 6. Anyways today is going to be better. I am lucky with both my Doctors they seem well aquainted with this disease and both read me the riot act about eye sight once it is gone its not coming back. The weather is above freezing today no snow and I am going for a walk it usally getts me out of the fog. If I am not touch have a merry Christmas without any pain