Mayo Clinic Connect
Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.
Liked by captainkenny
I have had it for about 5 years . It went into remission and came back about two years ago.
I’m on 7 mg of predizone daily. Feel so sorry for myself by trying to muddle through. It is good to talk to others who have this strange and odd disease .
Initially I was on 40 mg of predizone and tapered down. Can t seem to get any lower than 7 this time.
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I HAD TEMPORARY BLINDNESS IN ONE EYE AND JAW PAIN BUT AFTER 2 days in hosp. I WAS TOLD NOT GCA. TWO MONTHS LATER after a biopsy in another hosp. Told I have GCA. Started 60 mg. Of prednasone and also methotrexate . One and one half years later down to 3 mg. Then my ESR and c reactive protein tests started going up so Now 6 months later, I am still on 5mg prednisone. I HAVE NEVER HAD much pain, but worry about my vision. It is a struggle. Good to talk to others. Feel not so alone.
Yes so good to talk to people who have this . This crp is what keeps going up with me also.
So glad your blindness was only temporary.
@654321 – I was seen at Mayo for 1 1/2 year for my GCA and they never did a CRP test. I did have a SED Rate every 3 months.
When first diagnosed they didn t do crp but do now along with the sed rate. Seems like one goes up the other down.
@654321 – I am happy they never did the CRP or I would have had to worry about both of the tests. I call GCA my journey. I am now off of Prednisone and have only lost 2 pounds. I was hoping the 12 lbs. would just go away but no such luck. I found that once I got to 7 mg. I had to go down 1/2 mg every 2 weeks or they advised every month if I needed to go slower. If anyone has any questions, I would be happy to respond. They also advised me to have a chest x-ray once a year to check for an aortic aneurysm.
@654321 – Just hang in there and hopefully you will be able to get off of the Prednisone sometime in the future. It is a frustrating disease.
Thank you so much for your support.
@654321 – I know how important it is to be able to talk to someone that has been through what you are going through. Sometimes we feel so alone and family and friends don’t understand what we are going through. Just remember to taper slowly even if you have to do 1/2 mg per month.
Liked by Kanaaz Pereira, Connect Moderator
@elderdiana – My biggest fear was that I would go blind. My father went blind when I was about 9. We never knew why he went blind but we are now thinking he had GCA. They knew about GCA in the 50’s but I don’t remember my parents going to the doctor very often.
Thank you for sharing this very valuable information with me, tinkerbell. I have had this for about two months now and actually thought it was related to my sinuses and I was going to a sinus specialist which took one whole month to get in to see him. Yesterday morning I saw him and began with mentioning the pain in the left temple and the left eye. He really honed in and listened to me closely….after doing a brief examination of my nose and several other questions which I answered pertaining to my sister having RA, he said I don't believe the temple situation is with your sinuses….it could be Temperol Arteritis. He said he would write an order for a CT Scan with contrast die of my head and the necessary bloodwork in order to make determination. He did not mention to me the possibility of going blind….I suppose he did not want to frighten me before a final diagnosis. Last night I went on Mayo.com and researched this and was horrified to hear how serious this could potentially be. The going permanently blind bothered me more than anything else and still does…I think I am in a panic mode right now. I am going tomorrow for all of the blood work and they are doing the CT Scan of the head on this Friday at noon. Right about now my temple is throbbing and I am afraid to go to sleep as I may wake up without vision. I wish that my Specialist would have stressed getting me into the diagnostic areas that same day, if possible. Right now, I feel like I am losing precious time! I hate the thought of worrying the entire weekend for the results and perhaps they will be able to hasten the process given my circumstances. If not, my sister has RA and perhaps I will ask her for some of her Prednisone to get me through the weekend until I can see a Neurologist. You can tell that I did not see this coming….I was blind-sided, pardon the ill pun! Once again, thank you for your input. I will let everyone know what is going on as soon as I get the test results!
so what happened with your diagnosis?
you sure are going through alot! I have a question for as I have alot o crazy symptoms yet to be diagnosed. One symptom Intracranial Hypertension which my neurologist thinks i might have but is scared to do a lumber puncture because it can cause alot of harm I guess. Nothing has turned up on the normal MRI and CT angiogram, so I am wondering how you got diagnosed. Basically I have been in bed for 4 months, I have right temple muscle that swollen (not tmj), if i go and try do anything like go to the store I get nauseous dizzy, and then the light and sound become strange and my body feels light sometimes, get tension headache and all head is sore to touch and lost some vision in right upper eye, my hears get plugged like on a plane. I am just asking because this seems pretty rare, and I am afraid to do anything now, any info would be appreciated and thanks
Hi, I have not posted since late August of 2018, but wanted to share something that just occurred to me two days ago. I went to Northeastern WI on Sunday and the weather was a good ten degrees colder than here in Milwaukee to attend a musical production. I had not been experiencing any Temporal discomfort since April/May of last year and as we were walking to the parking lot outdoors after the production, the left side of my head (temple and behind my left eye slightly) began to hurt. It came on very gradually without any warning but not as bad as in the past…after getting back to Milwaukee later that evening I could still feel it so I thought about it and wondered if it was attributed to the cold drop in the weather and with that said, cold weather causes constriction….so, why wouldn't warmth cause the arteries to expand. I took a clean face wash cloth and ran extremely hot water over it and went to bed and placed this very warm face cloth on the left temporal and further up to my forehead and upper head. I fell asleep and in the morning when I woke up, the pain was gone, which I was very relieved. Then I decided to take two Ecedrin Migraine tablets for good measure and so far I have not had any more discomfort. Now, I am just offering this as something that I came to my own conclusion to try….no medical professional or any other person ever suggested it to me, but it did offer relief for me. I can't say this will work for everyone, but you may want to give it a try.
@charann2000 – I was surprised to see you back on this site. Have you had any vaccines recently? My neurologist at Mayo said to be very careful with vaccines. I had the flu vaccine after I got off of Prednisone and had some problems and thought my GCA was back. They took Sed Rates and a CRP and they all came back okay. Still have a little discomfort.
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