Adjusting to life with temporal arteritis

Just diagnosed. On 60mg prednisone for approximately 6 weeks. I have a side effect that none of my doctors can identify. I have jaw claudication and when I chew two golf ball size lumps appear between eyes and ears. Has anyone experienced this?

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Hello, I am 43 and have recently become a regular at my doctors office and at the Neurologists office. This all started with a very sore neck. Then a strange twitching behind my ear about an hour later. My jaw felt sore like a stressed out muscle. Then my right cheek started hurting followed by my right temple. The next day I had pain in the back of my head in the crown area along with the other symptoms. Just to touch or to brush my hair or where my hat. My eyes had started having problems weeks before this. I noticed that my eyes would go blurry a lot. Much like looking through water. And I felt a lot of pressure in my eyes. Then my ears started having a lot of pressure. So far since the neck and temple thing started its been 4 weeks and it's only getting worse. I now find myself tired all the time and have a great lack of energy along with the coming and going of the above symptoms. I also discovered that if I rub or touch especially my right temple it will set everything off big time making for a really bad day. I had also notice a tired feeling in my arms and if I try to touch my back with either arm I get a sharp pain and just can't do it. This has never been a problem before so I don't know. At first I just thought I had over done it but is hasn't gotten any better. My wife is a nurse of 11 years and she thinks it is this Temporal Artritis. As in all our searching this is the only thing that my strange symptoms match nearly 100%. It has made sleeping an issue as well as the pain in my temples and jaw and head make laying on a pillow uncomfortable. I have had all kind of blood tests for all kind of ideas the doctors had. They all come back normal except that if you look at the graph you can clearly see some minor changes. I have had an MRI and CT scan to make sure it wasn't a tumor or something and last week I had an EEG. Next month I have a scheduled ultrasound on my arteries. Not sure if he is doing that to check for Temporal Artritis or if you can even really find any clues by way of ultrasound. But at this point my Neurologist says that it can't be Temporal Artritis because I am under 50. I am frustrated and just want to to feel good and get on with life.
As a side note. I am not a normal 43 year old as back in 2008 I was in a major motorcycle accident where the end result was that I lost my right leg, crushed my hip and have 28 screws and two plates holding it together and I lost my entire left back muscle as it was used for a muscle flap in my right leg that I had amputated a year later. I spent several month in the hospital and was only allowed home because my wife is a nurse. So, I am not typically as active as a normal 43 year old man. I sure would like to be though. So I don't know what to do at this point. I do t want to go blind and I sure would like to get a good night sleep. I found this topic just doing a Google search on this topic as I was looking for more info. I guess I though I would go to the community of people who have it and see if my symptoms truly do add up to what yall are or have experienced so that I can determine whether to continue to push my doctors to look into to this. Any ideas, advice or questions are fully welcomed! Thanks so much and many blessings to you all!

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@amptrooper - You said you have had all types of blood work. I guess they have done a Sed Rate and CRP tests. My Sed Rate was 38 when they diagnosed me at Mayo Clinic. It does not have to be really high to have GCA. Also, had a biopsy the next day and it confirmed the diagnosis.

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@bgaro-The surgeon that did my biopsy said if the first side came out negative then they would have gone to the other side. I was so happy the right side came out positive so they did not have to do the other side. None of the doctors I went to in Orlando, Florida knew what was wrong with me. Finally we drove over 2 hours to Mayo Clinic in Jacksonville and went to the Emergency Room. I was diagnosed in 1 1/2 hours and they set the biopsy for the next day. Your Sed rate was a lot higher than mine was. The most important thing you can do is taper down slowly. I had problems from 20 mg to 17 1/2 mg and then had to go back to 20 for a few weeks and then went down 1 mg every 2 weeks to 10. It was a slow process but worth it in the long run. If you have any questions along the way let me know. It is a long journey and then of course the weight gain. You will gain weight in areas you would not have thought about. Good Luck!! Have you ever had the old Shingles Vaccine? They thought the reason I did so well was because I had the Shingles Vaccine.

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