Wellness

[tends2dogs]

Anyone diagnosed with this?  If so, how are you handling the treatment?  How long have you had it?  Any info would be appreciated.

TIA

[Brigitta]

I have giant cell arteritis in my left eye. I've been dealing with it for 2 years. I was put on 80 mg. of Prednisone every day for 6 months. Then I was weaned down until I was taking none. I was then put on Actemra, which is one shot every week. I'm on that indefinitely. Actemra has just recently been approved for treatment of this disease. It is not a steroid, like Prednisone, and does not have those side effects.

I hated taking that much Predisone. It caused weight gain, sleeplessness, degeneration of my hip resulting in a hip replacement, hair loss, feeling depressed, and other weird feelings. BUT it stopped the disease from progressing. It's like a "wolf in sheep's clothing"! I lost my periferal (sp/?) vision on the left and bottom of my eye.

I've had to learn to adjust my driving and reading to accomodate my problems.

I don't mean to scare you, but it helps to know someone who has experienced the problem and has learned to live with it. Good luck!

[tends2dogs]

@Brigitta I just saw your response and I thank you for taking the time to respond.  My DH is in the process of being diagnosed.  The doctor suspects GCA, but is waiting to have a biopsy done.  Did you have that done and how did that go?  I wish he could have begun the steroids just to get him started.  His symptoms were tender skin on his face and head, light flashing, jaw and teeth pain.  The pred side effects sound horrific, but so does going blind.  Is it known why people get this?  What type doctor do you go to for this?

I am sorry I am asking so many questions, but I always feel it is good to hear from someone going through the same thing.  Doctor's don't have that advantage. 

 Thanks again for sharing and I am glad you are adjusting to life with this.  

[Brigitta]

I'm surprised his doctor didn't start him on prednisone right away. It keeps the disease from doing more damage to the eye. I had the biopsy done about a week after starting on prednisone at the hospital. If the results are not GSA, then he can be slowly taken off  of the prednisone. I had similar symptoms to your husband.

My doctor was head of the eye disease dept. at the University of Maryland. However, he has since retired. I am now under the care of a Rheumatologist. She has taken me off of prednisone and onto Actemra, which is kinder to the body and is newly approved as a treatment for GSA.

Good luck to your husband. It's not a fun disease to deal with.

[spumoni99]

My husband was diagnosed with this when he turned 50 so it was 20 years ago.  He had very bad headaches so I took him in, they put him on prednisone right away.

I believe a cat scan was also involved, he has had no further issue 20 years later I think he was just on prednisone for a while.

[tends2dogs]

@spumoni99  and @Brigitta   Thank you for responding.  After reading about this online, I wondered the same thing about delaying treatment.  He called the doctor's office and is going in tomorrow.  In the meantime, he saw his eye doctor and the first thing she asked was if he was on steroids.  I am hoping that he can get started on a treatment tomorrow even though he hasn't had  the biopsy yet.  He is going to ask about the drug you mentioned, @Brigitta .

This is pretty nerve wracking when you consider going blind.

[spumoni99]

As long as they get him on something soon he should be fine I definetely wouldn't let them prolong it for too long though.  Prednisone is not good for you either so its good another drug has been approved.  

[Brigitta]

I just wanted to tell you that Actemta is very expensive. My doctor was able to get it for free for me. The company will provide it for free if you fall under certain perameters that they have set up. You should keep that it mind if you are using  Actemra.