I am loosing my vision

I am suprised that your dr. made that assumption at the beginning of treatment. You must have a very bad case. I am sorry that you are loosing your sight. Has he said if it would be permenent? I would certainly be shaken with the news. I mean how would anyone take that kind of information. Then I guess you would make plans too. Make arrangements for sight loss. But the bigger question here is not how we take it, it is how are YOU doing with this?

Hello ielllen,  

I do not have GCA, I have PMR, however I have a pretty keen idea of what you are feeling as I have an eye disease that is taking my vision.  Mine has been very slow in its progression and I am still able to read quite well.  My peripheral vision is totally gone and I am blind at night.  My greatest fear from the onset of the PMR has been that of GCA.  I am not sure if I can offer any comfort to you, but I am wonderiing if you hae been under the care of an ophthalmologist who is well versed in the effects of GCA on vision.  I highly recommned that you see a specialist as soon as is possible.  You may be able to save what vison you still have.  I was surprised to read that you doctor told you three years ago that you would lose your sight.  I had always thought this was a possiblility with GCA, but had not seen this in such definite terms.   I am wishing you well and hope that something can be done to help you.  

Keep me posted, I hope your vision does not get any worse. 

Take care,

Donna

I am baffled! If GCA is untreated you can lose your sight, but yours was treated! And for 3 years! Your Optic nerve has been saved. What dose are you on now? I think there must have been a misunderstanding.

do you have visual problems? I think you need to see your doctor again and clarify this. 

First, I would get a different rhematologist!  (and not go with the advice of someone merely like me from online). It's my understanding that the blindness can POSSIBLY occur from the CGA, not the PMR itself. I have polymyalgia, and my late mother had CGA. They called it "temporal artrtitis," and on the sdvice of her doctor she stayed on the prednisone to avoid blindness. Her sister, my aunt, also had GCA and she did go blind before she passed away. Having no more than this to go on, I'm fairly convinced that this stuff is genetic. Because of that, I am offering an alert to all my relatves on my grandparents side (mom and dad of my mother and aunt) to be on the watch for the symptoms of PMR or GCA. That's because it's not always clear what the ailment might be. (Dr. thought I had Lyme disease because of similar symptoms.)  Interestingly, my mother was on prednisone for TWENTY years, and her dr. said she must have set a  record for that long under prednisone without serious side effects! This is serious stuff, so take care of yourself energetically, including finding a doctor whom you can trust absolutely. I read someplace that most of us (that means ME too) will always shop for a car or even a hat with more scrutiny than choosing a doctor! Stay well, and upright! (and, if you don't have one, get the best medicine you can buy--a DOG!) Oh, I'm searching for another "rheumy" since he told me that the daily exhaustion and any dizziness was not connected with PMR. Nonsense!

--Ron in Elmira

Hi, iellen-  I can't tell from your message whether you have begun to lose your sight or you are anticipating this based on what your rheumatologist said. What happened during  the "flare-ups" you mentioned?

As far as I know, GCA does not lead to a progressive loss of vision.  GCA involves inflammation of the walls of the blood vessels that carry blood to the optic nerve and retina (among other places).  If the inflammation is so severe that the blood vessel narrows and blood flow is blocked, the nerves can die, causing blindness.  This is like a stroke and happens suddenly. If you are treated and the inflammation is under control, this should not happen.

It is not like other disorders that progress over time, like macular degeneration.  This is very common in older people.

If you are gradually losing your sight, I think it is likely this is caused by something else and you should look into the cause.  If you are not losing your sight now, I don't think you are at any more risk of blindness than people without GCA.  

 I am not a doctor, but your message raises a lot of questions that you should discuss with your doctors. I hate to think of you accepting vision loss as a result of GCA instead of finding out there is another cause!  

I am also wonderinfg i fyou have lost any vision.  Please let us know.  I agree with others who feel you should perhaps change doctors.  If your vision is fine, your rheumatologist has caused you three years of worry over something that most likely will not happen, so please let us know how your vision is.  Thanks, Donna

BE VERY CAREFUL about profoundly accepting the word of ANYONE online, including me! I am certain from people I know and their doctprs' diagnoses that that the greatest danger of "temporal arteritis" is that it can result in blindness.  It's why my mother's doctors kept her for a long time on prednisone, and why my aunt DID become blind, as well as someone else I know. But go only by a doctor you trust. Not us. Your best bet if there's any doubt is to go to a "teaching" hospital where med students are being trained and ask for the top expert in this matter. This is serious stuff and you need to get the best judgment.