Vision Issues

[baxternoni]

Hi everyone,

I have GCA, AS, AFib, plus a couple of other problems. After 14 months I was finally able to get off prednisone. I have been on Actemra for a year. I see various specialists for all my different medical issues but they all communicate through a data base. I get bloodwork every month and last month I found out that my WBC were very low. My rheumatologist lowered my Actemra dose from weekly injections to twice a month. My WBC is now back to normal. My problem is that I am having problems with my vision. It gets blurry especially when for example I am on my iPad then switch to watching TV. I got my vision checked while I was still on prednisone (5mg). The change that they made was I got larger prisms in my glasses. I wear progressive lenses but it was recommended by several of my doctors to get a second pair for near vision work. I was doing well but for a couple of weeks I have noticed that I am getting blurry vision again. I don’t know if it is the reduction of Actemra or maybe my vision is changing now that I am off steroids. Has anyone had this type of problem? I am also having some head/jaw/eye pain but only for short periods at different times of the day not a whole day of pain. I am seeing my rheumatologist next week but you guys are very helpful, so I value your input. Sorry for the lengthy post.

[baxternoni]

No Actemra does not work for AS. I think that being on Humira for so many years kind of helped to stabilize my AS. I have flares but I just take extra strength Tylenol. My problem is that I also have costochondritis and scoliosis so I have a lot of shoulder and neck pain. I really never know which of my issues is causing my problems. I have not had uveitis/iritis for over 20 years. I had a lot of problems with these before I got diagnosed with AS. My brother who also has AS also suffered from recurring eye issues like I did.

[baxternoni]

I have a great ophthalmologist who is also a professor at the university and is very familiar with GCA. He actually has videos on YouTube for his med students. I have listened to a few.

[baxternoni]

Dr. Andrew Lee is currently the chair of the Blanton Eye Institute at Houston Methodist and professor at the Weill Cornell Medical College.

[baxternoni]

Tonight is the last evening of a freeze. It hasn’t been this cold for 100 years. We like our warm weather. Being without electricity for almost two days was not fun!

[DorsetLady PMRGCAuk volunteer]

As you were diagnosed with GCA less than 18 months ago, and now completely off Pred, I would be concerned about the return of head/jaw/eye pain irrespective of its intermittent circumstances.

Please mention these symptoms along with blurriness to Rheumy next week.....and keep us informed.

[jinasc in reply to DorsetLady]

AS Dorset Lady says, you really need to discuss this with your Rheumatologist.

The only difference is I would be doing it now.

Actemra is a steroid sparing agent, not a replacement for pred.

Yes, I see you were off pred very quickly - but recurring jaw pain, blurry eyes etc - fast action as far as I am concerned.

[baxternoni in reply to jinasc]

I had blurry vision has been constant for almost two years. It got worse when I was on prednisone. I had a lot of inflammation in the white of my eyes. My ophthalmologist who I see regularly said it was because of the prednisone. It went away when I got my new glasses but then I stopped the prednisone I feel like there has been a change in my vision. I seem to see better without my glasses when I read. As far as pain, there are days when there is none. I also have AFib and I am on four different heart meds. I take some of them twice a day.

I do not want to get on prednisone again because it gave me many problems that I am still suffering from.

[jinasc]

As Dorset Lady says, you really need to discuss this with your Rheumatologist.

The only difference is I would be doing it now.

Actemra is a steroid sparing agent, not a replacement for pred.

Yes, I see you were off pred very quickly - but recurring jaw pain, blurry eyes etc - fast action as far as I am concerned.

[PMRpro Ambassador]

By AS do you mean ankylosing spondylitis? That can cause similar symptoms to GCA as it too can reduce the blood flow in the neck. Was your GCA biopsy-proven?

As we age it becomes harder to switch from close work to distance viewing, even with progressive lenses as the muscles are slower to adjust. It is good practice to to look up at something far away for several minutes every so often when working at a screen.

[baxternoni in reply to PMRpro]

After being sick for two years, thinking it was asthma/heart related and many tests I was diagnosed with blocked subclavian arteries. My second stent occluded after one week. I also have a blocked artery in my head/neck area that is not operable. After another battery of tests, my cardiologist sent me to my rheumatologist because she suspected vasculitis. With all the symptoms I had he diagnosed me with GCA (2019) and put me on prednisone that day because my vision was getting worse. Because I was on two blood thinners I couldn’t get a biopsy. I was sent to the neurologist and was given a Transcranial Doppler. It showed poor blood flow that confirmed GCA. After one year of treatment, I had another test, and arteries are functioning ok.

[PMRpro Ambassador in reply to baxternoni]

That's good. Bit complicated wasn't it!!