Trying To get Answers About GCA

Better to stay on high dose prednisone and not taper so quickly.
Know your numbers for ESR and CRP. Ask for a lab order for IL-6
level and hepatitis and TB screens which the rheumatologist would order
before Actemra. You could contact your prescription plan and see
if it covered. The manufacturer may have a program to help pay if
you qualify for assistance. I think most rheums keep the dose at 60 until
you see improvement.

@seniormed On 05.29.25 my ESR was 7mm/hr. On 12.-3.25 my ESR was 2mm/hr
On 12.03.25 my ESR was 2mm/hr

On 05.29.25 my CRP was 2.52mg/L
On 12.03.25 my CRP was .07mg/L

In both instances the numbers have decreased. What does this tell me? Thanks.

This was an interesting weekend. Saturday was my first day taking the Methotrexate (15Mg Methotrexate with 60Mg Prednisone) and as I said it was interesting. I was expecting side effects like maybe muscle soreness, backache, stiff joints, nausea, diarrhea or similar and those were not that bad. Actually other than a bit of nausea I did OK by myself as far as that went.

What I did not expect and cannot wrap my head around is the huge hit that my vision has taken and is still taking. I know that Prednisone and Methotrexate both have vision loss and blurred vision as side effects but WOW this is a whole nother level! The blur and the haze have been as bad if not worse than anything I have experienced since this started and it came on within two hours of my taking the medications. I will say that for a short period of time I did experience a slight improvement in the contrast and clarity of my vision so that was something.

Sunday morning when I woke up I got a slight cause for hope. My Field of Vision (FoV) was brighter and the clarity and contrast showed a little improvement but that was short lived. Within a few hours of taking my Prednisone my vision started to slide again and now it is back at the low level(s) I have come to expect from this. I will add that for most of Saturday my area had dense, low hanging cloud cover so there was not a lot of available light and for Sunday we had rain all day and associated cloud cover making for a rough weekend.

When I woke up this morning it seemed like my vision has slipped even more. It seems like the blur, haze, and tunnel vision have continued to increase and I am wondering when will it end if ever? The blind spots have increased in size and number as well. Not I am finding I have to feel around on my counter just to find my pills and that is sad and makes me very angry that it has come to this.

Once my body adjusts to the high doses and/or once I start tapering down will my vision improve or am I just out of luck? Life is not at all kind and I am sure tired of all of it.

@alandy233 Have you called an ophthalmologist to be evaluated? Your post has me so worried. Did you call your doctor when you first had vision problems?

Yes, please consult an opthamologist asap - tell them it's urgent. or get your dr to get you into one...

Hi Everyone:

This is the first time in a few weeks that I have logged into this group. I have been dealing with some very severe depression issues related to my GCA w/ Temporal diagnosis as well as my overall situation. I was diagnosed with Clinical Depression as well as PTSD and Anxiety 10 years ago and it comes and goes. This GCA and knowing that I could very well go completely blind is not helping at all. That plus it is the dead of winter here and temps have been in single digits for weeks. Even a healthy person has trouble with their vision in these kinds of temps and with a person whose vision is compromised it is so much worse.

It also bothers me greatly that we have people in this group that either can't read or they just don't care. People who just write whatever comes to mind like: "You need an Ophthalmologist" or "You need a Rheumatologist". If people would just read what I have written that is right in front of them they would see that I am working with an Ophthalmologist and have been for the past seven months. There is not much known about Temporal GCA and they are struggling while I sit on the sidelines going blind.

The same thing with a Rheumatologist. I have an appointment for March and it is the best I could get and yes I am on their Cancellation List. When I first called to get the appointment it was eight months out but I had to take what I could get. I am not happy sitting around on my hands going blind while I wait for these people to get off their asses and do their jobs but I have no control over this so I have to do the best I can and it is driving me crazy. When I do get to my appointment I fully intend to tell whoever I see that I am not happy waiting eight months to get in to see them while I go blind and they need to get off their asses, cowboy up, and get it done!

These people here who read one sentence of a message and then spout whatever comes to mind are insensitive and cruel and need to be ashamed of themselves and grow up. For me if you don't have anything useful to contribute then don't write anything at all because I DON'T HAVE TIME and you will not like the response you will get from me. These are serious, life altering, and in some cases life threatening issues that we are dealing with here. Let's treat them that way and help each other out how about it??

Now if everyone will please excuse me I am going to finish what I started a few hours ago which is getting blinding drunk so I can pass out and for at least a few hours not have to think about how badly my life sucks. Caio.

@alandy233 I'm sorry you are going through this. It sounds like you're doing everything you can while waiting for an appointment. I'm not going to say that I know what you're going through. PMR/GCA showed up in my life in July 2024. While researching the diseases, I came across the Mayo PMR/GCA support group. They have been a great resource. They are good 'listeners' (I.e. readers) and provide constructive advice, based on their journey with these diseases. If you aren't a member of that support group, I recommend it. There are individuals that have dealt with GCA/PMR for years.

I find that reading is basic with social media and a lot of people don't have a grasp of it. Good luck.

Wow! Way to crap on the people trying to offer any support they can. Best of luck.

Hi Everyone:

I want to share this and hopefully someone might benefit from it. At my last appointment my Ophthalmologist put me on Lanaprost Solution 0.005 to manage my eye pressure. It was high enough that he was concerned. He was unclear as to the duration that I should be on it so I just used it for a few days prior to my appointment and set the rest aside. At my appointment my eye pressure was within limits so I moved on.

Unfortunately, my Ophthalmologist is not good at communications and I don't feel he tells me the things I need to know. He ignores my questions and I have to do searches on the internet and here to get the information I need. I have been doing a lot of research on steroids and vision loss/blurred vision and I found that steroids can and do raise the eye pressure which if unchecked can cause in some cases vision loss so I am going to start using the Lanasprost again and will continue to use it as long as I am on the steroids (I am taking Prednisone and Methotrexate).

I want to stress that these are my results and my decisions but I am sharing this so people here can see other points or view and hopefully benefit. Have a good evening everyone.

@ropnrose Thank you for your message. Do you happen to remember the name of the Mayo PMR/GCA support group that you mentioned? Can you give me the link? I have been searching for it and not finding it. Thank you.