Trying To get Answers About GCA

Hello @alandy233, I know it can be scary and frustrating when you are trying to understand what is happening while not knowing what the future holds for your vision. There are many different discussions on GCA that you might find helpful in learning more about what other members have shared with their experience with GCA. I did a search of Connect using GCA and vision so that you can scan through the other discussions. Here is the link that lists the discussions and member comments - https://connect.mayoclinic.org/search/discussions/.

If you want to learn more about GCA, the Vasculitis Foundation has a lot of helpful videos on their YouTube channel here - https://www.youtube.com/@vasculitisfoundation/search. One of the videos is GCA patient stories that might be good to watch - https://youtu.be/PJGtR0-xboo.

@tsc, @jeff97, @susang222 and others who have GCA may have some information or suggestions to share with you.

@alandy233 I'm sorry you are having such difficult problems with your vision. I was fortunate that my vision was saved by infusions similar to what you received and 6 weeks of 60 mg prednisone per day followed by a slow taper over the next year. I also began taking weekly injections of Actemra 6 weeks after I was diagnosed with GCA and PMR. That helped me to eventually get off of prednisone.

I am surprised that none of you doctors have suggested Actemra. Is there some medical reason they aren't prescribing it for you? When I google "does Actemra help preserve vision in gca?", it says the following:

"Yes, Actemra (tocilizumab) helps preserve vision in Giant Cell Arteritis (GCA) by acting as an effective "rescue" therapy for patients whose vision worsens despite high-dose steroids, potentially preventing further loss or even improving existing vision, especially when started early in resistant cases, though its main role is reducing steroid dependence and flares, according to Ophthalmolgy Advisor and National Institutes of Health (NIH).

How it helps:
Rescue Therapy: It's used when standard steroid treatment isn't enough to stop vision loss, with studies showing it can rescue vision in some patients with glucocorticoid-resistant GCA, note Ophthalmology Advisor and National Institutes of Health (NIH).

Prevents New Loss: In patients without visual symptoms at the start of Actemra, new ocular problems often don't develop, according to a study in Sage Journals.

Improves Existing Loss: Some patients with vision loss (PVL) before starting Actemra have shown improvement, particularly if treatment begins sooner, state National Institutes of Health (NIH) and Sage Journals.

Reduces Steroid Taper Relapses: Actemra helps patients stay in remission longer while tapering off corticosteroids, reducing relapse risk, according to Review of Ophthalmology and The New England Journal of Medicine.

Key Takeaway: Actemra is a crucial tool in managing GCA, offering hope for preserving vision when steroids fall short, but its effectiveness is highest when used strategically, often in combination with steroids, and continued long-term to prevent flares, notes YouTube and The New England Journal of Medicine. "

Actemra can take up to 3 months to take full effect, so the other medications might be needed to control your GCA until the Actemra can take effect.

I am not sure about this group, but I know that there are several members of the PMRGCAuk support group that have lost at least some of their vision from GCA. You could check with them about your issues. You can go to healthunlocked.com and join the PMRGCAuk community so that you can post to that group.

In regard to what your ophthalmologist is trying to accomplish with your medications, I think he or she is trying to get your GCA under control. Apparently last year your taper was too fast, or else you could be resistant to steroids, so your doctor is starting you back at a high dose of prednisone plus the methotrexate. The folic acid is needed to offset the side effects of the methotrexate.

Please let me know if I can help you in any other way.

@jeff97 I want to thank you from the bottom of my heart for your response. Your message has given me more useable and valuable information in the short time that it took you to write it than I have gotten in the entire ten months that I have been dealing with this. Thank you, Thank you, THANK YOU!!!!!

As to your question as to why my Doctor is not advocating for Actemra I can only speculate but I suspect that perhaps he does not have as strong of or the type of "relationship" that he may have with the manufacturer of Actemra as he has with the manufacturer of Methotrexate. I worked for Baxter Healthcare 30 years ago and we gave huge perks to providers that we had strong "relationships with ands in this instance "relationship is spelled "profits". I'm not meaning to be snarky, it's the way of the world.

I also believe that I am his first patient who is dealing with GCA induced vision loss. He has been very cautious in his approaches to treatment for me. I believe this is one reason and maybe the main one why his Prednisone tablet dosages for me have been so low. From all i am seeing for GCA and vison loss 20Mg a day is a very low dose. At one point me had me down to 10Mg a day. We found out in very short order that that was just not working and doing more harm than good so he upped it to 20Mg per day and I have been there for a while.

Another possible factor is that I believe my Doctor is trying to reduce or manage possible side effects. My research is indicating that Actemra has in some cases greater, more, and worse side effects than Methotrexate does. I will be talking with him tomorrow about Actemra. Again, thank you. I will keep you and this group advised.

@alandy233
I think that you're correct about your previous doses of prednisone being too low to control the GCA. I was started at 60 mg, and stayed there for 6 weeks. After that I tapered 5 mg every 2 weeks until I got down to 20. I have read that some people even start at 80.

In regard to the side effects of Actemra, I have been taking weekly injections for a year and a half, and I haven't had any side effects. I had a little extra fatigue after the first few shots, but that was all.

If you do start taking Actemra, you will still need to slowly taper off of prednisone. It can take Actemra up to 3 months to reach full effect, so you need a relatively high dose of prednisone during that time to control the GCA. It took me a year to taper off of prednisone once I started taking Actemra. With your vision problems, you might need to taper more slowly than that.

Also, Actemra doesn't work completely for some people. Actemra works by blocking IL-6, one of the main inflammatory substances in the body. If your GCA is mainly caused by IL-6, then Actemra is very effective. It has worked very well for me. I haven't had any symptoms or flares since I first started treatment. But if your GCA is caused by IL-6 plus other inflammation, then you will need to keep taking a small dose of prednisone (approximately 7 mg or less) along with the Actemra after you taper. You won't know how effective Actemra will be until you try it.

One more thing - you can take Actemra by weekly or biweekly injections, or through monthly infusions. Both methods are effective, so the choice of which one to use would depend on your circumstances, such as type of insurance and finances.

Good luck with your treatment! And do keep us advised.

@alandy233, how way your diagnosis of GCA reached? Did you have a temporal artery biopsy?
I had three incidents of visual disturbance before being diagnosed, but I didn't have any vision loss from GCA. I was treated with Prednisone, then off it for a year before I relapsed and had treatment with prednisone for another year. Currently, my inflammation marker - CRP - is normal.
Do you know how much experience your current doctors have had in treating GCA?
I'd be interested in hearing what your Rheumatologist has to say. It's too bad you have to wait for an appointment in March. Maybe you can you get on a cancellation list for a quicker appointment.

@alandy233
& re: Jeff.
I also have PMR/GCA.
My rheumatologist put me on 60 mg of prednisone immediately over the course of a year. I was taper down to 8 mg very slowly.

During that year I was also placed on Actemra once a month Infusion. Fortunately, the Actemra worked very well for me. My vision is good. I’ve had to have it checked by ophthalmologist as well as optometrist every three months until I was deemed in remission and now it’s every six months.
For just over 2 years this was a good solution. Unfortunately I had an unrelated situation where I ended up with a large wound on my leg. I also have a bleeding disorder, we couldn’t get the wound to close or heal so I had to come off my meds ( Actemra and some others) for awhile. After about 3 months they started me on methotrexate. At that point I was in such pain I didn’t care about side effects or GCA possibly coming back - it did not.
I’d been on the methotrexate for just over 6 months now. I’ve had some difficulty with side effects. If it was my only option, it’s better than the pain and not having vision. However I’m still not convinced it is the correct answer for GCA. & PMR. Certainly not for me. And my SED rate and inflammation bears that out.
So my rheumatologist and I have agreed that I am going back on Actemra next week! I’m very happy about it. I really look forward to a better quality of life.

Thank you Jeff for all your input and I wish you well. But alandy233 I really really would feel so much better if you could see a rheumatologist much sooner than March. If you can call around to a couple of them or if your PCP can, whoever does, it must tell them that you have a diagnosis of GCA somebody should get you in immediately that is an overnight diagnosis must be seen kind of thing. It’s terribly important. I wish you great success, and all good things.

@tsc Thank you for checking in and sharing. To be honest and this is just my opinion I don't know how much experience my Doctor has in dealing with Vision Loss related CGA. From the way he is handling my treatment and being conservative with the medication protocols I have a feeling I may be his first GCA w/ associated Vision Loss patient.

I picked up the new Hi Dose meds today for the updated protocol and I will start with the Prednisone and Folic Acid tomorrow morning. My Doctor suggested that I wait until Saturday to do the Methotrexate due to the possibility of side effects and what they might be and I can agree with that.

I did call the scheduler at the Rheumatologist to try to get an earlier appointment and got a cold reception. I don't know where you are but here owns and/or runs most of the hospitals and outpatient facilities and they are not known for being that warm and fuzzy. Not a lot of orange slices get passed out.

I will continue checking in with this good group and will keep everyone advised and updated.

You definitely need a good rheumatologist! And quickly! It took six months and five specialists for my diagnosis of GCA, but mine was not temporal. It was in the upper aorta. The vasculitis website is excellent, but they might even help you with a referral since time is extremely important for your situation. It’s worth checking out. I have been on prednisone, methotrexate and actemra at different times. Every medication has serious side effects, you wind up choosing the one that keeps the inflammation down with the least/worst ones. It’s a rare disease so it’s not hard to understand why your doctor didn’t fully know how to treat it. Vasculitis foundation!