My rheumatologist agreed yesterday to drop my prednisone dosage from 60 to 50 mg. I am hoping that will make a difference with my vision, which is still very poor. My left eye won’t focus at all and my friend who took me to the doctor yesterday told me that it’s sometimes crosses. It also hurts, (that left eye) along with pain and pressure on the left side of my head. I had a pretty good day yesterday in terms of energy and pain, but today’s a big downturn. I have a low-grade fever also of 99.4. And I just feel very crummy. I had a thought today that I wonder about: the biopsy itself causing a problem? (My eyesight issues didn’t happen until days after the biopsy.) I found slight information about post-op infection and foreign body (hair) entrapment. I couldn’t find any description of symptoms of those two things. There’s no redness near my incision, but I can see a bit of thread still sticking out, which was supposed to dissolve.
in other GOOD news, I have been approved to receive a tempera from the Genentech patient foundation, as I meet their guidelines. It should arrive next week.
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Lenore58
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If I were you I would go to the ER - today. For one thing, the double vision and pain you are experiencing shouldn’t be ignored in the hope that these symptoms will reduce with steroid reduction. In addition, a temporal biopsy isn’t always conclusive in diagnosing GCA; much depends on the part of the artery being examined. The stitch that hasn’t yet dissolved is probably contributing to the discomfort but pain is another matter. I would be asking for further investigations for completeness.
I have suffered with double vision in the past (diagnosed as sixth nerve palsy as opposed to Giant Cell Arteritis) and on reporting this to rheumatology was referred urgently to hospital (the following day) where a number of investigations were carried out leading to a Fresnel prism being fitted that day. The relief was remarkable. The prism strength was reduced at intervals until the double vision was corrected.
You are clearly concerned so please advocate for yourself in this situation. I am pleased that you have a friend to support you. 🙂
I did seek it. I was in my rheumatologist office the day (on Tuesday) before I wrote this post (on Wed) I told her my symptoms and she believed it to be the high-dose steroids and that’s why she lowered it by 10 mg. The Friday before I was at the ophthalmologist getting checked out for the same symptoms. He also said he believed it to be the steroids. Today I put in a call to the Doctor Who did the biopsy. There is a little white stitch sticking out of my incision still. The biopsy was three weeks ago, and the wound was healed within a week, but that stitch is still sticking out of the bottom of the incision. They were supposed to be dissolvable stitches… I am wondering if there’s irritation inside causing some of my symptoms. Anyway, I left a message, and hopefully will go get that checked out tomorrow. Meanwhile, the vision in my left eye has cleared again! I can read clearly a foot in front of my face again. Everything is stopped up all beyond that and I found out that my eyes actually cross, anyway, tomorrow I will be contacting the surgeon’s office, my rheumatologist, and the ophthalmologist again.
I had a small tag of stitch like that at the end of my c-section scar - it lifted off! The stiches dissolve inside the body but often the bit to the outside where they cut the thread when they have finished is held in place by the scar tissue around it,
Lenore, I am not qualified to recommend that at this point. Usually, a dramatic reduction in Pred is not tolerated very well. IF you have GCA that is also an issue. Getting a second opinion is not a bad idea. I am doing that with the afib I have developed. Wish I could be of more help. Praying you get the advice you need.
Sorry; recommend what, exactly? You mean the steroid reduction? It’s only 10 mg: I have gone from 60 to 50 and I only weigh about 120 pounds, so I have been told by my rheumatologist and ophthalmologist that is a high enough dose to control the GCA; and they believe it’s not the GCA disturbing my vision; it’s the steroids. My ESR is not elevated and my C-reactive protein is barely above normal, and it’s been on the way down since the high-dose steroids started, so I think they must be right. I can now read again with my left eye, and the pain has subsided, so I think lowering the steroids is actually starting to work. I’m praying so! My Actemra is supposed to be arriving early this week, so it’ll be good to get started on that.
10mg may be enough to control GCA when you are using Actemra as well but there are several here with the practical experience that says you can't guarantee it otherwise. In fact, half of patients with GCA need 10mg of pred to control their GCA even when on Actemra since there at least 3 different mechanisms that can create the inflammation and only one is controlled by Actemra.
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