One of the most frightening scenarios with GCA

[Blurry62]

I'm wondering if anyone has experienced vision loss, gotten the 1000 mg of IV prednisone I've read about , and willing to tell the tale?

[PMRpro Ambassador]

Sorry - really not clear what you are asking.

[Blurry62 in reply to PMRpro]

What does it feel like to have 1000 mg off steroids coursing through your body for three days?

[PMRpro Ambassador in reply to Blurry62]

There aren't many who have had the high dose pulse therapy - gifford is one of the very few and doesn't say how they felt on it. I imagine you are flying!!!!!

[gifford7 in reply to PMRpro]

re: 1,000mg/d x 3 day methyl pred infusions. Yes despite the fact I was recoverng from a stroke, I was flying all over the hospital the last 2 days; over to the cafeteria,

to front entrance area, to emergency room, over to childrens hospital. All the other patients in the stroke ward flat on their backs. It helps to be a folkdancer.

[Blurry62 in reply to gifford7]

[gifford7]

My story: Lost upper half of vision left eye Nov 2017, during a 45 min. ride in car with eyes closed, 11pm. Diagnosed with GCA 18hr later. Given choice of 80mg/day oral prednisone or 1,000 mg by infusion with no explanation of pros/cons or how would they do an infusion 5pm friday at clinic closing time. CRP=84; ESR=60. so picked up 80 mg/d pred at the drugstore on the way home.

Then the following week saw a neuro-opthalmologist who ordered followup CRP ESR in 2 weeks. Had biopsy confirming GCA.

18 days after diagnosis ESR=20 [barely in limit] but CRP still high at 72 which disturbed me [limit is 9mg/L]. 2 days later saw a rheumy. That evening experienced weakness in right hand, then paralysis including arm; then black spots right eye. Finally called 911 for emergency trip to Stanford stroke center. Too late for TPG since over 3 hours. Had CT scan [without contrast due to renal failure] Was diagnosed with MCA left brain ischemic stroke caused by GCA. Was then given infusion methylprednisolone 1,000mg/d for 3 days which brought ESR to 4mm/hr and CRP to <2.9mg/L. Was told by 3 MDs if I had originally chose the infusion on day of diagnosis I would probably have avoided the stroke. Updating I'm now at 5/5.5mg/d pred and ESR=10; CRPhs=0.7mg/L. Am on daily 40mg atorvastatin, 40mg aspirin, 25mg metaprolol, 50mg losartan.

[jinasc in reply to gifford7]

Are you saying you took one dose of 80mg and then nothing...........till you saw the neuro-opthalmologist a week later?

If so where you then put straight on to a high dose ie 80mg following that consultation and continued with that dose until you saw the Rheumatologist 18 days later?

[gifford7 in reply to jinasc]

The initial dose of pred was 80mg/day. I'll edit my post to clarify.

I then started on 80mg/day for about 6 weeks before tapering.

also got the 1,000mg/d for 3 days infusion on top of the 80mg/d

after the stroke. My sister had a similar experience. Woke up with most vision gone in 1 eye. After an inadvertant 24 hour delay, hospitalized and got the infusion of 1,000 mg/d

for 3 days of methylpred. Also developed PMR, and 6 years later aortitis requiring open heart surgery.

[Christophene47]

Yes, I had a vision loss incident lasting 10-12 min in left eye. I did not go to the hospital, remained calm and the vision came back like a switch had been turned on. I did go upstairs and took a some extra prednisone tablets. Had the vision loss still been there after 20m, I would have gone to the hospital. At the time, I had a positive C-ANCA . I had visits with 2 different ophthalmolgists; after quite a few tests , it was determined that I had the vision loss was due to a "haze" over the central retinal vein, and was not related to GCA , PMR, or WG; I had all diagnoses at the same time because of different opinions among doctors.

After 2+ years on Prednisone, my ANCA testing has been negative. I am not really well though, ; on a small dose of Prednisone (4mg) and just "dealing with it."

I was just very lucky about the vision. Don't follow my example. Always go the hospital.

[Blearyeyed]

Could you explain a little more.

I know from speaking to you before you were having pain and blurred vision but are you talking about a new sudden vision incident despite already being on Pred?

How long have you been on Pred and at what level?

What tests have you had and have they now confirmed the GCA?

I would say , if it is a sudden onset flare of vision loss and the doctors are recommending the infusion IV at the hospital to reduce the inflammation and then prevent permenant vision loss it is probably wise to take their advice. It is not worth waiting around when it comes to your eyesight.

[stonecreek]

1000 mg of pred.? never heard of that. Let us know how it works and best of luck. I have Glocume and Rp. Very poor vision. Just gave up driving. I am on 5 mg. for pmr. I almost think my vision got worse when I went off the preds. But not sure. what is your eye problem? It is the pits!!

[Hidden]

Yes, Blurry62. I woke up blind in one eye, not knowing ANYTHING about GCA. Called for an ambulance, BP a little high for the first time ever, but nothing else showing up. Headed to hospital ER, all blood tests good, CT scan good, ER doc knew eye was off, but not a clue as to why. Made calls all around our state to find someone who might know what was going on. Finally found an opthamalogist 1-1/2 hrs away and we met him at his local hospital. Immediately started on 300 mg IV prednisone, one dose every hour for 3 days! I immediately felt relief from my jaw pain! He guessed GCA and treated before any further tests. Thank God! I regained minimal sight and light in blind eye, sorry it wasn’t more, but thankful for some sight, lest I lose the other eye, ya know? How I felt on 300mg every hour? Fine, just fine! I wasn’t flying. I was awake more than normal, but I did sleep anytime I felt tired. I was also anxious, I think, because of the shock in waking up with a blind eye and hearing about GCA. When I left the hospital 3 days later, I just felt good. Sent home with 60mg daily dose. As time went on, I began to feel the effects of prednisone. The increased energy level was welcomed, even if I didn’t sleep enough sometimes. I think I was sick a long time and didn’t realize how bad I felt. Probably blamed fatigue and lack of energy on aging. So, have no fear... you’ve got my experience to let you know it can be a very good thing for ya. Knocks GCA down in a hurry!

[Blurry62 in reply to Hidden]

Thank you. Very much.

[Blurry62]

I don't do so well on pred these days. It's been 15 months. On 17.5 mgs., gained 35 pounds, tons of anxiety ; sometimes tears. It is taking a toll on my psychological health I do believe. I had chest pain when on 60 so was concerned/questioning how on earth I'd tolerate the infusion if ever indicated.

Thanks so much for answering.

[Hidden]

Well, gee... I’m sorry you have tons of anxiety. I can understand why 1000mgs would cause more anxiety! But the good news is that you’ll have medical staff with you while getting it (right?). Just be sure to let them know your fear so they can monitor you closely and be prepared to treat, if necessary. Knowing you have their support might help you relax through it? Wishing you the best!