Diagnosed with GCA 11 days ago, on prednisolone 75 mugs daily. Still feel awful. Had my routine annual eye test yesterday, have it annually as family history of glaucoma.
For the first time ever my inter ocular pressures were very high, now have an urgent appointment with an ophthalmologist on Thursday. Apparently prednisolone can do this, anyone else have this experience?
GCA can cause damage to your eyes so an appointment is vital to make sure everything is ok!
I haven’t heard that steroids can cause damage, if anything the steroids protect your sight!
I was diagnosed with GCA and PMR last November
Hi Joan. So sorry to hear your story. I too, haf heard that prednisone protects your eyes so I'm a bit confused on that one. I'd be more inclined to think it's the GCA that's doing the damage. But I'm glad you're getting it checked out this week! Please keep us posted as to how you're doin'! Take care and sending you positive thoughts!
Thankfully it’s not the GCA, The GCA causes damage to the optic nerve through pressure on the temporal artery fortunately and because it was picked up early that is OK. Although my temporal and parietal arteries have some blockages.
Prednisolone apparently can cause increased intra occular pressure especially to those with a family history of glaucoma which I have, (late mum and brother).
Field of vision decreases but if treated early and continues should be OK, just another complication to these conditions.
At the moment I wish I could be put in an indduced coma and treated until it was controlled, I am fed up of being so,wretched!
Yes - I know a few people who have raised occular pressures as a result of chronic pred treatment for GCA. I only learned recently that this can happen very quickly in some people on very high doses. How high was it? They treat it in the same way as without pred - drops to reduce the pressure - and for most people that is successful. It leaves someone like you between the devil and the deep blue sea doesn't it - pred to prevent visual loss from GCA and glaucoma as a result.
If it is not controllable with drops and you must reduce the pred you could ask about the possibility of you being put onto Actemra to reduce the pred dose more quickly. I'm sure a case like this would come under the criteria - pred side effects that affect another aspect of the patient's health should do.
Do tell us how you get on.
On 75 mgs pred daily and still have head pain but I think it is decreasing. I see my rheumatologist next Tuesday, I guess he will do,another Doppler ultrasound to assess the blockages before he will reduce the pred. My PMR symptoms have actually felt worse the last 2 days but maybe that is because the head pain is less and I am noticing them more.
Hi Eileen What is Actemra for ? Does it replace Prednisone or have the same side affect as it since I don't eat much at all and gained 30 lbs.& am unrecognizable since I was thin my entire life. I also would like to know it you needed a temporal artery biopsy in order to confirm GCA. I am sure I have that too since my C Reactive Protein was off the charts at 50 to 90 to 94.6 where it sat for 3 1/2 months untreated since the 1st 3 doctors had no idea what I had but when I finally when to my rheumatologist he diagnosed me but with a CPR of 94.6 which is off the charts I am sure I had major damage to my blood vessels being left untreated that long .
Hi Tinapoly,
Actemra is to help with reducing and eventually getting off prednisone. Maybe just being on a low dose in some cases.
I have been getting Actemra infusions for appx. 7 months.
My inflammation number is now at zero and has been for some time.
My doctor said he doesn't know yet how long he wants me to remain on the infusion. He's just so pleased with the results.
I suppose like the prednisone it can be a long time as long as you have good results.
My prednisone has gone from 20 mg. to 15mg, to 10 mg. & last week to 7.5mg. These numbers are since I've been on Actemra.
My doctor is very careful about how he reduces the prednisone.
There is also a self-injection of Actemra. I just opted for the infusion since Medicare covers it.
I have GCA/PMR and Sjogren's as well as Occipital Neuropathy.
I get nerve blocks every week for the occipital neuropathy.
This is also related to the GCA which causes severe headaches.
I just got a double whammy on those headaches.
My biopsy for GCA was negative (as most are) but my doctor said I have ALL the classic symptoms. He continued with the prednisone that the hospital had put me on but lowered the dosage. I was on 60 mg. from the hospital. My rheumatologist reduced it to 40, then 20, then 15, back to 20, then 15, then 10, & last week to 7.5 mg.
I gained 20 lbs. and my face was so big & round when I would look down all I could see was my cheek.
It has been a long & painful 13 months and still is.
In short (of this long story) I'm very pleased with the Actemra.
Sorry to have been so long winded but I wanted to cover as much as I could.
What exactly is Actemra?
My ocular pressure went quite high, not quite high enough for drops but high enough that my ophthalmologist wanted to see me within months, not a year or more. Fortunately as my dosage dropped so did the eye pressure. But I still have to go see him annually instead of every two years as long as I'm on pred.
It happened to me at 15 mg. I was, in fact, much lower before I saw the eye doctor and I've since learned my eye pressure was high enough that some doctors would have prescribed drops.
Same question...what is actemra? Never heard of it! I'd really like off of prednisone as I too have gained about 12lbs in a very short time! And my face is getting round by the day! However, the prednisone Does make the pain tolerable.
Increased ocular pressure has nothing to do with GCA, or PMR for that matter. It's a definite although not very common side effect of prednisone.
For the first time ever, near the beginning of PMR diagnosis when I was on about 15mgs, I had a routine eye appointment and was told the pressure was raised. They reran the test and it was fine. I think the Pred raised the pressure but I haven't had a problem since then.
You shouldn't have any PMR symptoms on that sort of dose - 20mg should be plenty. But for some people pred can cause joint and muscle pain - damned if you do, damned if you don't. A doppler ultrasound is only any use for the temporal artery and maybe the brachial. There can be problem in cranial arteries - and you can't visualise them.
Cut the carbs and salt - it REALLY does help,
Actemra is a biologic drug - with potentially some very risky side effects. It reduces the amount of pred required and may even allow patients to get off it. However - it is not officially approved for PMR, just GCa, which means it is off-label use and if anything goes wrong you have no comeback.
It is extremely expensive - some $14K per year. There are schemes to help pay in the USA, not anywhere else.
Hi everyone! I finally saw my new Rheumy today, ( you know, the one who's taking my pregnant doc's place, the pregnancy I knew Nothing about!). Well, the saying goes everything happens for a reason, (tho' I struggle w/that at times!) and I think I may have lucked out! This doc is SO engaged, so caring. She couldn't stop shaking her head at my "rollercoaster" experience thus far!! Said I'd not been being followed correctly and is basically going 2 start from scratch. For the next 3 weeks I'm on 16.5mg of pred. Then I'll go to 15mg 4 10 days, then 12.5mg for 10 days till I see her again. She's also ordered a bone density test (doesn't understand why that wasn't done in 1st place), and also more blood work! She was very glad I had an appt. set up w/ a Neuro-optham. cuz of my double vision! I guess what I'm goin on and on about is I feel I just may have "walked backwards" into the right fit!! Now, on a real "Bummer" of a note, I've....gained....13lbs in 2 weeks! Ughhh! And so we begin!!😢😭
This one sounds as if her mind is on her job - which the other didn't. All the best