Technically, it is Thursday morning. I saw the NO on Tuesday morning, armed with questions and a serious approach.
Despite the infusions and taking 60 mg per day, I was still bothered by pressure on my temples and jaw joints, as well as intermittent numbness on the left side of my face and sometimes my legs below the knees. My headaches were light, and Tylenol cured them. My vision in my right eye remains hooded, but most notable to me is that dim areas, like a room with a few nightlights, are DARK now. I feel the 'fuzzy' vision is due to the pred. Had I mentioned he had increased my Gabapentin to 1200 per day two weeks earlier? I have a blind spot for sure, but some of the peripheral may return as the swelling continues to go down.
If my vision never improved a bit...I would be thankful for what I have. I know I'll adjust, but I am serious about NOT losing anymore. Though fuzzy, I could read some of the eye chart with my distance glasses. When he shined the light in my eye, it wasn't as bright as usual, and he did not peer to the left or right, practically crawling around my nose as is customary~!! My sense was that the pupil did not react as it usually did in the past. That may change.
I asked him if I could see him more often since he had 'the window into my eye' with his knowledge and equipment and directly requested that he examine my eye more than every three months...in light of what had happened. He said he would see me every two weeks. That was a 'big ask' since I wanted him to be primary over the rheumatologist. Though he never prescribes the prednisone and confers with the rheumy....he did step back and flatly say, this never would have happened if you had remained on prednisone. You are an individual who will be prednisone-reliant to retain your sight. Big statement in the American Medical community. It just isn't worth the risk to me at almost 84...I don't need to be a zero-hero, I want to see. When I can taper down, I think 7-10 mg would keep me safe. We'll see...my symptoms will decide.
The optic nerve and disc swelling in my good eye had gone down but wasn't back to normal despite the IV therapy and the 60 mgs. So, he ordered an MRI ASAP, which I had today late afternoon. Though the optic nerve showed ischemia, he wanted to check and ensure there was no 'stroke' activity of the brain. I'd be surprised if anything else showed up.
I'm so lucky I can pop those 60 mgs in the am..... I feel normal for a bit, move to shaking leaf, and then welcome Sponge-head, coming down the mountain. I have no stomach troubles, and I am positioned in life where I need only do what I want. That's possible because my husband has been so helpful, so great. My brain gets very active with what I'm going to do tomorrow...but I haven't written or painted. I've been puttering around the house and watering flowers outside. Confession..most of my time is spent listening to books.
Whew...a long post; I know you care and all of you sure are important to me. My head is in a good place mainly because I've accepted that uncertainty is just part of the package. Accepting that and not being anxious about the 'what-ifs' had really helped me relax, knowing sight is primary and I'll won't personally be doing anything to jeopardize that. All of you make me SO DANG brave.💞💞💞
I have one question...I have never urinated so darn much in my life, never! Is that all the pred?
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Grammy80
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Pred can make you pee - if there is something to pee out!!! But so can other things - so have your reported that?
It is a logical conclusion to arrive at that there will be patients who need lifetime pred - that has been known for a long time. And even Actemra only works for half of patients, Because Actemra works for only one of the at least 3 different mechanisms that create inflammation in GCA. If YOUR GCA involves even one of the other 2 - you will need pred. Or a second and different biologic. Pred is the multi-purpose cover-all option.
Well, there is p-t-p (plenty to pee) I never fail to make a deposit. I drink a lot of water and my favorite drink is iced coffee. I know my 'cuppa' friends are saying yuk! I used to have to trick myself into drinking enough water but now I am thirsty...makes sense, fluid out-fluid in-fluid out. For the MRI, I had to have some bloodwork and my eGFR was 66~~! That is the best since pre-GCA and pred.
I think it is safe to say the Actemra is effective with my inflammaiton mechanism. Although, the original plan was to be off pred and stay on Actemra. That will not happen on my watch and that is OK~! Symptoms must rule since even with some additional loss....my ESR and SedRate are normal. Like old comfortable slippers...I trust and will stay with Prednisone mostly because of my personal circumstances. Now if I was 40? or 50 or even 60, I'm sure I might feel differently, even 70. We know our own bodies....thanks as always!!!💞
Yes, it was pretty clear the night I went to the hospital. Pre-solumedrol, my sugar was 87; post-solumedrol, it was 142. It was still holding at 142 yesterday despite infusions and 60 mg per. I'm comfortable, as is the doctor that it is a steroid-induced spike. Except for about ten gingersnaps a day, I try to stay away from anything white and don't use sugar in coffee, tea, or on my porridge (I'm becoming British).
But I cannot touch ice cream because I inhale the total container like a junkie!!!💞
Agree with PMRpro [cannot say Pred affected my urinating even on high dose] - was it an issue for you previously on high doses. If not could well be something else- and best to get it checked,
My ophthalmologist told me right at the beginning there was a possibility of being on Pred for life… fortunately it wasn’t the case. But, like you, had it been necessary, I wouldn’t have been unduly bothered.. you have to do, what you have to do. As you rightly say, and as you know your GCA is the master [or mistress] in all of this.
With you on the audio books etc… mire technology to be thankful for,
Back in 2019...even for a few years....those times are pretty fuzzy. 😉I just remembered I would sit in a stupor and type on my IPad as I searched for information....and found HU~! I should resurrect those old docs out of curiosity and see what writing on 125mgs looks like.
I've experience incontinence for about 20 years...but this is ridiculous. I've been on 20mg of Lasix twice a week for a few years, but took that out of the pill box!!!
Audibles used to put me to sleep, but now I'm listening to so many...what a gift they are. Technology in communications is a blessing indeed.....here I am in corn country USA and kept it together with the help of all of you across the pond. I thank you for so much💞+ Zoom!
Well, down to 4.5 mg. GI system is not too good, lost about 9 lbs, cataracts got bad quickly and I'm having them removed starting in OCT. Also had inguinal hernia surgery in FEB and I'm still struggling with discomfort because of it. But none of these things keep me quiet too long so I'm not complaining. Only sharing because you asked.
Getting old comes with "friends " that simply will not leave!!
Then again, I'm "preaching to the choir" aren't I!
You speak many truths!!! I'm happy to hear you will be having your cataracts done...but you didn't need that hernia. Thanks for sharing with me, I wonder. Yes, aging comes with some things we are better off embracing than fighting...and then there is the other stuff we would 'kick to the curb' if we could! You can 'take me to church anytime!!'💞
Thank you for updating. I love your expression "zero-hero." You're quite right. Age and life expectancy are items that doctors must take into account when dealing with those of us who are of a certain age. Any downsides of pred are bound to be outweighed by the benefits at our time of life. I'm glad to be off pred although I wouldn't consider it a failure if I had to start again. And in response to your little addendum, I'm sleeping through the night almost all the time now, although for many years (actually since the time of waking up with babies and young children) I would wake up at 4 am for a bathroom trip. This exactly correlates with no pred, although I cannot say pred had anything to do with starting the habit!
Thank you for the update, reassuring that your eye guy will see you every 2 weeks. I am inspired by your approach and the acceptance of your situation, I've struggled with that, still am if I'm honest with myself. Also anxious about my eye which has necessitated 60 mgs of pred which has caused many problems, not least this feeling of needing to pee even when I don't! I treated it as a UTI with cranberry juice and cistopurin but as I am reducing the pred the symptoms are subsiding so have decided it is the pred, although agree, get it checked if it persists? What a journey with this disease you have had, thank you for sharing it with us. x
Yes, pred is a double-edged sword for sure! I was glad to hear that about peeing...thanks forum!....I don't recall this from five years ago..? I should buy stock in Depends! The journey shows that support is always right here and any burden lightens when it is shared~!💞
Morning dear Grammy,what a hell of a lot you are going through and SO brave and dignified with it all.You put most of us to shame!I tend to spend time worrying ,every little bit of head pain puts me in a spin and wondering what it is.Must be lovely to be a half glass full person rather than a half empty like me.Oh for your positivity,can you send me some please.?You are the Bodacea of this forum,a true warrior, and you will win this battle.Oh,and regarding the constant peeing,you have joined the elite club of Urinaters United, Never spent so much time on the toilet!Keep on trucking gal,xxx👍❤️👍💐💐💐💐😜😜👏🏼
Firstly, I was so impressed with your story update… as someone else said, so brave, un-selfpitying and sanguine. I do hope everything stabilises and gradually improves.
On the subject of peeing … my first foray onto this site, 4 years ago, was to ask if anyone else had experienced the flooding that attacked me two weeks after beginning Pred (60mgs after coming out of hospital).. people said yes, they peed more, but this wasn’t what I experienced, and still do… this is flooding that has no connection to feeling one needs to pee…that’s separate. It’s a leakage that seems to have an independent life. I was firstly told that it was what happened when you get old ( I was then 72); that no one had ever made any connection between urine leakage and Pred; and that I possibly had bladder/pelvic floor problems. Well, since then I have had gynaecology tests which show strong pelvic floor, and no bladder problems. All healthy in that area. And, sure enough as the Pred has reduced gradually, the leakage diminishes… pad usage reduces from three a day to 1-2 a day. When I had a flare up, and went back to 40mgs from 2mgs, it all increased again. I’m giving all this tiresome detail to illustrate what can happen., and in my experience this is nothing to do with the GCA but undoubtedly with the Pred. There’s a direct correlation, and I’d love to be a Guinea pig if there was any research into this, but I’m told there isn’t. Meanwhile,I could probably have bought shares in Tena.
I couldn't have said it better.....where does it all come from. I don't even have the urge and yet.....as long as I sit...I'm in production!!!! Apparently, I just have no memory of this Niagra like experience.😂😅 You DID buy shares in Tena!!💞
Hi Grammy80! Always lovely to hear from you. I'd not made the connection between pred and frequent peeing so it's reassuring that others are experiencing this. All the very best, brave and inspirational soul!
You are so articulate ,brave and obviously committed to being the best version of yourself at 84. You have inspired me at 76 With PMR and dormant ( hopefully) GCA.Soldier on !!
Awesome, Darcy, .....Awesome~!! The forum army marches 👩🏻👵🏻👩🏻🦱👨🏻🦰👨🏻🦲👱🏻♀️🧒🏻When I first came on the forum...I used to do emoji people to reflect how supported I was...and am.💞
Well that is very interesting, especially the part of having to stay on prednisone. EVeryone seems to be wanting off it as soon as possibe as well as everyone I mean the medical profession also. I was on for 4 years off two years and have now relapsed and back on 50 mg prednisone that had to be bumped up to 60 to get rid of headaches. WAiting for my Actemera prescription to start. This is all just a week old so am adjusting to the high doses. I am 82. Also have osteoporosis due to the prednisone. I love youtr attitude. Feeling more like that myself.The first time I just wanted off but now I am concentrating on living the best that I can because at this age I can't put off living my life until I'm in remission or whatever comes next. Now it is just about today and how I can life the best day. I. too have found a great joy in both ebooks adn audio books. So happy you are in a good spot. Take care. Wonderful to have this avenue to share.😍
You don't sound 'confused2' to me~!!! When you think about the fact that some folks have to stay on pred, it just makes sense. Often on the forum, some will say "the lowest effective dose"....that is a realistic bar. Over the years, I've had two docs obsessed with getting to zero...but that was all about them......not me. Take our joy when and where we can, use our energy when and where we choose....You are so right; I can't put off living my life until I'm in remission !!!
I've been taking Actemra weekly since 2019, and I believe it has had a positive effect; I'll continue. How does it work in Canada? Can you get it as long as it is prescribed, or is it limited? A huge piece of my heart is in Canada🍁 💞
Deb, So many shored me up in 2019 and I learned there could be an end or at best coping mechanisms that kept us lifted and hopeful. This continues still. It is my joy to attempt to give back a bit. xo 💞
I just found this post from a month ago and was blown away by the acceptance and sheer lack of self pity conveyed. I applaud your attitude Grammy, it puts me to shame. My mother had health anxiety and was always dragging me to the doctor's as a child. Consequently I followed in her footsteps and have health anxiety. I do try, but it's an entrenched learned behaviour.
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Update on setback. 
GCA sight loss experiences?
