GCA rheumatologist visit today.....60mg it is~!

[Grammy80]

I'm just getting to the computer at 5:30 PM CST.

After reviewing the information from the neuro-ophthalmologist, the rheumatologist said I would have to stay at 60 mg per day; he'll see me in a month. He said, ''we" have decided this is the best approach to ensure we do all we can to maintain your vision. I had mentioned that the neuro inferred as much but didn't usually recommend dosage when it comes to pred. The neuro is in a better position, I would definitely agree to evaluate the health of my eye. My rheumy said that sometimes these diseases 'go sideways' and though we like a neat cure, the disease has the upper hand. So, sixty for at least another month, and then he said any tapering would be on the recommendation of the neuro-opthalmologist. It will be very slow, check results, and so on. I'll see the neuro every three weeks for a while.

As you know, I was anxious before the visit and honestly felt relief at staying on the sixty; I'd been torn but would have been scared if he suggested I drop 5-10, I know. As I look at my computer screen, it is like someone has put Vaseline on my glasses. The ramifications of me losing my sight completely, with hubby and all, are too overwhelming; it would be for anyone. I feel it is the right thing; my vision seems more tunneled and closets are black inside, and dimly lit rooms are also very dark. The nerve pain around my blind eye isn't that bad and certainly tolerable. There is one pain up the back of my head that I can't say the same about. Get this statistic...he is a very busy rheumy and only has 5 GCA patients, all of whom came to him with blindness after not being diagnosed.

Getting up at 4 AM to take the prednisone improves the day. It is so obvious that I feel fewer side effects when I am still or resting. The harder I try to focus on doing something---the more of a mess I become, and I know many of you truly get that image. KA-RAZY~!!

This is weird????...but I do love making the beds??? An unexpected side effect? Love to all. xxx💞💞💞

[SheffieldJane]

It’s very late in the U.K. right now. I have read your post and think you are the bravest lady I have ever met. Take great care, sending love and prayers for now.💖

[Grammy80 in reply to SheffieldJane]

I can tell there are a few of you late birds there.....time to sleep, Jane and thanks so much. I got both the gifts💞 All of you give me so much strength.💞💤💤💤💤💤

[HeronNS]

It's good that you've been able to relax a bit, to accept that is is what it is, and thankfully no one is about to force actions that would harm your vision. As my husband has his own (not GCA) struggles with preserving now limited vision I can relate in a small degree to the difficulties which have come your way. Glad that you have a medical team which is treating this seriously. Best wishes.

🍀

[Grammy80 in reply to HeronNS]

Thanks, I feel very fortunate especially to have a neuro-ophthalmologist so close to me, I think there are only two in Indiana. My only other option would have been Chicago, Illinois. The irony of my being sent to him...one visit my ophthalmologist said, Marilyn, I am ONLY and ophthalmologist....you need a neuro........ with GCA. They aren't a common animal.💞

[Nextoneplease]

Dear Grammy

Thank you for this update 😊

My goodness but you are one brave, loving and caring woman. I admire your positivity so much, and your honesty, especially when things are hard.

This sounds like as good an outcome as possible from your review, and I’m so glad that you have medics who are taking your case seriously.

Sending you hugs and positive vibes. Love, Nextoneplease xx

[Grammy80 in reply to Nextoneplease]

Thank you so much for all the positive vibes you send. I struggle when I get overwhelmed or down...I think I feel guilty. Given everything, I've felt fortunate....only I wasn't feeling that way last week and am so thankful to everyone who 'gave me the green light' and so many hugs. I wouldn't ever want to be without all of you. xo💞

PS...I could tell by my inner relief...I agree, best possible outcome.

[montebello]

What an incredible ride you've been on, and are currently on! Thank you for sharing. I hope you are able to sleep.

[Grammy80 in reply to montebello]

I think I will...I thought appointment was 10, it was 11 and the Doctor came in at 12:15PM~! My OH loves a particular Chinese Buffet in the same community, we ate and I had three, yes three dishes of Hershey's Moose Tracks Ice Cream. I'm tired from just carrying me around. It was 90 degrees F and we arrived home at 3:45 PM.....so thank you so much....Zzzzzzzz💞

[PMR2011 in reply to Grammy80]

A dish (or 3!) of Moosetracks helps everything! Glad your medical team has got your back where sight is concerned. Sending warm thoughts your way.

[Grammy80 in reply to montebello]

I'm so thankful....I feel like I could be up 24/7, eyes wide open....but when I crawl into bed...I sleep. So, I'm not paying attention to the clock and letting it dictate....it is better. Last night I listened to a book until 2:30 AM, took my morning pills and slept until 10 AM. I appreciate how lucky I am to be able to do that too. My best💞

[potterylady]

Omg, 60mg is so rough. I hope you can reduce soon. You are a gracious, loving soul. Bless you Grammy.

[Grammy80 in reply to potterylady]

💞

[DorsetLady PMRGCAuk volunteer]

Hi,

Your man sounds as if he’s a good un! And fully aware of the consequences, so glad you’ve got him at your back.

As for being at 60mg, hopefully it won’t be as bad as you think, I was at that dose for 8 weeks after the initial 80mg [2 weeks]. As you well know, we need what we need… best wishes my friend..🌸

[Grammy80 in reply to DorsetLady]

We need what we need and I'm grateful it is there. For all the side effects prednisone may have, I'm thankful I'm taking it~! You are such an encouragement to so many. My rheumy told me he had so few cases and though the first thought is taper, taper....GCA calls all the shots and mentioned all who came to him had sight loss. That was how they were diagnosed. I asked him what he thought could be done about that; seminars. awareness in med schools, what? He said, "I have a lot of strong feelings and opinions and am involved in trying to do something about it. It is a shame; it is rare enough that GPs don't pick up on it." 💞

He seemed really sad....

[powerwalk]

We're here with you Grammy. You are being monitored well which im sure is a big help to you. Love and hugs xxxx

[Pixix]

Sending hugs, you are a very brave lady, but even you must need a hug, or two, or two million! Take care, S xx

[Grammy80 in reply to Pixix]

I feel them, I felt lost last night when I couldn't open the site...so happy to back among all of you.💞

[Pixix in reply to Grammy80]

That’s great, I hope you don’t get lost again! S x

[Pollyanna16]

Wow I really admire your outlook & positivity. My very best wishes & keep us informed xx

[Koalajane]

Grammy I am so pleased that you have a good man to look after you.

It is good that he is keeping you on 60mg and taking them early is working. Stay strong and keep making those beds!

Please keep us updated as we will all be thinking of you I am sure x

[Grammy80 in reply to Koalajane]

Thanks Koalajane, for everything you offer. Now in our 80s, we have separate bedrooms, that gives me two beds....perfect, just enough💞

[Telian]

Wishing you all the best Grammy. You truly are inspirational. Sending love and hugs. 🌺

[PMRpro Ambassador]

Was that an acceptable birthday present? Birthday hugs in case it wasn't - and a few more anyway.

[Grammy80 in reply to PMRpro]

Oh, PMRpro...got the hugs and as anxious as I was; I knew the relief I felt when he said 60mg. I felt such relief inside me. Plus..the neuro will be dictating the pred. When he sent me for the infusions, I knew he wasn't happy that I was only on 5mg and I knew the visual field exam showed sight loss. Happy Birthday to me!!!💞

[Zebedee44]

Now that you have that reassurance from the specialists it is time for you to get into your carefully made bed and SLEEP so that your beleaguered body and brain can recover. Lots of love, Chrissie 💕

[Grammy80 in reply to Zebedee44]

OK...if you insist...💞

[Tiggy70]

Stay positive Grammy. You are one amazing lady!!! “This too shall pass”xx🌸🌸

[Fatsiajaponica]

I'm relieved for you and also in awe about the bed making, it is my worst job as it wears me out, however, satisfying when it is done. Hope you are still sleeping and restoring your batteries. It is gratifying that you have a good team behind you, send them our best wishes! Thank you for keeping us up to date, sending you hugs💐❤️

[Grammy80 in reply to Fatsiajaponica]

I found myself SO relieved, I was conflicted about tapering but sight wins. Also, I feel safe knowing that rheumy is taking his direction on Prednisone from what the neuro sees when he examines. That is a big shift and comforting. 💞

[Grammy80 in reply to Fatsiajaponica]

Confession: I have a cleaning lady who changes the linen....I'm just talking about pulling the blanket up and returning the shams...but it makes me feel like a big deal.🤣😂💞

[Fatsiajaponica in reply to Grammy80]

😂😂

[Moaningxcat]

Thanks for the update, Grammy. It sounds like you have a good neuro-ophthalmologist. I hope you continue to care for yourself. Because of you, I just donated and became a member of PMRAuk! Thank you for letting us know about this. Sending positive thoughts your way🌞🍁🌻

[Grammy80 in reply to Moaningxcat]

That is great...maybe I'll see you at a meeting, I'm so fortunate having the neuro-opthalmologist!! They are rare. I'm happy that my rheumy is now taking his cues from him; he can see in, around and behind my eye...he knows what shape I'm in; a comfort!💞

[reefswimmer]

If you need to take a high dose, then just go with it and don't worry. I have been on a tapering dose for the past nine months and it has worked out well. You will know if you can cope with the lower dose as you start to reduce it, but if you can't, I'm sure your specialists will keep you on the higher dose until you are ready. The pain in my hands was not noticeably improving when I started to reduce my dose, but it did not get any worse either and then about a week ago, I finally realised that I had got up and had a bath, without even thinking about my hands and wrists. They had stopped hurting. So now I am taking a third of what I was taking in January. I hope it works out the same for you. Nothing weird about liking making beds. I do too, but haven't been able to do it without help for months. I like polishing silver and finally I can do that again too! Very best of luck.

[Grammy80]

That is great about you hopping..getting...out of bed, later realizing you had no pain. Super. Yes, thanks to all of you, I'm in a better frame of mind and will just go with the program. So glad your taper is working. Now..polish your silver~!!💞