GCA and what I learned today.....

[Grammy80]

First, I feel the hugs from around the world. xo I also learned that this wonderful forum is a safe place to unload my fears and experience what it was like to be 'really heard' and understood.

My husband was talking to me about my upcoming visit to the rheumatologist on Monday and how I must explain to him that I must taper because 'I'm not steady and will fall.' He means well, and I listen, but unlike all of you, he just doesn't understand and thinks I should be on 20mg. Sight loss is not something he even thinks of....he can't help it.

I woke at noon today and learned that, though I had to today, it is not the time to take my morning meds. At noon each day, I was late, I also take Gabapentin and Primidone. The neuro-opthalamogist was the one who prescribed it two years ago, and much of my sight returned to my right eye, which improved my visual field. I believe the target was my optic neuritis and neuralgia. Now the only pain I have is in my blind eye...it is strange. My forehead hurts over my eyebrow; then, the pain goes through the eyeball and into my nose, then numbness. He explained that many nerves around the eye become irritated, not inflamed by GCA. I expect they are angry. Somedays, it is frequent and other days 3-4, not bad.

About an hour and a half after taking my meds, I crashed. I was so tired, and then everything was blurry, so I knew it was the prednisone. I gave up, crawled into bed at two, and slept until 4. When I got up, I made a caffeine-loaded iced coffee. I could feel my head graduate from kindergarten to Grade 3. Then...I came to the forum.

When I looked at the alerts...my eyes teared up....I have always hated to sound like a complainer, and so many of you welcomed my post ...so you could communicate with me. What a compassionate bunch you are...xoxo

Many of you mentioned getting to the Senior Center to paint. Transportation is not a problem, but I'm unsteady, wobbly, and shaky and can't see clearly anyway. I think about the things I love to do but somehow don't get there to do them. I'm about as whipped as a puppet without her strings.

I don't know. What do you think? I feel the infusions and the high doses are affecting me more because I'm a few days from 84. Do you think the impact would be more significant because of my age?

The alarm will be set tomorrow, and I will start my day and pills earlier. It is time to kick some butt or at least try.

My heart is so full, my friends. I'm grateful for every one of you. 💞🫂💞🫂💞🫂

[piglette]

Your body is telling you what to do. Rest, rest, rest. If you would like to see some lovely photos, you can always join the PMR/GCA Gardening Group. facebook.com/groups/6288051...

[Grammy80 in reply to piglette]

Made me smile...I've been listening to books but will later see the groups flowers. Thanks pitlette.💞

[DorsetLady PMRGCAuk volunteer]

Agree with piglette , think you body is saying, no shouting rest - both the the high doses of Pred and the medical and physical stress you have been/are going through is taking it’s toll.

Follow the natural kingdom… when an animal is out of sorts, it sleeps… doesn’t have to be told to do so, it just knows….💤 😊

[Grammy80 in reply to DorsetLady]

Do you have a cat? I do and you are wise....as is my Gus.....I will go to bed more...I rest, but usually in a recliner. In bed I always manage sleep when I crawl in.....so there is the answer😴💤💤💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Not now, did when youngster and when the kids were younger and hubby was no longer in Armed Forces and we weren’t moving about all over the place . Had a couple of dogs as well, lost last one when hubby was quite ill, and decided not to get another.

Both my children have dogs so I get my full of doggies love when I visit…

Country girl so used to animals… wild and domesticated.

[Grammy80 in reply to DorsetLady]

😂😃...and you? Wild or domesticated?

I would guess lots of fun and class.💃🏼🌸 💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Do you really need to ask after so long….😳

[Grammy80 in reply to DorsetLady]

No!!....and I don't even need a fertile imagination...I see it all in your profile pic.(and I hear you laughing) xo💞

[suzy1959]

🌷🌹🪻❤️

[Koalajane]

dear Grammy I hope you feel better soon, but like the others say you really must do what your body is telling you to do and rest. I hope your next appointment goes well and that very soon you start to feel steadier and more in control.

Continue to keep us updated please x

[Grammy80 in reply to Koalajane]

I got up at 4:30 and took the pred and all other morning meds. Back to bed and woke at nine. I think this may work well and avoid the 'hit' of the pred. I'm grateful because at the beginning, after the infusions + 60mg, I pulled a few 'all-nighters' and wasn't fatigued. I think I'm on to something.

My appointment is at 10 am CST Monday and I sure won't feel like I'm going into it alone....and while I'm listening, I know I can talk to all of you. I feel bad for my OH, with dementia, he is scared and says "I remember you on 20mg, so how could that hurt you?" He never comes in the office and that is a good thing for both of us. x💞

[Koalajane in reply to Grammy80]

Glad you have found a way of coping. Let us know how the appointment goes please. X

[sidra1968 in reply to Grammy80]

That seems like a good idea, taking the meds and then going back to sleep. Good luck at the appt today!

[PMRpro Ambassador in reply to sidra1968]

It is what we used to suggest if mornings were a problem - take the pills early and snuggle down for another couple of hours by which time they would be working. It also helps if you get the wobbles, especially if you can't take the pred before bed without it keeping you awake.

[Grammy80 in reply to PMRpro]

It sure has helped PMRpro~! Nights are unpredictable...sometimes I'm tired and some times my eyelids simply refuse to shut. I'm sure when winter comes, crawling back into bed will feel even better.x💞

[Grammy80 in reply to sidra1968]

Thanks so much sidra1968 , I posted a bit ago. Crawling back into bed feels awesome.💞

[PMRpro Ambassador]

You have a flare of a serious systemic illness and you are on a hefty dose of pred to reduce the risk of vision loss. The two together are pretty toxic and you are trying to fight against that and that requires a lot of energy too that you haven't got.

Your body knows what it needs - if you had proper, good going influenza, you would be in a similar situation. Would you be as suprised then? And you aren't 60 any more ...

[Miacaro45 in reply to PMRpro]

The bottom line is one must take care of themselves first. Once done, everything else will fall into place.

[Grammy80]

My age is out~! Despite my moonface and pred facelift which has stretched me shiny with just eye wrinkles!!

You are right, there are no spoons in my pocket at the moment. I don't know why I fight🥴 but don't usually win anyway; I'll be more accepting. Thanks xx💞

[Hidden]

Hello, thank you for sharing. This is very timely for me as I have given myself a flare/relapse after adopting a 'swallow the tablets and carry on' approach. We are going on holiday later this week with all the preparation that brings. I was only diagnosed 6 weeks ago and it is still all new and I am grateful for any input. I am due a GP review when I get back. Thank you for your wisdom on acceptance.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Welcome,

Have a look at this -

healthunlocked.com/pmrgcauk...

and when you get back maybe fill in your profile so we know a bit more about you.

Plenty of info in the FAQs as well - when you open a post there is feature banner just under post and above replies

[Grammy80 in reply to Hidden]

I'm so glad you're here!! This forum is a wealth of kindness, support, and knowledge, and it empowers every member to be a better-educated patient. Welcome; you're in the right place.

I loved your post because I'm happy that you are going on holiday. I'm sure you are busy now, but when you get home tell us your story by writing your biography. I wondered how much pred you were on and what led to your diagnosis. The folks on here are remarkable, the more they know, the more they can help.

I've never changed my dosage for surgery, trips etc. My personal experience is that it worked for me. Acceptance is a great tool in developing and maintaining a positive attitude. Even when it is rough...know it will smooth out. I'm still learning ....it sounds like you have to allow yourself some downtime..rest your body, and listen to it keenly.

The 'suck it up' or 'fight on' approach doesn't work with GCA. I still POP THE PRED each morning, but I cater to myself throughout the day. For me there was no more days with two appointments....really two of anything~! You will have some surges of energy throughout the day, so do something. GCA is our eyes, but it has a total body effect.

Be kind to yourself and make packing as simple as possible....the destination is most important. Glad you are here and you will be too. Come back after your holiday. There is so much support and knowledge here. Have fun!!💞

[PMRpro Ambassador in reply to Hidden]

Hi and welcome!

Even travelling in stages at home can be tiring - so don't feel pressured to join in with others when you don't feel up to it. Sit to one side in a comfy place and watch - let others come to you but when you feel you have had enough, say so. Get your feet up when sitting, lie on the bed when you can. Even enjoyable things on holiday are tiring when you have PMR/GCA so don't overestimate what you can manage.

But enjoy - where are you off to?

[Hidden in reply to PMRpro]

We are renting a bungalow on the Isle of Wight. Just hubby and me. We have stayed there before 🙂

[PMRpro Ambassador in reply to Hidden]

Enjoy - and don't pack in a lot of sight seeing though I'm sure you have already seen them. Hopefully will have lots of warmth and sun . I spent 2 months in Scotland with my daughter to escape the mega-heat here in July and August and it was downright cool! Now I'm home - and like 7 and 12 years ago on this date it SNOWED down to 1200m on Friday! Thought I'd be coming home for some autumn warmth as usual

[Hidden in reply to PMRpro]

Thank you 🙂

[Hidden]

Thank you for your kindness, your welcome made me 🥹I wrote a bit in my profile but will add more another day. Screen time has to be limited or I go 🥴 but I have only been diagnosed 6 weeks.

We aren't going abroad, so travelling will be done in stages 🚗

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Good… and even though you aren’t abroad, you will still be out of your normal routine, and not in your own bed [which sometimes makes a big difference] so don’t forget to add in time for rest… and just watch the tapering, not sure what GP has said about that, but I never attempted that just before holiday or whilst away.

Watching the world go by and savouring a cuppa in a different area can be good!😊.

[Hidden in reply to DorsetLady]

Thank you, GP advised to stay on current dose of 13.5mg until my review when we get home.

[PMRpro Ambassador in reply to Hidden]

Someone with a bit of sense then,

[Saintmalo]

Hi Grammy80- I’m a mere baby - only 76!

I totally concur and can relate to all you say. I use this “family” on a daily basis & get so much “support” I have a meeting at the doctors on Thursday - PLEASE don’t disappoint this time. Fingers crossed!! “New” doctor - so hopeful!!

[Grammy80 in reply to Saintmalo]

You sure are a young one! I swear, this forum always has that bit of support we need. I wish you all the best on Thursday and please let us know. All the best💞

[Poshdog]

😴😴I read all the posts before I get up in the morning. They start my day on the right note - so many friends all rooting for each other. Wonderful. Mother is 102 and just broken a pelvic bone. She has a walker and commode but she is unstoppable, still gardening and swearing beautifully at the injustice of it all! When they made her, they broke the mould. I think the same goes for you, you are a one off - inspirational - ❤️❤️

[Andos16]

Hi Grammy80Was so sorry to read your post. I found Pred at 4am (with a milk doused Weetabix next to my bed) helped if taken at 4am.

And I have a Dr diary, where I write down what I want to say to the doctor and the important points. Very interesting to look back after a year I found.

Everyone on this forum can sympathize as we are all in pain. I am 69, told I had polymyalgia in April 2023 but have been re-diagnosed with inflammatory arthritis! First rheumatologist was brusque and didn't listen. Fortunately have now found a good rheumie. Xx

[Grammy80]

So glad you have a good rheumy now...you have to be able to converse with these doctors. That is one of the best tools, other than the support, that I have gotten from the forum; our symptoms matter!

The day does have a bit more control it seems by taking the meds early. I'll bet looking back on the diary is fascinating....and really informative!! My best to you 💞

[Andos16 in reply to Grammy80]

yes this forum is the best. Technically I no longer have pmr but I still like to check in!,

[Grammy80 in reply to Andos16]

It is wonderful that you do because you can be such a source of encouragement to people.💞