I think I have PMR and I’m terrified

@stonewheel Is there any chance this could be from vitreous detachment? I had that happen about 15 years or so ago. The vitreous wasn't detaching cleanly and was tugging on my retina. I was seeing flashes of light when I turned my head in either direction. I went to the ophthalmologist, and she sent me immediately to a retina specialist for emergency treatment. He used a laser to burn and scar the back of my eye around where the retina was starting to tear. That was unpleasant, but I haven't had any problems since then, other than the GCA problems in the same eye.

@stonewheel

I'm glad you will see an ophthalmologist soon. Light flashes and floaters mean the clear jelly (vitreous) inside your eye is pulling on your retina. This pulling can cause a retinal tear or a detachment. Floaters aren't quite so serious as long as they don't multiply. Solid dark floaters are different from clear ones. The dark spot is a shadow being cast on your retina. An occasional dark floater might not be too serious unless they happen frequently or start to multiply.

Floaters can be all shapes and sizes. After prednisone started working for my uveitis flares there were all kinds of cell fragments and stringy cobweb-like things. You probably don't have uveitis unless your eye is very red and inflamed.

There are various types of uveitis and it isn't always an autoimmune condition. Your can have uveitis caused by an infection or some kind of eye trauma. Autoimmune uveitis is often associated with inflammatory arthritis and in my case reactive arthritis.
https://www.westtexaseye.com/blog/eye-floaters-and-flashes/

@jeff97 Yes. That is why I went to the retina specialist two weeks ago.
She gave me literature explaining what may be happening. The vitreous may be doing something (pull, wrinkle,tear…)

She said that the gel can condensate (turn to liquid) at our age and that can cause a pull on the vitreous. Sometimes the pull can cause a wrinkle and thus wrinkle vision, or it can tear and then liquid gets behind it and the vitreous can peel off like wallpaper (that can cause blindness).

She looked thoroughly (IMO)
in both eyes and said that she saw nothing, no wrinkle or tear, or GCA. Then said come back in 2 weeks and that she’ll look again. That will be tomorrow.

I did read about the laser procedure. Glad to hear it works!

Thank you.

Thank you. Good link too.
I went to the specialist two weeks ago. She dialated and poked and peered into both eyes and saw no wrinkle, tear, or GCA.
She told me to come back in 2 weeks and that is tomorrow.

My eyes are not red or sore. Just unusual (larger that normal) floaters during the day and, new to me, brief flashes. But only in the right corner of my right eye. No cobwebs or fog or speckles. No curtain.

With the PMR, the medications, medications for the side-effects from the medications etc.,
I thought it prudent to see a specialist.

I told my wife that I had another “P” starting acronym.
PVD, to go with my PMR and my PMA.

Hi @martyn, I feel a real parallel with your situation. I was 48 when PMR came out of nowhere for me a couple of years ago and I was also terrified at the time given that I was really into cycling along with hiking and I had no clue what went wrong. Let me say you have every right to be having such strong feelings about this so don't apologize for that.

I was put on prednisone right away which relieved the pain, but like so many of us here didn't want to be on it long-term. You asked about going med-free, for me I went 3 months without meds after weaning off prednisone but it was pretty awful as my body obviously wasn't ready yet. My rheumatologist has me on Leflunomide now as I didn't want to go back on Prednisone. My CRP has been good for several months, though I do have shoulder discomfort still (2 out of 10 in terms of pain, so not bad), will be coming off meds in October and see how it goes. My rheumatologist believes PMR can be a one time thing.

I feel this is as much of an emotional journey as physical and encourage you to be really kind to yourself, to understand that you will be just as physically fit as you were, it just may be a short wait while you get through this, to seek support if needed and educate the people around you so that they can really understand and empathize with what you are going through and be there to comfort you.

I always like to think about what I may have learned from having this experience but I'm not there yet.

All of us on this forum are here for you!
Rosie

@rosi75 Thanks so much Rosie. It's so encouraging to read such a positive post. It's so weird this condition. Today here in London, the sun was shining, a beautiful late summer day, walked in the woods with friends and felt totally healthy. But then the dark thoughts start. I've only been on Pred for less than two weeks (12.5mg now and then next to 10mg) and the pain and symptoms vanished almost the first day and not had any pain since. So your brain starts thinking, 'oh this is going to be ok'....but then you realise that this might be the best I'm goiung to feel for a long time and I get really despondent. I absolutely HATE the idea of taking Prednisone for a year...and feel so tempted to try and come off of it before I enter the tunnel and hope for the best. I feel I'm 58 ans really fit and healthy and I trust my body to fight it off. But then that's probably delusional thinking. I really am scared of the side effects and that I'll get rid of PMR pain but have loads of other s**t to deal with and I wonder which is the lesser if two evils. Anyway, I've gone dark again there, but as I said thanks for the lovely reply and some HOPE. I guess no one journey with this thing is the same....Martyn

I had my first about eight years ago and I’m currently having another. Each time controlled with prednisone. a good Rheumatologist will get you back to riding and playing tennis in under a year. I went to HSS in Manhattan for treatment. Good luck and don’t be fearful. You are young and vital and that works to your advantage. Good luck.

@martyn
I totally get all the "worries" that can find their way into our minds. For whatever it's worth, you are quite young, healthy, and on very low doses of Prednisone. (73 here, no where near as healthy as you with Sleep Apnea, breast cancer, chronic pain from spine, blah blah blah, etc), on 15mg to start 7/31,then 20mg, then 25mg to get all pain/symptoms under control. Tapered to 22.5mg 1 week ago. The best advice I can think of for myself or anyone, is to try to take this whole thing "One Day At A Time," trust your body as you say. Learn everything you can about PMR, and what supplements, vitamins, diet, will help your immune system and then go from there. Try not to look way down the road at how long it might take, that can only lead to those "worries" that won't help in any way.
Each day is a gift and you have many years ahead and most people don't seem to be left with really bad issues after getting off Prednisone from what little I know. May you find peace in your mind and heart and continued good results in tapering down. Blessings and prayers Martyn

@martyn hang in there, Try and find “moments”of peace Happiness and smiles.
Call a friend, family, help a friend, watch a good old fashioned happy movie. Look at Dolly Parton, you just have to smile.
Make a list of all the ways to go around that dark tunnel.
You can!

@martyn yes, the back and forth with feeling positive then it turning negative and then back again is completely normal - as a human being that values your life and your health you are experiencing something very difficult so this back and forth is natural (re: my therapist). I would often have difficult thoughts amidst doing something supposedly fun and it bothered me, but being bothered and trying to banish negativity was not a good solution for me, a hard lesson I am still learning. I was mentioning in my previous post about what I may have learned from this experience, and that came to me this morning, so I wanted to share. I wouldn't have thought about this if not for your post so thank you for that 🙂

It sounds like walking in the woods with friends is a happy place for you, seek more of those happy moments even if at some point it might seem excessive to you logically (another lesson I learned). But still remember you don't have to be okay all the time, you are human...

It's so easy to say take care of yourself but can be really hard to do in practice, so I encourage that. Two years ago I bought a book on Self-Compassion by Kristen Neff but it remains on my shelf barely read, I have moments where I pick it up but then shortly thereafter put it back down because I don't like self-pity, even though when I read it, it's not about that at all.