GCA sight

[Spanky2019]

Went into ophthalmologist urgently yesterday. (See I have listened) Pain in other eye & continued back of head pain (not bad level3) DR didn't see anything that wasn't a problem before and said continue on 80mg. Said todays eye could be muscle strain. Vision is unchanged-not worse! How can I have any pain on this dose of pred? All the other pain is gone head, tongue, arms, ... So weak & shakey I can hardly walk, but each day a little more content doing nothing & not have pain.

[SnazzyD]

It’s good that most of it has gone and yes, you will feel very wobbly at 80mg. It is always a challenge trying to work out what pains and sensations mean. Just to keep in mind, it’s worth knowing about tmj and sternocleidomastoid pain. I have been troubled with both of these especially at the height of muscle loss. They both can simulate the start of a flare even eye pain. One day I had temple pain, sinus, eye pain, all sorts. I touched my neck and it was sore in line at which point I decided it was an inflamed artery. Once I’d calmed down I realised it was a muscle.

physio-pedia.com/Sternoclei...

mayoclinic.org/diseases-con...

[Spanky2019 in reply to SnazzyD]

Thank you Snazzyd. Awareness of these potential pain causes could be useful. I'll hope I won't have to learn more about them. Too many diagnoses piled on too quick. I think pred effect . I blame everything on pred. Cognitive difficulties & vision issues makes it hard or impossible to research.

[SnazzyD in reply to Spanky2019]

I can imagine but just keep it in the back of your mind because they are fixable. Whenever I thought I was having a flare, before I knew how to tell, I went off to my Bowen therapist. If she made me feel better in an hour and/or Paracetamol did the trick, it wasn’t a flare! The bit she always settled on we’re those two areas.

Anyway, sounds like you are hanging in there which is the best you can do at the moment.

[Spanky2019 in reply to SnazzyD]

Thank you so much.

[Blearyeyed in reply to Spanky2019]

Yes , you don't want to blame everything on the Pred , or even the PMR/GCA.

If there is still pain , especially around eye muscles at this level of Pred , there could be a minor muscle or nerve related cause .

Simple paracetamol could ease it , or if it is regular discussing where the specific pain is most and what it is like , and if you have noticed anything like pins and needles or little twitches could mean you are having non PMR pain or symptoms that could be soothed with a mild muscle relaxant for a short period until your body has got used to the steroids and the inflammation is no longer a trigger .

Sometimes , it's better to have more diagnoses rather than less , both for peace of mind so you don't keep stressing about what you might have , and so the right drug combo is found to help your whole body , which would also help you recover and reduce the drugs quicker.

[Spanky2019 in reply to Blearyeyed]

Yes,good ideas. Pains not that bad but keep thinking I should be better by now. Anyway, I called dr today. Had all manometry & esophageal testing months ago & all show problems, but worst is swallowing/choking problem & huge wt loss. Think I l'll be better if I'm not afraid of choking. Dr is now trying to get me into speech/path this week to help me with this. Think this would help a lot. Thank you

[Blearyeyed in reply to Spanky2019]

So are you also having problems both swallowing in general , talking , and with stomach emptying and digestion?

Before the GCA did you have some problems with those , heat sensitivity , nausea , vertigo , palpitations , unusual sweating or no sweating when you should ?

[Spanky2019 in reply to Blearyeyed]

Nausea & vertigo for sure. I've had basilar artery migraine with brain stem ischemia. Central lines for meds & hydration for that years ago. Got sepsis twice while in hospital for so I have aortic regurgitation from all that. Kind of a mess. But when I've been well enough I ignored it all & overworked & tried to make up for my sick time away from family. Sounds crazy I know. Paying the piper now.

[Spanky2019 in reply to Blearyeyed]

Didn't totally answer your ?. I had gi problems first several yrs. before gca rx. Can gca be brewing for a long time before too hard to ignore. Who knows what causes what when one plows thru and ignores the body's signals.

[Hidden in reply to SnazzyD]

I have had problems with my neck, identified at pain clinic, as sterno, for many years and it feels like my head falls off its mounting. It's the nausea, dizziness and increased sensitivity to motion sickness, as well as face and sinus pain than effects me. If I stretch it out I can sometimes help the effects which has come in very handy over the years.

[SnazzyD in reply to Hidden]

It’s the first thing to go when I’m stressed

[Spanky2019 in reply to SnazzyD]

This disease has so many symptoms related to so many body parts. Maybe some of the other health issues I have are related to gca. Need to talk with Dr about deeper understanding of what all is wrong with me & how this all happened. Probably no definitive answers but theory at least. I think right now they just want me to rest & let the prednisone do the work. I'm ok with that for now (Could change my mind in 5 minutes. Lol

[Spanky2019 in reply to Hidden]

Hank you. Hope your day is sunny.

[Hidden in reply to Spanky2019]

Thanks...I think you will be surprised at how many symptoms are GCA. I had same process with pmr and it shifts my perception of when it started when I find another piece of the jigsaw.

[Spanky2019 in reply to Hidden]

One more thing I've been wanting to say to all of you special warriors responding to me. Depending on what Dr we talk to they're not all optimistic for a long life. You know there is so much sadness to think about. I don't know any of you but can't thank you enough for everything. No more talk like that but truly heartfelt thanks no matter what.❤

[PMRpro Ambassador in reply to Spanky2019]

Studies have shown that managed PMR has no long term effect on lifespan. GCA - similar although I suspect that there is a higher rate of stroke and other cardiovascular problems which mean a less good QOL. Women live longer - just not always as well ...

[Blearyeyed in reply to Spanky2019]

Perhaps you need to give those Doctors some happy pills , in my guise as Doctor Venom , scourge of all poor M.D.s 😂😂😂 , may I suggest a packet of Strawberry bonbons on repeat prescription, one to be taken as required whenever they feel the need to tell their patients they are all doomed without checking the facts.

As far as I know , like Pro , studies have no shown significant research that PMR or GCA which is treated will reduce the possibility of a normal life span.

So there you go , at least that's some happy news xx

[Spanky2019 in reply to Blearyeyed]

Yes, you made me smile. Thank you. Good night

[Hidden in reply to SnazzyD]

Snazzy, that sure is some snazzy info. I noticed if my posture is not at its best I get the temple headaches and jaw tightness. For a day or so. Then goes away until I practice poor posture or sleeping with pillow too high. It sounds like the Sterno and tmj. At first I thought it was gca, but jaws never hurt and no claudification. Just felt tight.

[Blearyeyed in reply to Hidden]

Stress and insomnia can add to the muscle tension and pain in these areas too.

[Hidden]

Hi spanky, I am glad you got them checked. I suspect it just may take a while to clear out inflammation after that reduction plan confused the issue. It could well be pred at the high dose, but I am sure a gca person would know better than me! Just keep relaxing and let your body recover more. 🌻