Imaging Advice

[montebello]

Hi all,

I'm a GCA patient since AUG 22, and have decreased from 60 MG down to 30 MG since then. I have an upcoming appointment with my Rheumy on MAR 1, and feel I'm at a crossroads when it comes to either increasing, holding, or decreasing my PRED dosage. My current symptoms are confusing and a bit contradictory, and I'm either much sicker than I thought or the PRED is doing more harm than good. So here's my question:

After being on the high levels of PRED that I've been on since AUG, is there any kind of imaging that can be done to help evaluate the current state of my arteritis? If so, what options do I have?

PS: My inflammatory markers are well within normal limits, but as I understand that's no guarantee that I'm still not inflamed.

Thanks

[PMRpro Ambassador]

Not really - in all imaging of inflammation, the signal is suppressed by pred. Sometimes you will get a signal once down to maybe 10mg but you are way off that. However - if there was inflammation not being controlled by the pred - you would almost certainly have symptoms of some sort.

What ARE the confusing symptoms?

[montebello in reply to PMRpro]

Well, I guess two things. First, I started with significant jaw weakness over a year ago, which nudged the rheumy into thinking I've been dealing with GCA since then. The weakness went away and has turned into sporadic, minimal pain. So is this evidence of a continuing inflammation? The pain is immediate, on the first chew, and might actually be tooth related. Not sure.

But the biggest concern is my vision. Way back in AUG when I started the 60 MG PRED, I immediately (like the next day) noticed a significant blurring of my vision. My vision problems have gotten worse since AUG, especially the double-vision. When I tilt my head, I see double. It's been like that since a year ago, but has gotten significantly worse as the weeks go by.

Had a visit with the ophthalmologist on THR. He explained why I see double when I tilt my head. In general laymen's terms, he said the muscles which co-ordinate the eyes have been weakened, and this can be caused by either 1) age, or 2) high blood pressure, or 3) GCA.

His thorough exam detected no problems with my optic nerve or vision in general except a change in prescription, so he thinks it's an age issue.

So I'm wondering if I shouldn't push for some imaging -- just to make sure there's no untreated inflammation going on?

[PMRpro Ambassador in reply to montebello]

"immediate on the first chew" isn't typical GCA pain - that develops as the action of the muscle is too much for the blood supply. Have you spoken to a dentist?

As we've said - with all that pred in the system there is likely to be little use in imaging.

[SnazzyD]

Frustratingly if the Pred is doing this job, a scan is unlikely to show anything. Also frustratingly, it’s not a case of taking Pred and it’s all ok. Yes, Pred can make you feel terrible but at the same time your controlled GCA/PMR is not in evidence so there is no proof that your suffering is worth it. Doctors usually don’t tell you how you might feel and a side effect list is a bit dry and difficult to apply to oneself in terms of actual experience. It all comes as a shock when 6 months down the line you don’t feel like a new person. Anyway, what symptoms are confusing at the moment.

[montebello in reply to SnazzyD]

Thanks SnazzyD. I saw PMRPro's response first so I answered your question in my reply to her. But YES, it is quite shocking and disheartening to be into this 6 months and feel the same as I did when all this started. But hey, there are others in much worse shape so what am I complaining about!

[SnazzyD in reply to montebello]

Immediately my eyes went squiffy on 60mg Pred and from then on my eyes found it difficult to adjust focus with any speed. I scared myself one day having looked up from a book and the garden was blurred for a couple of minute. As the dose changed so did my eyes’ happy distance. The optician said this was normal for Pred and I could change my prescription every month or ride out the constant change. He said the muscles couldn’t react properly but should settle with lowering dose and it sure did. My eyes are back to where they were before Pred apart from some mild cataracts. At its worst even walking along next to a line of objects like a hedge made me feel motion sick because my eyes couldn’t focus. This effect doesn’t help if one is anxiously looking to signs of GCA. My GCA eye signs early on were sparks of light at night, seeing a grey mist fleetingly in the eye of the side I had been lying on at might and black spots in my vision when I was exercising hard.

Your jaw could be a TMJ. My GCA jaw felt like a deep but vague muscle pain like you get in your legs running up the too many stairs. This only happened when I chewed a few times and faded when I stopped. I developed TMJ issues a few months in as my muscles weakened and this hurt the hinge which radiated out into my jaw area. It could hurt just opening my mouth or biting down and sometimes felt dental. I also developed steroid induced dentine hypersensitivity which could cause a deep deep pain in all my teeth on one side if I ate or drank anything warm. All I could do was clutch my face until it passed.

[montebello in reply to SnazzyD]

Thanks for relating your experiences. My eye issues are/were a bit different. It's when I tilt my head in either direction that I see double vision -- as opposed to looking one way or another with the head level (if you know what I mean). No matter though, because you have a very good point -- when we're actively looking for signs of a problem we're very apt to find a problem (confirmation bias). Thanks again

[Missus835]

Also "unconfirmed" GCA, but on 60 mg. of Pred at this time. Went to dentist due to extreme pressure in my head, pressing outward on my jaws and ears (to the point of deafness). Also difficulty swallowing, which could be muscles as well. Diagnosed with acute TMJ/TMD and bite devices are now on order to help realign my jaws (which can probably be attributed to muscle weakness). Try the dentist; mine would not prescribe something he didn't think would work.

[montebello in reply to Missus835]

Missus835 -- thanks for this. But my jaw pain isn't severe enough to chase at this point. I'm just being paranoid I think. But this forum surely helps. I'm going to do my best to have faith and go with the flow. Hard to do sometimes though!

[Duckduckgo123]

my inflammation markers we always in the normal range and I lost eye sight. I started on 60 mg Nov 2021 and now on 8 mg

[montebello in reply to Duckduckgo123]

Sorry to hear about your eyesight! Hope it was one eye only! Yes, I do realize that the markers are not always elevated. Makes it hard to know what to do, doesn't it.

[Duckduckgo123 in reply to montebello]

thankfully only one eye. But yes I kinda jealous of the ones that get concerned about having a flare and they go have blood work to know.

[Grammy80]

For many reasons...I'm just getting to my emails. When I read your post, my heart went out to you and I remember when I was in the exact same place with the exact same questions.

You say, 'am I much sicker than I thought'.....? What I think it is...all of us underestimate the impact the disease has on our life. It is going to require more patience from you than you knew you had....and you do have it. I know the more I learned from the forum and research, only then did I understand what little control I had and what I was going to be dealing with for some time. My advice is to learn as much as possible, it makes it something manageable to deal with....and I know you can. Go easy on yourself and listen to your body.💞

[montebello in reply to Grammy80]

Thank you, wonderful lady!!