Another Question! Is it PMR or GCA Symptom's!

[SARose]

Back again with another question, After my GCA/Shingles scare last month I'm still feeling pain in my left jaw by my ear. Went to dentist before the GCA scare and said he couldn't find anything wrong. Also, have pain, stiffness in my left shoulder at the back, going up my neck behind my ear area. I've had a awful headache 4 days in that same area and taking Tylenol for it. A night when laying down it bothers me a lot and I cant wear my CPAP mask. On 9mg of prednisone thru August. Does any of this make sense to our seasoned PMRCGA veterans???

[PMRpro Ambassador]

The shoulder and neck pain suggest sternocleidomastoid problems to me - Snazzy is far better at that than I am

[SARose in reply to PMRpro]

I looked it up and it sound pretty close to what I'm experiencing. 😷

[DorsetLady PMRGCAuk volunteer]

Is the Tylenol helping at all, doesn’t sound as if it is?

Normally we would expect pain related to our illnesses to be unilateral, but unless you can attribute your issues to anything else, it must be considered.

As you probably are aware, ears can be affected by GCA… so maybe try an extra 5mg for a few days to see if it makes any difference.

Whether it does or not, you can at least tell your doctor, who you obviously need to

contact in the next few days.

[SARose in reply to DorsetLady]

Thank you. I'm taking Tylenol 500 mg or it but as soon as it starts to wear down it comes right back back. And I am having some pain and fatigue in my right should as well but nothing like my left one.

[DorsetLady PMRGCAuk volunteer in reply to SARose]

Certainly sounds suspiciously GCA like to me ….so I would inclined to try extra Pred for a few days.

[SARose in reply to DorsetLady]

I will

[sequeluk]

I would get it checked out. I’ve recently been diagnosed with GCA and have lost my eyesight in one eye. I had very few of the typical GCA symptoms but did have some overnight pain in my jaw similar to what you describe and the neck pain and headaches. It wasn’t until double-vision started that I began getting things checked out but unfortunately too late to save my eyesight. I’m now on Prednislone and Tocilizumab to hopefully save the sight in the other eye. Best wishes.

[DorsetLady PMRGCAuk volunteer in reply to sequeluk]

You might like to read this then…although I did have all the symptoms, but not recognised by GP. Back before Actemra (TCZ) approved, but been in remission since 2016. Hopefully will help you a little - healthunlocked.com/pmrgcauk...

Would be nice if you could put a bit more on your profile please.

[sequeluk in reply to DorsetLady]

Many thanks. Only recently joined the forum but will update my profile. Very encouraged to read your experience and glad you are so active.

[DorsetLady PMRGCAuk volunteer in reply to sequeluk]

Hi,

See you’ve recently joined, and are now following me…..welcome.

Please feel free to ask about anything, but if you want to sit on the sidelines and just ‘dip in’ that’s fine…but you might like to have a look at the FAQs - link here - healthunlocked.com/pmrgcauk...

[sequeluk in reply to DorsetLady]

Haven’t really explored much on here yet but great to find out there’s so much information available.

[DorsetLady PMRGCAuk volunteer in reply to sequeluk]

Take your time, and remember there’s always someone about, although it’s predominantly UK/European members, there are a lot from North America, the Antipodes et al….so you’re never alone…..

[sequeluk in reply to DorsetLady]

Did you have any issues with your good eye in the early days? I have had a few brief episodes of fading in the other eye and also getting shimmering across the eye that lasts anything up to about 30 minutes so still very concerned about my vision in that eye and it is probably why I have been moved onto Tocilizumab so quickly.

[DorsetLady PMRGCAuk volunteer in reply to sequeluk]

No nothing like you describe...but I was on 80mg for first 2 weeks until ophthalmologist was happy remaining eye okay, and then another 7-8 weeks at 60mg.

Did have headaches for first couple of weeks (not same as pre diagnosis), but not 100% sure it wasn't still GCA, but in hindsight more likely brain trying to fathom out the mono-sightedness. Plus the Pred itself can cause blurriness.

What dose were you on initially, and what dose now?

Presumably Bristol Eye hospital have told you to contact them if you have any issues/queries... would suggest you do that if only to put your own mind at rest...and despite being on TCZ you may need a higher dose of Pred.

Please contact them soonest, but obviously if it happens again then please go to A&E - pronto...you are still very early into your illness...so better safe than sorry.

[sequeluk in reply to DorsetLady]

On 60mg at the moment and probably staying on that for a few more weeks. Have been in constant touch with Bristol and went up to 80mg after the first instances and had an additional intraveneous steroid boost to supplement the 3 I had when I first started. Haven't had the fading now for a while and the shimmering lines have been only once a day and none at all in the last 3 days so hoping it's settling down now and back on Monday at Bristol for a follow-up. The Tocilizumab only started on Thursday.

[DorsetLady PMRGCAuk volunteer in reply to sequeluk]

Okay....sounds as if they are on the ball (as you would expect)....good. Hopefully that has passed, and things will settle down. But you obviously know what to do if required...good luck with TCZ.