PMR or GCA Flare. Can GCA affect head/hearing?

[Missus835]

I have written about this previously. I was down to 27 mg. pred about two weeks ago. I started getting PMR flare pain (?) about a week ago. Today, everything is involved and the pain is almost intolerable. Left shoulder, hips girdle, low back, back of neck, thighs, right wrist (where it all began in 2022). Somewhat more alarming (since "I don't have GCA") is my right eye is very irritated even with drops several times a day and blurry. When I touch along my brow area lightly, there is referred pain to my right forehead area. No jaw pain, but I'm wearing a bite guard.

My ears are backed up to the point where I can barely hear (particularly right one). Can GCA affect the head, ears, eustachean tubes, etc. My head feels full and pressured all the time for months now. When I tilt my ear to the right, there is almost a muffled canon sound when the fluid hits the drum (I'm assuming). Also tinnitus. When I move my head around, fluid moves too. Always pressure in the head. My hearing in right ear has diminished to where I have to keep asking "what did you say". Left ear is affected, but not as much. Everything that might be affected by GCA-like things is on the right side.

This became more pronounced when I reduced the Pred to 27. Headache on waking. Hands slightly swollen, but stiff.

My hips are pretty much seized up and when I was into ER last Monday, the doc was reluctant to increase the Pred as I was already at 30. Well, last night I almost went up to 35 or 40 to see if it made a difference. He wanted me to wait to see if the antibiotics made a difference, but Day 5 out of 6 and they have not helped this inflammation. Spending days on ice packs and heating pad. Sleeping a lot.

Can this type of bi-lateral hip, low back, pelvic girdle pain be a symptom of a PMR or GCA flare? As usual rheumy is unreachable and so I've reached out to my former Neurologist. Waiting for a reply. He is swamped after vacation. I will say, it seems to be muscular related, not skeletal. Since I don't know the result of my x-rays, it's hard to say. I have no GP.

Hands up for those who think I should up the Pred to 35 or 40 because this really is tear-worthy pain and I'm able to tolerate quite a lot of pain. It gets worse if I walk or stand more than 5 mins and the next day is - no words (like today).

Although I'm told I do not have GCA because of neg biopsy back in Jan. 2023 and "it is the gold standard", I am not messing with my eyes either. I have been on Pred since Jan. 2022. As DL has said, sometimes eyes are affected when tapering at high doses; not necessarily GCA though.

It is so difficult to taper at this high dose and I've been trying hard to taper slowy, but the rheumy is a race horse and my appointment which was scheduled before the x-rays is not until July 17th. Long, long multi-post. I'm becoming very anxious about doing nothing to help myself. Advocating is all I seem to be able to do. Some days feel as though I'm going totally bonkers. My apologies for the epistle.

[Grammy80]

I'm a three year GCAer--Yes, there have been times where it has affected my hearing. Sometimes, my head would feel 'full'.

I do hope you can get some answers and relief from that pain. If it were me and I didn't have an upcoming appointment--can you go to the ER? Hopefully, PMRpro and Dorset Lady will be along to give you the best advice for the UK system. My best💞

[Missus835 in reply to Grammy80]

Thank you Grammy. I had never had this prior to PMR and thought perhaps allergies, but it's way more than allergies. Had mentioned it in Jan. this year when I had the GCA scare but they just glossed over it, but perhaps they just are not aware.

[piglette]

It is suggested that 25mg of steroids is close to the top dose for PMR. If the steroids are not working you may have something like fibromyalgia for example.

[Missus835 in reply to piglette]

I had a GCA scare in January, Piglette and they upped me immediately to 60 mg. I've been trying to taper it back since then as they said "no GCA" by biopsy, but then I've been on Pred since Jan. '22. Got down to 27 mg and the flare began after about a week. Unsure what is causing this inflammation. I'm on antibiotics (possible UTI) which have had no effect on the inflammation. Waiting on my previous Neurologist for a possible answer. Thanks so much for your response.

[HeronNS in reply to Missus835]

Sigh. There are at least a couple of reasons why the biopsy shows negative. Symptoms should always rule.

Wish I could figure out a way to raise PMR/GCA awareness amongst the medical people in this province. That ER Dr for instance was more afraid of adverse effects from a couple of days trial at higher dose pred than he was of you potentially suffering irreparable damage. At the very least he could have given you guidance about what to do if the antibiotic didn't touch the pain, especially as you don't have a primary care physician to take over from ER treatment.

[Missus835 in reply to HeronNS]

...and I suppose a referral to an ENT Specialist would be months or scoffed at. I agree totally about lack of awareness (sometimes I think they think they know and their ego won't let them realize they don't know a thing).

[HeronNS in reply to Missus835]

Too many don't know they don't know. "There are known knowns. There are things we know we know. We also know there are known unknowns. That is to say, we know there are some things we do not know. But there are also unknown unknowns, the ones we don't know we don't know." Donald Rumsfeld

[Missus835 in reply to HeronNS]

He's right.

[piglette in reply to Missus835]

oh sorry I thought you had PMR. GCA requires a much larger dose. I think they really need to look again at their diagnosis though. Your symptoms do not seem like GCA and if you have PMR the steroids should be making a difference.

[Missus835 in reply to piglette]

I do have PMR and I should not be flaring at 27 mg. You're absolutely 💯 right.

[piglette in reply to Missus835]

Hope you can find out what is causing the pain.

[DorsetLady PMRGCAuk volunteer]

This link confirms that’s ears can most definitely be connected with GCA -

link.springer.com/epdf/10.1...

Perhaps you should forward it to your doctors so they are aware!

The doses you are on should be adequate to stop PMR flaring -so there is obviously something else going on….

[Missus835 in reply to DorsetLady]

I totally agree and about to read the link. Thanks DL. I will forward this to neuro and rheumy, as much as they may get tired of hearing from me. TY.

[PMRpro Ambassador]

Yes - established through research initiated by the NE of England PMRGCA support group and charity

healthunlocked.com/pmrgcauk....

It was published shortly before Covid, it may well not have been read widely. The link has a version in patient-speak ...

[Missus835 in reply to PMRpro]

Thank you Pro. I will forward this link to Neuro/Rheumy as well. Hoping it's not cranial GCA.

[Ridge]

I remember listening to a webinar from an expert whose name I would need to look up. He mentioned that ears and hearing could be affected. But not permanently like sight. I found that comforting. The not permanent bit!

[Missus835 in reply to Ridge]

Thanks! It is comforting. Now I need to find out if that is what this is. Lol.

[PMRpro Ambassador in reply to Ridge]

Not sure that is entirely reliable - it's the same as for vision, if the relevant nerve is damaged enough, it won't recover.

[Missus835 in reply to PMRpro]

Hope springs eternal. I did send the link to Neuro along with an explanation of why. If anyone reads it all...it would be him. Thank you Pro for your epic diligence in helping all of us...and to the rest of the team. Without you all, I'm unsure where I would be at this point. Perhaps the funny farm. 💕