PMR/GCA and Sjogrens disease

[Mstiles]

Does anyone have Sjogren’s disease along with PMR/CGA?

For months I’ve been struggling with worsening vision in my left eye, and trying to figure out if I was having a flare. The left eye vision is like it was before cataract surgery, worse some times than others, especially after reading. Opthomologist is no help - “Use eye drops multiple times a day” and see an optometrist for refraction, you might need new glasses”, to wear even though I’ve had cataract surgery in both eyes and my vision has been fine until a few months ago.

She examined the eye and said the brief eye chart test and the implanted cataract lense look fine. Also field of vision and retina scan are OK too.

I’ve got the constant dry eyes and mouth, funny taste, possible dental issues, lump in the throat when swallowing, etc symptoms of Sjogrens but I had negative ANA and I believe negative or inconclusive rheumatoid factor tests several years ago. I don’t have a rheumatologist at present.

I’ve also been referred to an ENT otolaryngologist specialist for autophony, echoing of the voice, possible eustacian or middle ear problem.

I haven’t increased pred during all this.

Can’t read, draw, watch TV without making the left eye vision worse.

All suggestions on how to proceed are greatly appreciated.

[PMRpro Ambassador]

There isn't a lot to do in Sjoegrens except manage the symptoms - so use the eye drops as much as suggested, hourly maybe at first. I was surprised how much difference it made - and experiment with different drops, not all drops suit everybody.

[Mstiles in reply to PMRpro]

Thanks PMR pro. What was your experience with Sjoegrens?

[PMRpro Ambassador in reply to Mstiles]

Don't know if it is Sjoegrens - that requires an antibody to be identified in blood - but there is also sicca syndrome where the symptoms of dryness are the same and i do have several. It is quite common alongside a few autoimmune conditions.

[Mstiles in reply to PMRpro]

Thanks Pro.

Did a doctor diagnose it?

[PMRpro Ambassador in reply to Mstiles]

On the basis od dryness symptoms yes,

[Odosmum in reply to PMRpro]

My Sjogrens was diagnosed by my Rheumatologist from symptoms, because my blood markers are negative for everything. Some 30+ years ago I was diagnosed with serum negative RA, or inflammatory arthritis for the pedantic Dr's, and have been treated accordingly over the years. Current chap, who I have been seeing for 10 years has come to the conclusion that I probably have primary Sjogrens, rather than secondary plus RA, but will not formally diagnose because my symptoms are well controlled on adalimumab and it isn't licenced for Sjogrens.

[PMRpro Ambassador in reply to Odosmum]

Sensible chap - I've just been told by someone that if you have been started on Actemra it won't be stopped in Scotland so I hope the person was right!! My dx in Italy says inflammatory arthritis not PMR - so that will do me, what's a label!!!!

[Odosmum in reply to PMRpro]

As long as decent symptom management is obtained, who cares what it's called. Just keep the appropriate drugs coming 😊

[PMRpro Ambassador in reply to Odosmum]

Quite. Many patients like labels, until they get a scary one - so it seems do some doctors. I just want the symptoms managed.

[Pixix]

it was suggested I have it, yes. I have/had a lot of the symptoms. But it is diagnosed by a test..a lip biopsy, which a friend had donem & it was an easy procedure & not unpleasant. There are other things that mimic Sjogrens, and if you are sure you have it, then get the test done! It’s the best way forward. One of the rheumatologists I’ve seen said mine wasn’t but that many many people get problems with constant dry eyes & mouth, both of wgicg I currently still have. I have Saliveze on prescription, which is a spray & is like ‘false saliva’, so helps dryness. I often wake up in the night with my tongue stuck to the roof of my mouth, & I use Hycosan eye drops at night, & other eye drops all day. The rheumy said to just keep on & then keep on some more…using the daytime eye drops! 5here are also pastilles for dry mouth during the day. I’ve never increased pred for any of it & other linked symptoms,

[Sandmason]

I have had Sjogrens symptoms in the last year, tongue stuck to the roof of my mouth, salivary gland cramping and swelling, blurry vision. But I have been on Plaquenil for more than a year along with prednisone from 20mg down to 3.5 and assumed I wouldn't have a new autoimmune disease while being treated for PMR! My older sister has had it for decades though and I am aware of both symptoms and treatment. She has a rheumatologist, I don't. I also had a funny ear symptom, heard water in my ear when there was none.

However, because my GP (PCP Family Doc) refuses to treat my obvious textbook PMR symptoms, I have to ask for a CRP twice a year, annual bloodwork, TSH etc, She never did even a Rheumatoid Factor at first so this time when labs were overdue, I reminded her that I needed orders and threw in a request for CRP, RF and an ANA. (I had severe discoid lupus when I was young). CRP is back to just1 from 20, RF was negative but my ANA was 1:640. The other 6 ANA type tests were all negative. Looking over all the possible diseases that could be associated, Sjogrens is my best guess. My doctor husband suggested that it is "noise", and it could also be something that has existed my whole life.

My GP panicked and wants me to try yet again to see a rheumatologist, but of course none of them will accept her referrals. She is spooky about everything, especially prednisone. I am spooky about very little.

So I'm paying $99/month for the next year for Direct Primary Care and leaving this doctor behind. If I have to pay for a concierge rheumatologist, or pay out of pocket for one appointment, I will, as they don't like a bunch of people with PMR who are on Medicare, which doesn't pay enough to keep the doors open. I see my new doctor July 30!

[jessy99]

not sure if it’s just prednisone, the PMR or Sjögrens — all the same symptoms and swinging blurry vision/dry eyes etc. I see this a lot in here!!

Opthomologist suggested heat on eyes then massage & drops 2x a day — does help a wee bit and frequent drops. My salivary glands swollen and sore as well. ENT said that cortisone can also cause this

[Missus835]

I have extremely dry eyes. Still often irritated. Had my cataracts done about 2 months ago. But, still require reading glasses. Otherwise vision is spot on. I use eye drops constantly, at least every hour, and find Systane Gel Drops work very well and last longer. I had considered Sjogrens as well, but since I'm doing about as much as could be done...