PBC Foundation
6,738 members5,807 posts

Any input

I’ve been taking 1000 mgs of urso

50 mgs of AZA

Down to 10 mgs of prednisone

I have aih with pbc being secondary

I’ve been dealing with burning nose, massive headache and pressure on my cheeks.

I thought to be allergies.

I am Ana negative and seen my ENT dr today and he didn’t seem concerned

I thought I had allergies.

My opt/eye dr. Said he didn’t believe that I have sjorgens but I’m hurting.

Can this be medication related or new autoimmune disease or allergies

I can’t do the prick test cause I take AZA

Any advice will be helpful.

I was told to rehome my cats and I’m working on it.

I can’t just dump them.

23 Replies
oldestnewest

That sounds like a sinus infection to me. I hope it isn't because that is miserable.

Reply

I was at the ENT today and he said that I don’t have a sinus infection. I have to ask my primary Dr to call him tomorrow. He wants me to use a nose spray nasonex for a month. I could tell that he wasn’t sure of my autoimmune crap and had to research it. He did say that he didn’t want to prescribe a steroid spray cause I’m already taking prednisone. My nostril is so darn dry it hurts

1 like
Reply

In the meantime try warm steamy towels over your sinuses. It should help you nose get some moisture.

Reply

I’m going to try that. Thank you.

Reply

Jenny,

I'm sorry about the cats. Do you think your allergic to them? For the past 2 months I've had chronic dry eyes and even my mouth gets dry occasionally. It's mostly my eyes though.. I'm putting drops in all day long and an oil for overnight. So annoying and my eyes are puffy and bloodshot all the time.

I haven't been tested for Sjogren's yet. But the symptoms I'm having sure feels like it.

I have had cats and dogs for over 30 years. Mine are inside the house. It would be interesting to find out if this was allergies, yet most allergies cause watery eyes and runny nose. I'm the complete opposite.

Stella ❤

Reply

Are you ANA negative? I am allergic to cats but with no immune system it’s more hard on me. My nose is the only thing that’s dry. I take eye drops cause of itchy eyes. My animals are in and out

Reply

I'm not sure about the ANA thing. When my rheumatologist tested me for a bunch of things I believe I was ANA negative. My RA is called seronegative RA.

What does ANA stand for?

Stella ❤

Reply

ANA is one of the test that they run for lupus. 70% of people with sjorgens are ANA positive. My dr said that pbc will never be a problem for me and that aih is under control and caught early and anything symptoms wise has nothing to do with pbc or aih. Has to be the meds. I’m sure that you were tested for ANA. I’m reading so much about sjorgens. Like pbc and aih being a market then I read somewhere else that it’s not a marker.

1 like
Reply

OK.. Yes I was ANA negative. It was last year... But Im sure they tested for Lupus. I'll make sure tomorrow. Office is closed now.

That's great news to hear about you though!! It probably is allergies.

Stella❤

Reply

If you’re ANA negative, I believe that they don’t need to test for lupus. However I did read that ANA can fluctuate. Who knows. My AMA M2 was .8 and ASMA was a low positive too. I’m just trying to ignore the diseases and live on. It’s hard when my nose is on fire.

Reply

Yes, that's what I meant. There wasn't a need to test for Lupus... If I remember correctly, I was ANA negative. This dry eye is horrible though. It's worse over night.

Your poor nose! Nothing helps give you any relief??

Reply

How are your enzymes? A lot of people complain about their eyes with pbc in the Facebook groups. I tend to believe this group more than Facebook members.

Reply

I'm having labs tomorrow. 3 weeks ago only my alk-phos was up. 163. So, I may need another ANA test.

Reply

I’m now getting my blood draw every two months. My next apt at Mayo in 6 months from oct. I’m not sure how sjorgens is tested. I read so many different stories. That’s why I would ask in this group.

Reply

OK. I will. 👍

Reply

I had similar experience last winter it was horrendous went to my pharmacist and he gave me a saline wash for my nose. It did help but still lasted for weeks.

2 likes
Reply

I am water boarding. Lol

1 like
Reply

Aww, I’d have a hard time parting with my fur babies. Sounds like you may have sinus pressure. Hope you get better.

1 like
Reply

Hi There, I have PBC/Sjogrens and I get dry sinus - which is just as bad as wet! I use a sea water spray up my nose at night and it does help. Big Hug Kandiepat

1 like
Reply

Is that the only symptom or do you have other symptoms? Are you ANA positive? Thank you for responding

Reply

So suddenly you you're allergic to your? How can that be when you're on steroids? Maybe you're allergic to some of your meds or the fillers?hat is a possibility.

1 like
Reply

Sjogren's and Blepharitis symptoms are very similar. I have also been diagnosed with Blepharitis. There is a product called OccuScrub (or you can use baby shampoo) that helps the itching and watering eyes. The Sjogren's causes both my eyes and mouth to be very dry. I drink water 24/7. I recently started using the Biotene Gel under the tongue which seems to be helping my dry mouth. I will wake up in the middle of the night choking from the dryness. My dear sweet husband makes sure I have water close by at all times. I have to use Sensodyne toothpaste because the constant dryness has begun to affect my teeth and gums and causes pain. I've only had Sjogren's for a a couple of years and I wonder why now? Best Wishes, Wanda in KY, 80, PB-dx 1991/AIH dx 2011.

1 like
Reply

It takes time to completely dry our glands....I’m not diagnosed sjogren yet but I do have symptoms like dry eyes and mouth mostly in the evening and in fall..burning while urine like that..so I’m taking all the precautions from the begin

Reply

You may also like...