RA, lupus & chronic sinusitis

Try Xhance it’s a nose spray. It’s for people with autoimmune diseases and sinus problems. I get it through my ENT doctor.

@artemis1886 thank you so much! I’m willing to try anything at this point. I’ll discuss with my ENT

I'm wondering if there has been discussion about the immuno-suppressive side effects of your meds? I'm on Simponi infusions and they suppress my immune system. I'm more prone to infections, still wear a mask in crowds.
I'm sorry to hear what you've been through. Your immune system needs a reboot. Of course I understand why you stay on the RA/lupus meds: we don't want flares.
Take care and let us know how you're doing. I hope you get more comments or find them elsewhere in these support groups.

This is what my ENT has me using, yes I went through the whole sinus surgery it was 20 years ago and ran into a wall that night. Azelastine HCL and Xhance. Right now my asthma is starting to bother me with the Texas weather. I have lupus, mixed tissue disease, Hashimotos, Sjogrens and several different types of neuropathy from my autoimmune problems. For my immune system I take IVIG it’s to boost your immune system if you get sick easy. No one has put me on medication for the lupus the mards I am allergic to sulfa drugs the methotrexate I can’t take I have problems with my stomach ulcers. Sometimes they bleed and I can’t take nsaids. They are talking biological with me and the IVIG for my immune system. I use Panzyga for IVIG.

I also have multiple (four) autoimmune diseases, with RA being the worst, I suppose. Over many years, and on all of the TNFi's I had plenty of "colds", but things got significantly worse on the JAK'S. First Rinvoq, and now Xeljanz. I had two sinus surgeries in my 30's which cleared up the constant infections issues, but once I developed RA, I caught way too many bugs. My current ENT says that as long as I'm taking a JAK, this is going to be a problem. I also developed "JAKne" & chronic yeast. The ENT has me using an antibiotic nasal wash, the GYN has me using a boric acid suppository, and the Dermatologist has me on an antibiotic lotion. I hesitate to stop the Xeljanz because it is helping to keep the RA under control somewhat. It won't undo the damage that's already done, but because I'm 69, I'd like to get through a few more years of functionality with my nasty joints. As they say, these choices put you between the rock and a hard place. You simply live with it until you can't. Good luck

Thank you for sharing your story. I’ve at some point taken all the medications you mentioned. Xeljanz worked well for me as does the rinvoq which I currently take for keeping my RA pain under control. I also take Hizentra infusions to keep from getting sick, which has is also working well. I just started dupixent injections to help block the type 2 inflammation in my sinuses. I’m trying to be patient as it says it can take up to 8 weeks to see a difference. I haven’t had my sense of smell for close to 8 yrs. I just dealt with it but now that I’ve lost all sense of taste too, it’s taking a toll on me. I just eat survive at this point as there’s no enjoyment in it at all. Best of luck to you!

@artemis1886 thanks for commenting. I haven’t tried the Xhance but will talk to my ent about it. I also take IVIG infusions (Hizentra) which has helped with me getting sick all the time. I’m just really frustrated with my complete lost of taste & smell. I started Dupixent 3 weeks ago so I’m praying it helps restore my senses.

@brcc How long have you been on IVIG? It took about six months for mine to build up and start working.

I’ve had RA for at least 40 years. And I’ve had constant sinus problems for longer than that. It ne er occurred to me that the two could be connected.

@cmspringer I’ve had RA for almost 30 yrs but didn’t start having issues with my sinuses until about 10 yrs ago. It’s my understanding that inflammation from auto immune diseases can occur anywhere in the body. I just started taking Dupixent 3 weeks ago. It blocks type 2 inflammation in the sinuses. You might talk to your doctor about it. I’m just praying I get my taste back, it’s a dull world without it.