Frustrated...

[Mctd]

Hi everyone, just looking for advice forca couple of issues. I'm am plagued with sinus issues having Sjogrens. My rheumatologist has prescribed me meds which has helped greatly with my eyes, inside of nose and mouth. However, my sinuses are driving me mad. I'm not due to see him for a couple of months and just wondered if anyone had any suggestions, I wake everyone morning with headaches that linger all day.

Secondly, I found myself A and E recently. I think the paramedics thought I was having a heart attack, but eventually 8 hours later, I was told it was a blockage in my bowel. I was sent home with some laxatives and told to go see my GP if it got any worse... I made an appointment anyway, as I just felt something wasn't right. At the appointment he was shocked that they'd let me home as my liver function test showed that a particular enzyme was double what it should be. He also confirmed that my gall bladder was inflamed and I was having a diverticulitis flare... I'm now waiting for blood tests and a scan. Could this all be linked with my auto immune condition? I did ask the GP and he said no, but I'm not sure. I'm so frustrated, as not a day goes by where there isn't something and it seems to take so long to get any answers. TIA

[weathervane]

lm sorry you are having such a horrible time at the moment . When I first started on treatment ( rituximab) I had awful sinus problems, started using sterimar saline nasal spray and I noticed after a while that sinus issues were much improved., i used it 3 times a day im down to once a day now.

Im not sure if your other issues are related to sjogren’s, I have diverticulitis as well and i was told it was more due to my age!!

I hope you get some answers, take care!

[Mctd in reply to weathervane]

Thanks for replying, I'll look into that today. Ive got to the point where I feel I'm going mad again, a point I see many people on here get to. X

[DorsetLady]

Old fashioned remedies for sinuses- especially head over bowel of hot water- sure your mother advised that as a child!

vicks.com/en-us/treatments/...

[StriatedCaracara]

Sorry to hear about what you have been through, including A&E visit. Hope they get on top of things soon.🙏🌸

Just read this on SLE and diverticulitis so thought would include here.

mylupusteam.com/resources/c...

[JCZW]

Morning MctdSorry to hear that you are having such an aweful time.

I have Lupus SLE and many other conditions. I also have vestibular ocular which affects my ears and balance with no cure. I also suffer with bad sinuses. I also use Sterimar nasal spray and Blephasol eye lotion twice a day.Which I get on prescription. It helps but doesn't get rid of the sinus problems. I always end up having antibiotics which with lupus causes other problems. I have headaches most days but just try to plod on . Its not easy copi ng with these conditions .

I really hope that you can find some relief soon.

My doctor is really good but sometimes I think they don't really understand what we go through.

Best of luck to you. X

[Chris21]

Hi Mctd,

I can relate to sinus pain as having sjogrens I also have a deviated septum and chronic non allergic rhinitis. All year I’m fighting sinus issues. I use a steroid nasal spray that also has antihistamine. It seems to help reduce inflammation of the lining of nasal passage. I also do a nasal wash if it’s blocked a lot, then the heated eye mask is great for not only yours eyes but also nose and sinus passage or a warm flannel helps. A massage around the eyes and nose can help. On occasion when it’s gone ‘haywire’ then I have to resort to antibiotics.

The other problem you have I’m not so sure on as I’ve not been diagnosed with diviculitis. I have had my gall bladder out and had pancreatitis twice and have been diagnosed with PBC as my enzymes were very high. Since diagnosis Im Taking orso tablets and not had any problems since. This is due to having lupus SLE and sjogrens. So yes, it is auto immune that is a contribution of my conditions

Life can be challenging and frustrating sometimes. Hope you get some answers soon 🙂x

[chrisj]

I have Sterimar for when my nose is very dry, can't use it a lot as the salt burns my nose but used sparingly it does help. Sjogrens here as well.

I also use a junior Vick ointment to help clear my nose when its so stuffy. Sinus pain hasn't been a big problem just vague pain and what feels like slight headaches over my eyes now and then but not a major problem. I've found that Vick eases it. Hope you get some relief xx

[Hidden]

Hi I take a daily antihistamine which seems to help me a bit.

I also have diverticulitis and colitis, of the two colitis affects me the most, with copious and sometimes constant diarrhoea and I’ve read research that suggests, lupus suffers do experience more gut issues and are more likely to have colitis. I’ve also read research that links diverticulitis in particular with RA . All these autoimmune diseases seem to have some overlapping symptoms. Often very misunderstood by our medical professionals.

Hope you find some answers soon

[Dollyw]

hi so sorry to hear about your problems. Really hope you can get relief and help with the symptoms soon.

I have SLE also diverticulitis and sinus problems. I have had two ops on my nose and the last op was major surgery. Since then my symptoms have improved and have actually got my sense of smell and taste back. Personally I think all these things could be related to autoimmune. Best wishes to you and hope you feel much better soon x