Vasculitis UK
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GPA and sinuses

Would anyone be so kind as to share their experience with GPA (or other autoimmune disease) sinus involvement?

I'm in "undiagnosed limbo" and am struggling with what symptoms I should pay attention to--- and not. Several months ago I had a scope of my sinuses and they were clear. However, right now I'm having-- please excuse graphic language-- green and bloody discharge, which gets dry and uncomfortable while at sleep; my nasal pathways are inflamed. I placed a call to my ENT and am waiting to hear back. Mind you, at 56yrs old, I only just had my first full blown sinus infection approximately 1.5 years ago, prior to then, nothing that extreme.

Thanks to all the folks here who have shared their experiences. Your stories are invaluable.

Canygirl

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I have GPA: I got my diagnosis once my eyes, kidneys and lungs got involved, and my ANCA blood test was positive. For many years beforehand, I had a permanent runny nose. When I got a cold the mucus would be thick and lumpy and blood streaked. It hurt my ears to blow it out and was a relief to get rid of it. I also had ulcers in my nose, causing bleeding and inflammation. Now my disease is more advanced I get sinus pain but the treatment has also stopped the symptoms. Hope you get some clarity soon.

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Morning Canygirl61

I was diagnosed with GPA in January after 18 months of what are now related issues - fatigue, joint pain and horrific sinus/nose/ear issues. For 18 months I was constantly blocked up nasally and every morning terrible crusting etc. In January I was admitted to hospital due to joint pain/swelling and then the vasculitic rash appeared and then rests etc and it was all confirmed.

I am now about to have my 4th chemo/steroid infusion this week and I am responding well to treatment and will hopefully get to remission. I am on 50mg of Predisalone a day which I think is helping so much (yes the side effects are hard). And that will taper down I hope soon!

I have the eNT specialist on he 4th april to see what they suggest as some mornings I still have crusting etc.

It’s a tough disease to get diagnosed but the treatments are there. Albeit tough too!!

Keep going - we are all here to help

Carolyn x

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I had an operation to clear my sinuses and at that time they took a biopsy as at the time my blood was ANCA negative. I had had GPA IN the lungs previously cyclophosphamide cleared the lungs but not the sinuses. If I sneezed my nose would bleed. I had horrendous pains in my head and face. By the time the operation finally happened my septum had nearly breached. The biopsy showed Wegeners in the sinuses and I had another course of cyclophosphamide which worked. The operation was a great success and I have used Sterimar once regular basis to keep sinuses as clear as possible.

Good luck with your treatment.

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Hi Candy girl I have Wegeners and suffer badly with sinus problems I have been under the ENT and I have a spray which I use at night and I have to syringe my nose out with a solution of 1tsp of Bicarb + 1tsp of sugar + 1tsp of salt in luke warm water its not very nice but all the mucus then comes out. Good Luck

Sandra

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Hi Canygirl

I had sinus involvement for about seven years before I was diagnosed with EGPA last June

I developed allergies then asthma then lost my sense of smell then my hearing in one ear was diminished

Eventually I was so ill I ended up in hospital for 5 weeks- with many organs damaged-during which I was diagnosed with EGPA

Treatment has been excellent and many of my original symptoms have now gone but I will have illness the rest of my life

Harry

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Hi Harry,

It is helpful, yet simultaneously sad to read what so many people have suffered through— or are still suffering with.

If my eye doctor, who treats me for chronic dry eyes with reoccurring corneal abrasions, hadn’t referred me to a Rheumatologist, I wouldn’t even be aware that I have an autoimmune disease. I suppose I’m fortunate that I have a team trying to diagnose and treat, before I get worse. That being said, I’m still in limbo, and scheduled to see my rheumatologist and ENT this morning. My lab results from last week’s testing revealed slight elevations in C-reactive protein, BUN/creatinine, Alkaline phosphatate, ALT, sugar, and blood in urine. (Waiting on ANCA and creative kinase results.) My concern, amongst other things, is that my kidneys will become irreversibly damaged, before the doctors figure it all out.

Thanks again for sharing and listening.

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Hi Canygirl61 sorry to hear your suffering at the moment. A query for you and few others with sinus issues have you breathing issues as well (poss asthma?). ?? Like Harry I have EGPA (Churg Strauss) and GPA & EGPA are in the same family but mine is usually instigated with late onset asthma and sinus problems and then goes on..... because a lot of these Vasculitis type autoimmune syndromes are related the symptoms can cross over a bit and we can all differ in our symptoms. It may be worth a discussion with your specialist. That said most of the drug ‘management’ is the same. When I was diagnosed over 10years ago (v v poorly at time and had symptoms for ages that drs didn’t link!!) the prognosis was poor at that time with a 6 year life expectancy, now with careful management and a lot of the newer drugs we can stabilise for many, many years. So whilst no cure yet it’s very manageable, although some of us have major crisis’ that hit us!!

On the issue of ANCA tests many are negative I’m not sure what the percentages are now but at one time it was about 60/40 positive, so a lot of drs don’t rely on it, but it can help with deciding treatments. On the issue of high doses of pred - it would be high when we’re in crisis and then we’d taper, can also go on a slightly higher dose if got an infection. Tapering is a very difficult thing - don’t get pushed by doctors to do too fast - your body will react - not theirs! The rule is usually around 10% of what you’re taking. But when it’s large doses say 40-60 you can come down fairly quickly til around 15-20 then start the 10% every few weeks as your body dictates. At around 7mg our bodies own systems are supposed to kick in. But keep in mind many of us plateau at say 10mg, or perhaps 5mg or so and stick there and we can’t go any lower without feeling quite ill. I’ve been at 10mg now for about 2.5yrs, usually go up to around 20mg for short periods with a/bios when got infection.

Best wishes all.

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I'm not particularly savvy in using Health Unlocked - Vasculitis UK (posting, replying, etc.), so I hope all the lovely folks who took time to reply to my question will see my reply.

First, thanks to all for sharing your experiences!

Second, if I may, to give greater insight, below is my symptom laundry list:

• Daily headaches and facial pain/discomfort

• Ear pain with tinnitus (ringing, clicking, etc.)

• Right-sided, low frequency hearing loss (usually seen in autoimmune disease)

• Dry eyes, with reoccurring corneal abrasions.

• Vertigo (positional and non-positional)

• Adult onset asthma (not severe, and normal lung x-ray with CT scan)

• Shoulder pain for a few years (not “frozen shoulder, nor were there tears), which resolved after three rounds of cortisone injections)

• Hip pain for more than a year, which resolved with a few weeks of prednisone (40 mg, tapered over 3-4 weeks)

• Plantar fasciitis with bone spurs on my heal (one on bottom of my heel, which is typical of plantar fasciitis; however, one is located on the back of my heel, which I was told is often seen in autoimmune disease)

• Years of a chronic runny nose (always was clear, until recent episodes)

• Gastritis (prior to suspicion of auto immune disease)

• Hemorrhagic cystitis (prior to suspicion of auto immune disease, with no explanation)

• Neck and back pain (herniations in thoracic spine, as well as neck and lumbar)—may be unrelated to all of this.

• Positive and or elevated: C-ANCA; C-Reactive Protein; ANA; Angiotensin Converting

Enzyme (ACE); 1,25-dihydroxyvitamin D, Creatine phosphokinase; Urinalysis with blood and protein (though not recently)

Currently taking 2.5mg prednisone daily, which has reduced (not eliminated) the headaches, facial pain, and tinnitus clicking.

I know there are many of you with much greater struggles, and I will keep all in my prayers.

Thanks again!

Canygirl

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Thanks for this list! I was interested to see that bony spurs on the heels are associated with autoimmune disease as I've had one for ages on my right foot and apparently have a "talar beak" on my left now. Physio exercises are really helping me.

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Hi Canygirl61 I was diagnosed quite early with, EGPA, Churg Strauss, in 2010, suffered for 2 year's prior with chronic sinus and polops, have had 2 sinus ops have lost sense of smell and taste, have a brilliant immunologist who is on top of it I am very fortunate. With sinus issues I use a sinus rinse and put 10mg of prednisone in it works great saves taking higher dose pred I am able to get my sleep. My first post, not easy to find people to chat with these rare conditions.

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Hi there. I’m here looking for answers for possible Vasculitis but spotted your post and felt I should flag up Sjögren’s as a possible contender in case you aren’t yet aware of it or are already diagnosed but hadn’t thought of it? I have all your listed symptoms and some more.

Your mention of corneal abrasions caught my attention as this is a classic sign of dry eyes of Sjögren’s - either primary or secondary.

I have Sjögren’s and frequent nose bleeds and other changes to the skin around my nose and in the visible parts of my nostrils with burst capillaries all the way up. My nasal passages are very dry, as ENT confirmed last year, plus I have a slightly deviated septum so this adds to the problem a bit. I get sores and some crusting around my nostrils and within my nose and have to use naseptin often. I was told to avoid nasal sprays and decongestants so I do but I sometimes use my preservative free eye drops up each nostril when the large dry scabs at top of my passages become unbearable. My nose and front of my jaw feel very tight these days as if under intense pressure.

I never used to get sinus infections or problems but this year they have plagued me. I also have constant tinnitus and done hearing loss - all related indirectly or directly to my autoimmunity I’m told.

My sinus CT was normal last year so the ENT said that the excessive dryness and neuropathy of Sjögren’s accounts for all my ENT problems. Nevertheless my face, including tissue around my eyes, nostrils, lips and gums are increasingly numb and tingly.

I have TN and TMJ and probable Eustacian Tube Dysfunction plus small fibre neuropathy - all relating to Sjögren’s I’m told - not to mention the rest of me and my balance (ataxia) is badly affected by neuropathy too. My kidneys are now slightly involved and liver too - Sjögren’s can affect the organs as well. So if you haven’t already it may well be worth getting Sjögren’s investigated.

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Hi Twitchytoes, thanks so much for your message. It comforting to know I’m not alone in this. Actually, the very reason I’m “down the rabbit hole” of searching for autoimmune disease diagnosis, is due to my eye dictor’s suspicion of Sjögren’s. My specific blood tests and lip biopsy for Sjögren’s were negative. I currently using a combination of two prescription ointments—antibiotic and an anti-inflammatory— in my nasal passages to keep them from crusting and bleeding.

Yesterday I met with a Nephrologist, who suspects a multi-system autoimmune disease— which one(s) is the million dollar question. He wants to order an MRA of kidney and mesenteric artery, that is if I can tolerate the dye. Which means I’m doing a 24hr urine collection and more blood work to further evaluate my kidney function. If I don’t qualify for the MRA, or if I do and the MRA results are negative, then a kidney biopsy would be next. I’m also scheduled to see a new gastroenterologist (mine moved out of the area) for my digestive issues and elevated liver enzymes.

In terms of neurological symptoms, I’ve found some improvement being on a low dose prednisone— for now, it’s like a bandaid.

Thanks again!

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It’s so complex isn’t it? I was initially diagnosed with RA and was already Hypothyroid. My lip biopsy was 100% diagnostic of Sjögren’s but my +ANA points more to Scleroderma. My symptoms resemble MS most. And my CRP and PV/ ESR are always high to very high. I have CKD stage 2 and trace blood (often protein too) in my pee - which my rheumatologist monitors closely.

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I’m really so sorry. I suppose my situation is far less advanced, compared to you and others here. My guess is that I would be suffering with multiple issues, without any knowledge that they all could be linked, had it not been for my eye doctor! All my blood elevations are in the low elevated levels, but so many markers as to not ignore— plus the c-ANCA :( The Rheumatologist in NYC says I’m “complicated.” Aren’t we all. Thanks again for your responses.

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