GI symptoms?

[Juliesjewels]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.


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[renidrag]

Anca should not be used as a marker for WG. Do you have sinus problems? I only have lung involvement and was diagnosed after two Bronchoscopies. Never had a nasal biopsy. I think the most telling symptoms are in blood testing, especially the SED rate, CRP and Creatinine. Have you had any blood tests run other than ANCA?
Dale

[Alysia]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.

Hi. there can be WG even with negative anca. AND - I had 2 false negative nose biopsies. but I do have WG. my doc did case conference about me, and after consulting with couple of experts, looking at the clinical pic, they concluded that I have wg.
since then I developed saddle nose, which makes me a weggie, with no doubts

[LisaT]

The ENT who believes I have Wegener's said he can diagnose it based on symptoms... I'm ANCA-negative and haven't had any biopsies. He's basing it on subglottic stenosis and obvious inflammation in my nose and throat, and pain and fatigue, I think. (My other docs don't necessarily agree though). It sounds as though you need a second opinion. From what I understand, the SED rate and CRP are pretty non-specific inflammatory markers.. They tell you when you have autoimmune inflammation, but don't narrow it down to which disease. I've had these elevated with polymiositis, then RA. Now they're not elevated although I feel like Wegener's (or similar symptoms if it's not wegener's) is not under control. It seems that this disease is unique in every person, and also overlaps or coexists with other autoimmune inflammatory diseases, so the diagnosis takes someone who looks at all of the signs and symptoms and blood tests and whatever other info they can get, and assesses the person and makes the call based on the whole bigger picture. For sure no one factor should cause them to rule it out, if all other aspects point to the disease. That's too dangerous.

[ingemlb]

Re my diagnosis. Bit complicated as some results were not as expected.

1. I started last early 2013 with intermittent and migrating joint pains that may stay in the one spot for several months. I had had sinus issues for a long time but early 2013 they became nasty in that I was getting constant mucous and daily headaches. The mucous started to get crusty later in the year. I had a very busy year with planned travel and also extra trips to New Zealand as my mother became increasingly more ill. So it wasn't until later in the year that I saw an ENT specialist who did cat scans and told me that my sinus' were severely diseased and would require surgery. I had to fit in another trip to NZ and then had the operation in October. He removed polyps, removed the diseased tissue and widened passages. However apart from the headaches stopping immediately, I never really felt the operation helped all that much as the discharges continued and it took absolutely ages for the bleeding to stop. Unfortunately we didn't suspect anything like Wegener's so he didn't do extensive biopsies of the removed tissues. Sadly on retrospect.

2. Then late December the joint pains became nasty and within a few weeks spread throughout the entire body. In the end I was so crippled by pain that I ended up (at my sisters advice) heading to ER and they immediately admitted me and did umpteen tests.

3. Cat scans, Xray's, MRI's, ultrasound, blood tests were done and within a few days it was apparent that I was suffering from Vasculitis. Next came the trick to find out which type and that took a bit longer. Each biopsy that was done (including the nasal passage but I must say he biopsied only the start of the sinus passages) showed "non-specific inflammation". The Sinus Biopsy was done after I had already been on pred for a week so not sure if that had any impact. Lung biopsy (via bronchoscopy) and stomach biopsy (via gastroscopy) also showed "Non-specific inflammation". No helicobacter in the stomach to explain the gastric ulcers. I had also previously been diagnosed with IBD due to an inflamed ileum but at the time I was in hospital early this year I was deemed too ill to perform another colonoscopy to confirm it.

4. The other symptoms I had on presentation and suffered with for quite some time were badly inflamed eyes. Mine were the colour of tomatoes when I was in hospital. I suffered for several years from recurring corneal ulcers for which we had never really found a cause. It was thought it could be linked to the IBD or perhaps be Sjrogens but never proven.

5. I also had a massive tongue ulcer which took over 6 weeks to heal.

6. Then of course the inflammation in all the joints.

so my Rheumatologist initially thought it may have been Churg-Strauss but then and I am not sure if it was the high Anca or all the blood tests made him lean towards Wegener's. Strangely enough when I saw the ENT specialist for the biopsy he mentioned that once a year he has a patient who doesn't improve after the sinus surgery and this usually is due to Wegener's. At that stage the Wegener's hadn't been confirmed.

So my Rheumatologist decided to call in another expert Rheumatologist. What confused him was that with Wegener's he expected by now some major damage to vital organs and the scans and tests so far confirmed that heart, lungs, kidneys and liver were all ok. Hence the decision for a 2nd opinion. The 2nd opinion was by a Professor who was more heavily involved with Wegener's at one of our major Public hospitals. He was not given any information as to what was suspected. Only my test results so that he would form an independent assessment. He took 5 minutes to tell me I was suffering from Wegener's but felt that as the vital organs were ok it was hopefully "limited Wegener's" and would respond well to Methotrexate. I told him that was what the other Rheumatologist was also thinking and he said well I totally agree with his diagnosis and recommended treatment approach. I now still see this Professor as my Rheumatologist.

So to me it was a rather stressful, frightening and baffling period. I spent over 5 weeks in hospital and thank goodness found this forum very quickly so I could get some advice and comfort from others who had been in this boat a lot longer. Otherwise I think I would have had a massive breakdown.

Not sure if this answers your question Juliesjewel. But that's the best I can do. I didn't really ask them exactly what made them so sure it was Wegener's but I don't have any doubt since arriving here in the forum that this is what is plaguing me Unfortunately. Still not sure if the Methotrexate will do the job. So far I am down to 30 mg daily of Pred too early to tell if the 20mg once a week of MTX will do the job. Seeing my Rheumy on Monday so hopefully he can reduce the pred again depending on blood test results.

Oh the Gastroenterologist at the hospital was convinced that bowels, stomach, mouth ulcer, eye inflammation, sinus inflammation, joint inflammation, lung inflammation and any other non-specific inflammation they found were all due to Wegener's. So she didn't agree with the IBD diagnosis. If that is true then I have had Wegener's at least since 2009 and it seems strange that it only all became very nasty last year given how nasty and progressive this disease is without treatment.

[mishb]

I think you can have it for a long time and it basically takes care of itself without any medical intervention required, then when something big happens - say a virus or infection, stress or accident - it rears it's ugly head, says I'm here and I'm here to stay. I think most people will find that a virus or stress were the main triggers for WG to come out.
Also most people (of course not all), will agree that they have had recurring symptoms for many years or sometimes since childhood, before a full on attack which lead to a diagnosis.
I have no doubt that you have had this for quite a few years, on and off, and the stress of your mother being ill, flying back and forth to New Zealand, and then her subsequent passing, is what finally triggered your WG into a onslaught of symptoms.

[ingemlb]

Yes well there has been no end of stress over the last few years all coming to a head last year. As well as Mum being ill our son had a very bad psychotic episode and we had to make the hard decision to move him out of our home into supportive care as we were finding it more and more difficult to cope with the stress. So that on top of all the trips back and forth. I find that long flights (even 3 hours) seem to trigger a lot of infections and on each trip I became quite ill. so that too didn't help. Then there was the surgery, also stressful. So maybe finally it all got too much
Trouble is we are still totally stressed out about our son moving out. Some days I feel like having him live here with us was actually less stressful but we need to go on with this so that he learns to become independent of us. We are not getting younger or fitter and eventually he will be on his own so best we help him now. He is 41 and it's high time he learns some independent living skills. we thought he could have learnt them here as the DHS provided him with a bungalow but it was all too easy and he became a recluse and depended on us for food etc. Now that he is not living here with us our relationship has actually improved and he is more apt to listen to advice.

Anyway ... stress is rather difficult to avoid. We all have our issues in life

[drz]

How fast Wegs progresses or how far it progresses without proper treatment is highly variable just like the disease itself. It seems the vasculitis can strike any part of the body but it does seem to prefer the sinuses and nasal area, joints, eyes, hearing mechanisms, lungs, and kidneys but it does not limit itself to those areas.

For me the progression from nasal crusting and bleeding to roving joint pain, serious foot pain that mimicked plantar fasciitis, eye inflammation, weight loss, inflamed eye lasted about two or three years despite seeing a dozen doctors for these various symptoms with no one having a clue what was actually going on. Only when the Wegs progressed to lung damage, kidney damage, loss of hearing and balance and extreme fatigue and trouble breathing which led to hospital admission to treat me for a suspected pneumonia, did they even start to try figure it out. By this time I was knocking pretty hard on death's door. My salvation came about only because one doctor thought to send my blood and urine samples to Mayo Clinic and they suggested a 99% probability of Wegs which quickly resulted in a transfer to a University Teaching Hospital where they knew how to treat Wegs. If I had know about the Find a Zebra web site I might have suspected this diagnosis much earlier and saved myself a lot medical treatment and Weg damage. I had hand surgery at Mayo Clinic when my joint pain was just beginning to occur and had thought about asking them for an evaluation of my strange joint pains but didn't follow through with it.

It seems reasonable that stress levels, infections, other illnesses may, or even should affect the severity and progression of Wegs and the occurrence of Weg flares. I believe the longitudinal study of hundreds of Weg (now GPA) patients currently underway is looking at some of these variables and we might know more in a few years.

[LisaT]

How fast Wegs progresses or how far it progresses without proper treatment is highly variable just like the disease itself. It seems the vasculitis can strike any part of the body but it does seem to prefer the sinuses and nasal area, joints, eyes, hearing mechanisms, lungs, and kidneys but it does not limit itself to those areas.

For me the progression from nasal crusting and bleeding to roving joint pain, serious foot pain that mimicked plantar fasciitis, eye inflammation, weight loss, inflamed eye lasted about two or three years despite seeing a dozen doctors for these various symptoms with no one having a clue what was actually going on. Only when the Wegs progressed to lung damage, kidney damage, loss of hearing and balance and extreme fatigue and trouble breathing which led to hospital admission to treat me for a suspected pneumonia, did they even start to try figure it out. By this time I was knocking pretty hard on death's door. My salvation came about only because one doctor thought to send my blood and urine samples to Mayo Clinic and they suggested a 99% probability of Wegs which quickly resulted in a transfer to a University Teaching Hospital where they knew how to treat Wegs. If I had know about the Find a Zebra web site I might have suspected this diagnosis much earlier and saved myself a lot medical treatment and Weg damage. I had hand surgery at Mayo Clinic when my joint pain was just beginning to occur and had thought about asking them for an evaluation of my strange joint pains but didn't follow through with it.

It seems reasonable that stress levels, infections, other illnesses may, or even should affect the severity and progression of Wegs and the occurrence of Weg flares. I believe the longitudinal study of hundreds of Weg (now GPA) patients currently underway is looking at some of these variables and we might know more in a few years.

Thank G-d they figured it out when they did. I wish it had been sooner. I also had symptoms, albeit different ones, for many years before Wegeners became a serious suggestion, although it had been queried/mentioned a number of times and purportedly 'ruled out' (which I now believe meant, more accurately, "it may be smouldering but is not rearing its ugly head enough for us to diagnose and treat it.") I had been to ENT four times over about six years before finding the one (or perhaps before the symptoms showing clearly enough) for a diagnosis; which still has not been confirmed by my rheumatologist or other docs.

[ingemlb]

Thank you DRZ and Lisa. This clarifies it a lot more for me. When they first thought I had Churg Strauss I read that it came in "stages" and the time period of the stages they suggested seemed to fit with my pattern of illness. Maybe all Vasculitis comes in stages but not so clearly defined. I had symptoms with Sinus issues going back to the late 1990's then 2001 post nasal drip and 2002 the nasty cough that lasted for years with a lot of phlegm in the bronchials, recurring acute infections then was told I had fibrotic tissues in the lungs, fatty liver etc. 2005 the sudden neuropathy. Bowels had been playing up for years. However from 2007 I started a trial protocol which settled things down for a while then 2009 it all started to go haywire with eye inflammation and knee inflammation which was very painful then the bowels became nastier. Then 2010 the stomach ulcers were diagnosed and downhill from then on but the worst started early 2013. So it seems like a very long stage before diagnosis now on retrospect and probably the trial treatment I was on did slow thing down for a while and possibly protected my organs.

Guess more will be learnt as more people are diagnosed and we gain more experience with the disease and treatment.