Hi All. Not quite sure how I go about introducing myself here. I was diagnosed with Limited Wegener's Granulomatosis on Tuesday evening and started treatment on Wednesday. Until recently I had never heard of the disease.
I am 63 and have been suffering with many Chronic Autoimmune diseases during my life. Most of the were well under control and then in 2009 new symptoms started to set in or old symptoms started to change.
From 2001 my sinus issues became worse and I developed post nasal drip and it appeared like i became a mucous producing machine.
From 2002 I developed a chronic cough and chronic bronchitis. the cough was an asthma like cough taking my breath away. I now felt like I was mass producing mucous in the sinus area and the lungs. My family doctor then said I had developed a chronic cough and chronic bronchitis and had to learn to live with them. It took many years until I found a pulsed antibiotic treatment that gave some relief. Nobody every checked if the cough was Asthmatic but I was often scared for my life. They prescribed inhalers and I slept on 5 pillow so as not to drown in my own phlegm. After that I went through a few years of many acute infections until it was decided that my immune system was in trouble.
2005 I developed overnight patchy numbness in my feet. It was diagnosed as Diabetic peripheral Neuropahty but I wasn't diabetic.
2009 First new symptom were recurring corneal ulcers or inflammation. As I and other immune system diseases I was in treatment for I never really got to the bottom of what caused the eye issues. The opthalmologist mentioned Sjogrens's Syndrome and as I had always had dry lips and occasionally a dry mouth it seemed to fit but I never followed up if that was a correct diagnosis. Since then the eye problems especially very red eyes often on waking have continue to come and go. When it gets to an ulcer stage I spend a few days in a dark room and take pain meds and eventually it goes away again. I use cream gel every night as it was thought that the ulcer came from repeated tearing when the eyes were glued shut during sleep.
2010 I had a routine colonoscopy and Gastroscopy. Background is that I have been suffering from bowel obstructions for many years and sometimes they appeared to be caused by adhesions other times put down to IBS. Then during the colonoscopy the surgeon discovered an inflamed ileum and mentioned Crohn's but again I never went to a Gastroenterologist to have this verified or explained. The eye specialist mentioned on the next visit he didn't think in my case the eye problems were linked to Crohn's. The surgeon also found 2 bleeding gastric ulcers which appeared to be due to Helicobacter Pylori and I had 2 doses of the usual antibiotic treatment and the ulcers healed.
Later in 2011 I ended up with severe pains in my left knee. Diagnosed as a torn meniscus in the left knee, bakers cysts in both knees and arthritis in both knees. Hydrotherapy, then swimming and eventual gym work got rid of the pain and I avoided surgery.
Then in 2012 during another colonoscopy/gastroscopy the acute inflammation of the ileum appeared to be gone however I was told the surgeon's instruments didn't reach far enough to check the entire ileum and he suspected inflammation further up as the colon kept going into spasm during the polyp removal. he also found now that I had my stomach wall lined with chronic ulcers this time no helicobacter so i was not told what could be causing the ulcers. I was also diagnosed with Barrett's Esophagus and that explained the years of gastric reflux so was put on Somac each day to dry up the stomach acid.
Early 2013 my sinus issues changed again. Now I felt for the first time that my sinus' were blocked and I had a daily headache that lasted until October when I underwent sinus surgery. The surgery removed polyps, removed extensive diseased sinus tissue, widened passages. I was told it would take a while to heal. However after the surgery I started each day clearing scabby crusty mucous out of my nostrils. Big blobs of it. I assumed the scabs were due to areas healing that had been cut by the surgery and as I was told it would take a while to heal I didn't go back to the ENT specialist.
The other symptoms that set in during 2013 were joint pains. My right hip kept going on me. The pain would sometimes only last minute other times hours. There seems a weakness in the hip and sometimes out of the blue I almost fell.
Then my right shoulder and upper arm started to hurt on certain movement. Knee pains also came back. None of these joint pains were constant however during a 2 months trip to Europe I felt myself on pain meds every day to overcome headaches and these joint pains so I could actually move around. But movement was very difficult.
On our way to Europe both my husband and I came down with some nasty flu-like virus. We had taken antivirals and antibiotics with us so we took those. Both of us had fevers and painfully swollen glands. I overcame mine within a few days but my husband was sick the entire 2 months. On our return from Europe in late june I developed severe diarrhea. No nausea. no gut pain. It took a week to clear up and was to return for short periods the rest of the year. The worst attack came a moth after my sinus surgery and I ended up in hospital. Tests were done but no viral or bacterial infection found. I was referred back to my bowel surgeon who said it didn't present like a Crohn's flareup more like an infection or virus and told me I was not giving my body enough time to recover with all these trips away. My mother was dying in New Zealand so in between I had three trips to NZ and each time had flareups of the eye ulcers and the diarrhea and the joint pains.
Then the day after Christmas things came to a head. I started with a very painful inflammation of the left wrist. It was also swollen. The next day I noticed 3 small crusty sores on the wrist which to me looked almost like some kind of spider bite. The pain had moved into the index finger. The wrist was fine now. The pain in the index finger never changed and the fingers looked like the knuckles were swollen and the index finger was swollen too. Then I had shoulder and upper left arm pain which would start late in the afternoon and continue through the night until late morning. Some days it was accompanied by chest tightness making me wonder if I was having a heart attack. The pain then moved to the right side and now it started to accumulate rather than move. Soon I had both hands and wrists almost crippled with pain. both upper arms and shoulder next the knees and then the ankles and feet. I swallowed whatever I could get my hands on as far as pain killers went. Tramadol, Oxycodone, Paracetemol. i couldn't take NASAIDS because of my stomach ulcers.
Finally it all got too much for me and I ended up in ER and was immediately admitted to hospital where I am still now nearly 4 weeks later.
Lots of blood tests, x-rays, CT scan's, MRI's, Lung Function tests, Bone density scan, full body scan's, nerve conduction tests,urine tests and stool tests later it was decided I was suffering from some rather severe Vasculitis that needed immediate treatment with Prodniselone to protect the joints and calm down the immune system. Finally the joints started to recover and the pain responded to pain management. By this stage I was getting regular morphine injections on top of all the other drugs. My hands were the first to heal and are practically back to normal.
Now came the big search as to what kind of Vasculitis we were dealing with. Anca tests proved positive which gave some clue however the Rheumatologist expected to see major organ involvement at this stage in the game and my heart, lung, liver and kidney were normal. My ENT specialist checked my sinus and showed me how nicely he had cleaned up during the operation however noticed that there were new channels of inflammation. He told me it happened only once a year max that someone didn't get healed after the surgery and then he would find out it was usually Wegener's that was causing the inflammation. However the biopsy came be as inconclusive. The Rheumatologist was looking for the presence of granulomas which we have so far not found anywhere. i am still blowing out bloody scabs each day. First I thought maybe from the biopsy but now am beginning to realise it's probably the Wegener's. Sometimes after a big blob of scab comes out it is followed by bright red blood. I forgot to mention that on arrival at the hospital I had also developed a massive ulcer on the side of my tongue. It too was biopsied but again inconclusive inflammation.
The Rheumatologist first thought I was suffering from Churg-Strauss however the inflammation markers said Wegener's. He called on a colleague who was also an Immunologist to examine me for an independent assessment. They didn't discuss my case before the examination. The new Professor had no doubt about this being Limited Wegener's given the blood blood tests and clinical picture. He said Wegener's does't always present the same and if it is indeed limited Wegener's I stand a good chance of remission. However the jury is still out as at the time I landed here I had been 7 years on a treatment which helps the Immune System and which protects from Organ damage so I have no idea if this treatment slowed down the progression of Wegener's or if Wegener's is a totally new disease that hit me sometime last year.
My symptoms are all these bits of ulcer and inflammation in the gastric tract. Nobody every examined what's between the stomach and the Colon. I have the recurring eye redness and ulcers, the tongue ulcers the nasty sinusitis with its grainy massive amount of mucous, some remaining cough but we are not sure if the stuff I am coughing up (yesterday was some blood in the sputum) isn't simply from the sinus and post nasal drip as I don't have a sore chest. The tongue ulcer is very nasty and hasn't shrunk. The Vasculitis appears to be in retreat.
I was on 30 mg of prednisolone that was dropped down to 20 mg on Wednesday and once a week I get 10 mg of Methotrexate which will increase to 20 and then the idea is to wean off the prednisolone and hope that this can all go into remission.
Well that's a mouth full but that's my story. I am totally confused as to where to from here. What to expect. How long I have had this disease. How the Limited differs from the not so limited. I will probably be discharged from hospital next tuesday if everything remains stable. Not quite stable as I still have some joint pains and still am on heavy pain meds. My insulin is at 20 units a day and we hope that will reduce as the prednisolone reduces.
I joined this forum to find out how others function with this disease and to educate myself as good as possible.
Thank you for any advise / tips and support you can give me.
Still in shock. Inge.