User Tag List

Likes Likes:  0
Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: New member from Australia

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Feb 2014
    Location
    Melbourne, Australia
    Posts
    387
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Unhappy New member from Australia

    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.

  2. #2
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Inge, wow! What a familiar trip...so sorry you're having to deal with it. You are on a similar protocol to mine...I also have a 'lite' case, whatever that is...it's still scary! The shock is a part of it all too...this too will pass as you follow the protocols, etc. Lite simply means your lungs and/or sinuses were the only or most affected of organs in the body. You seem to be on the correct drugs and they seem to be working. I'm 2 1/2 years down the road, it's a bit rocky at times, but feeling better and back to my old self at 65...it's the 'new normal' for most of us. Please share, ask, vent, etc. on here as much as you please. We all learn a little more as people contribute each day. Best to you...stick with it...life is good!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #3
    Join Date
    Feb 2014
    Location
    Melbourne, Australia
    Posts
    387
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thank you Don. Sounds like this disease caught us around the same age. Yes in my case the problem is in the Sinus and apparently in most mucous membranes like the mouth the stomach the bowels. Also getting strange clusters of spots some in a straight line some in a group of 3 or 4 on my skin. But they have been coming and going a while now. Just noticed one new line of them and nurse seems to think it looks like a leakage/breakage of tiny blood vessels in the skin. Makes sense given the Vasculitis I guess. Then the eyes. But lungs, heart, kidney and liver are all good. What I am noticing is sudden onset of new symptoms. Like I have a pain under my right heal that makes it hard to walk, also my left ankle is very sore. What I am not sure of is when these parts are sore is it important to rest or should I try walk against the pain. Probably should be asking these questions in a different thread Also the pain in the upper right arm and shoulder is getting stronger. Not sure if these symptoms are getting worse because on Wednesday they reduced the Prednisolone from 30 to 20mg. Maybe the 30 were only just keeping things in check. It will take a month for the Methotraxate to take over but I believe weaning off Prednisolone is not an easy thing to do and hence would rather to have to go up again.

  4. #4
    Join Date
    Oct 2011
    Location
    near Phx, AZ
    Posts
    1,809
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default

    Really sounds as if you are flaring inge...roaming pains, purpura...get thee to the doc! Your pred should probably go up...but do see the doc!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  5. #5
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Inge,
    welcome to our weggie family.
    I am sorry for your long road of suffering, it is time to start feeling better !
    I have WG with colon involvement. it is rare. I went to couple of gastro-docs, untill I found one, old and experienced, that told me that it is wg in my colon. I also did calprotectin test which turned out positive. it helps for diferential diagnosis between IBS and IBD. my IBD is wg-induced according to my doc.
    the gastro doc said that it is similar to crohn, if looking through colonscopy. I didn't do one, feeling too weak to stand it, and my doc said that it is not necessary.
    my treatment : pred, mtx, rtx, helps my colon symptoms as well. when I flared, the colon is also in bad shape. it means lots of diarhea and strong pains in my stomach.
    still, I am keeping very strict diet, eating almost nothing, otherwise I am in trouble.
    what treatment are you going to get ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  6. #6
    Join Date
    Feb 2014
    Location
    Melbourne, Australia
    Posts
    387
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Alysia. I didn't notice your post until now. Its interesting to hear from someone with WG induced IBD because my Gastroenterologist (who I have only been seeing since being admitted to this hospital 4 weeks ago) was convinced it wasn't Crohn's right from the start and after the diagnosis told me she is certain it is all related to Wegener's. My main symptoms re the colon in the last re months have been the most aggressive diarrhea (I was hospitalised with dehydration after 1 day of diarrhea and spent the entire week averaging 20 visits a day to the toilet) sometime before it starts I get some mild gut pain some bloating and wind but nothing like the severe pain I used to get with bowel obstructions and partial obstructions. And the Gastroenterologist doesn't think I would be able to cope with bowel prep right now and she is right because I have had about enough diarrhea. I fixed the diarrhea eventually by sticking to a BRAT diet which meant for me I ate only bananas, apple sauce , burnt toast and mashed potatoes (no additives) they also allow white rice. Then later i added a bit of steamed chicken (skinless breast) and eventually ate a lot of chicken noodle soup. I learnt that the bananas and apple sauce and mashed potatoes work a bit like yoghurt and restore the good flora in your gut. Anyway it was the only thing that stopped the diarrhea in it's track. Still eating daily bananas and apple sauce as I am scared of a relapse
    The treatment they have me on is prednisolone (just increased again from 20 to 25 mg) and since Wednesday 10 mg of Methotraxate once a week. They want to go up to 20 mg and then drop the Prednisolone if I can manage without. At the moment i don't have any bowel flare up.
    Do you also have stomach ulcers? for the time being I will assume they too are Wegener's and maybe down the track have another gastroscopy to see if the Wegener's treatment fixed those.
    Thanks for sharing your info. Keep me posted how you progress. As I have had bowel issues for so many years and as the ulcers are a real worry I would be interested to hear how your treatment is improving the situation. Thanks again. Inge.

  7. #7
    Join Date
    Feb 2014
    Location
    Melbourne, Australia
    Posts
    387
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Don. Finally got to see the Doc (weekend a bit harder). The main doctor I am admitted under is my gastroenterologist. I told her about the pain and that people in this forum are saying potential flare or too rapid withdrawal of the Prednisolone. She rang the Rheumatolgist and they agreed to bump up the Prednisolone to 25 mg from 20. So I just swallowed the extra 5 mg. Hopefully it will quickly show if it was the Prednisolone. Inge

  8. #8
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome, Inge. It all sounds like such a nightmare and so familiar at the same time. It is true that Wegs can sort of "smolder", even for years, and then lash out, at which point we may be diagnosed. That happened to me and many others on here. Funny, my ENT also called me a "mucus factory", long before anyone had an inkling of my Wegs, because of all the sinus issues I was having. It does sound odd that they are calling it "lite", yet you are still in the hospital after 4 weeks. It sounds to me like you could be getting hit a little harder with both the MTX and the pred. But Michelle says you are in good hands and I believe her.

    In any case, if you have to have Wegs, I'm glad you are here. This is a great community of great people for all the support, information and friendship you could possibly hope for. I don't know what I would have done without it these last 3 years; I would certainly be pretty much in the dark. By reading our experiences on here, you will get an idea of what to expect, and it is likely something a lot more positive than you might have thought. Take a cue from Don, who pretty much feels like his "old self" after a couple of years. And many of us are doing pretty well at carrying on with our lives once we have received effective treatment.
    Anne, dx'ed April 2011

  9. #9
    Join Date
    Feb 2014
    Location
    Melbourne, Australia
    Posts
    387
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks Anne for your encouraging message. Yes I am getting the idea I need to stop worrying so much lol. It's all a bit scary. And to boot I am scared of how I will manage from home. Like here, doctors see you every day. They may not be the primary specialist but they all react and get things done. Like the Gastroenterologist when I mentioned this forum and advise that maybe I am on too low a dose of Prednisolone hence the pain returning got straight onto the Rheumatologist by phone (it's Sunday) and within 5 minutes i was swallowing an extra 5mg of Prednisolone. How will that all work when I am at home and symptoms are flaring? Guess I need to have that discussion with my Rheumatologist who will be the main specialist treating me. Glad I am here too. Certainly makes it easier to learn from others in the same boat Thanks again Anne.

  10. #10
    Join Date
    Apr 2013
    Location
    Orlando, Fl
    Posts
    742
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Welcome Inge, This is a great place to get information and meet wonderful, supportive people. Take some time and go through the archives as there is a wealth of info there. As Don said this is great place to ask question, share what's going on with you and vent if you need to, Best of all we understand what you're going through, the pain, the fear, and the uncertainty. We've been there so we get it. You will find this forum to be a wonderful support group during this time.

    With that being said is it possible that you've had the disease longer than you thought and was misdiagnosed? It sounds like it could have happened. There are many on here that were misdiagnosed in the early days of the disease. Also the term limited is falling out of use now. Like Don said it refers to where your disease is located. New thinking is you have it or you don't. Best of luck to you and I hope you get out of the hospital soon. Keep us posted on your progress. We love notes from the hospital........Hugs to you Here is link to a wonderful information guided about Wegener's. It is put out by the Vasculitis Foundation. You may want to peruse their web site while there. Patient Information Book
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


Page 1 of 2 12 LastLast

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •