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Thread: New member from Australia

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    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.

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    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


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    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.

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    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


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    Thank you Cindy. That's what I hope to unravel. Is this a new disease and if so which was the first symptom or has this been in the background all these years that I have been struggling with all sorts of issues that were never formally diagnosed? Can you have Wegener's for years and still have your vital organ's intact? Can it lie dormant and then suddenly lash out? What sent me to the ER was the unrelenting excruciating joint pains in my entire body. This and the blood markers resulted in the Vasculitis diagnosis and treatment was started rapidly within days of arriving at the hospital, mainly with Prednisolone. But that has helped the joints. Then the formal diagnosis of Wegener's and treatment changed a few days ago by introducing Methodextrate. I guess I will have to do a lot of research here to understand this a bit better. I was actually relieved when my Rheumatologist added the "limited" to the front of the diagnosis. It kind of gave me a bit more hope that remission may be possible and that drugs may be able to be kept at a less toxic level. I will take a look at the link you have posted thanks again.

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    Hey Inge,

    What a crazy ride you have been on - kind of like our Big Melbourne Wheel isn't it - going then not going then going again and then broken down

    What hospital are you going to? I go to the Alfred in the City - they have a wonderful team of doctors.

    Inge, if you are also on facebook, we have a wonderful group of Australian's and a few New Zealanders that all share the same problems, like we do on here.

    I'm so sorry that you have to be here but you have found one of the best places to get advice. This is an amazing group of people from all over the world.
    The VF booklet posted above, does help a little bit, however, as we are not in the USA, it is certainly not as beneficial to us as it is to our other friends on here.
    This is why I created the facebook group so that we could talk about local doctors and facilities.

    We are trying to stop the Rheumatologists from using the words "limited" because it certainly doesn't mean that you are having less of a struggle than someone that isn't limited.
    Limited, as Don said, just means that you have, mainly, respiratory WG and not WG affective the kidneys.

    I am on the same treatment as you, 20mg methotrexate (MTX) and now down to 3mg pred (sometimes upping it to 5mg if required).
    There is also the folate (folic) acid that you need to take together with an acid reflux medication and also calcium.
    I also take 400mg plaquenil tablets for RA and MCTD.

    Of course remission is possible and we look forward to helping you gain that status

    Take care and ..........
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Hi Michelle. I ended up going to the Epworth Private Emergency rooms and they admitted me to the Epworth in Richmond where I have been for nearly 4 weeks hoping to go home on Tuesday. I have found them excellent and very thorough and they certainly engaged quite a number of specialists. Afterwards I will be under the care of the main Rheumatologist who diagnosed me here. But I guess I am not yet sure of all that happens next. He has an arrangement with Melbourne Pathology to do the regular blood tests and will see me initially frequently then if I do go into remission less frequently. He is hoping to drop the Pred altogether once the Methotrexate kicks in and hopefully that will reverse the diabetes. I am also on Folic Acid 2x a week. And I have been on Somac which is an acid reflux tablet for several years due to the chronic ulcers and the Barrett's Oesophagus. However I noticed recently have been getting some spasms / indigestion which is like a tightening in the chest so that was probably getting used to the Prednisolone. I take Buscopan and that seems to resolve it.
    I will try and find the Facebook group. Is there a link to it?

    Kind Regards, Inge

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    Excellent hospital, you should be in remission in no time we will keep our fingers crossed for you.


    Below is the link to the WG Aust group.

    https://www.facebook.com/groups/516643745050360/
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Thanks Michelle. That sounds encouraging. Only issue here is they don't have an outpatient department so you have to see all the specialists in their private clinics for follow up. However looks like the Rheumatologist will be managing this going forward. And if I can reverse the diabetes then that removes another department I will have to find out now if I need to more regularly attend my Ophthalmologist and Gastroenterologist and of course the ENT specialist or if I simply continue focusing on the treatment for Wegener's and let that one heal all the other areas? So much to learn!!
    Thanks for the link. I put in a request to join the group.

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    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


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