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Thread: Hello from Calgary, Alberta, Canada

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    Default Hello from Calgary, Alberta, Canada

    Hello All

    I am new to this forum and I am not even diagnosed with Wegener’s Granulomatosis. In fact I am not really diagnosed with anything specific. My Diagnosis is “Autoimmune Lung Disease with a component of Vasculitis”. I am hopeful that I might get some answers in this forum. I will start at the beginning of my story. My apologies for the length of the “story” but I feel I need to include everything I can remember and think is relevant.
    In March of 2013 I start to notice that I was having some difficulty with shortness of breath. This continued and worsened until the middle of March when I went to a local walk-in clinic and was told I had a cold and was given a prescription of Amoxicillin. I took the prescription and it did nothing for me which was not unusual because Amoxicillin does not ever work for me. On the 6th of April I just could not breath properly anymore and my boyfriend took me to the emergency department of the hospital. While there the standard blood test and chest X-Ray was done. They said they needed further test and did a CT Scan. Upon checking it they noticed I had what they called shatter glass or ground glass nodules. They called another hospital that had a Pulmonary Doctor on call and sent me to that hospital to be admitted immediately.
    I was put on 50mgs of Prednisone and I spent a week on the hospital. During this time many blood tests and X-Rays were done and eventually a Bronchoscopic Biopsy was performed on my lungs. After this I was discharged from the hospital to await the results of the Bronchoscopic. Sometime in this time frame an ANCA blood test came back positive for Wegener’s. It was also during this time that I mentioned to Doctor that I had rash on my lower back/butt. I had thought it was Psoriasis, which I do have, primarily on my hands and feet. I was told it was Shingles.
    The Bronchoscopic biopsy came back inconclusive. Doctor decided I needed an Open Biopsy to confirm Wegener’s as Doc wanted a 70% confirmation. This biopsy was finally scheduled for May 15, 2014 and I was told to stop prednisone 2 weeks prior so it did not interfere with the Biopsy. This also came back inconclusive. It showed I had past Vascular activity but it was not currently active. Further blood work (ANCA) tested negative for Wegener’s. Biopsy was referred to three different Pathologist for review and they could not diagnose me!!
    I continued taking 50mg of prednisone and continued to see my Pulmonary Doctor every month. In August I was given the OK to start tapering the prednisone doses to see what would happen. I did this and was finally off prednisone by Christmas! Ya! Not! I hurt so bad that the Doc figured my adrenal gland was not making the naturally occurring steroid and I had to stay on 5mgs.
    About the second week of March 2014 I knew that whatever I had was coming back. I went to see Doc and sure enough x-rays proved me right and I had to go back on 50mgs of prednisone. I was also referred to a Rheumatologist. It had this appointment at the end of June 2014. During this appointment I saw 3 different Doctors and was told I have Wegener’s (mild case), Fibromyalgia, Irritable Bowel Syndrome, and Psoriatic Arthritis (mild case). I just figured I was a walking disease! Their suggestion was that I start taking Cytoxin along with the prednisone. My Pulmonary Doctor agreed that I should take the Cytoxin. I did not want to take it because I had done research on it and knew it had a lot of bad side effects. I still did not have the 70% confirmation of Wegener’s that Doc said I needed. I asked for a second opinion and was referred to another Pulmonary Doctor. In August I developed a rash and also had a urinary infection that took 2 rounds of Antibiotics before it would go away. I should also mention that for the past 15 years I struggled with sinus infection and from the onset of this illness I have had several sinus infections.
    During August, with Docs permission, I started to taper off prednisone once again. About the middle of September I discovered I had Type 2 diabetes as a result of the prednisone and weight gain(50 lbs) and my blood pressure, which was already high before unset of this "disease" was high and I had been on meds for, was skyrocketing.
    I saw the Pulmonary Doctor that I was referred to at the beginning of October and she ordered a CT Scan, sinus x-Ray, chest X-rays and blood work. She also told me to continue the taper off prednisone and see my family doctor to get diabetes and blood pressure under control; I am still struggling with this. I saw family Doc on Oct 21st and was put on 500mgs Metformin for diabetes, and 25mgs Hydroxyzine for rash.
    I returned to see second opinion Pulmonary Doctor on October 30th. At this time the rash I had started getting in August was almost unbearable (itchy). Doc referred me to a Dermatologist. Doc told me that after reviewing all my past and present test and having a conference call with the Doctors that were involved in my case (first Pulmonary Doctor, Pathologist, Rheumatologist etc.) they still could not specifically diagnose me but decided to call it "Autoimmune lung disease with a component of Vasculitis". The suggestion was that I go on 50 mgs of Imuran for the first 2 weeks then go up to 100 mgs. I was also told to stay on 25mgs of Prednisone for a month then continue to taper at a rate of 2.5mgs every 2 weeks. I did some research on Imuran and last week contacted Doc insisting on TPMT genetic test to see if I should take it. Doc had not heard of this test, researched it and said I could have test if it would make me feel better. I am awaiting test before starting Imuran.
    I saw Dermatologists on Nov 5, 2014. She did a skin biopsy of rash, increased the dose of Hydroxyzine at night and added a daytime antihistamine for during the day. I'm awaiting results of skin biopsy.
    As I said at the beginning, I am sorry for the length of this post but if any of this sounds familiar and you can give me some insight I would greatly appreciate it.
    Becky

  2. #2
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    Hi Becky and welcome to the forum.

    There has to be someone on here that can relate to what you are going through and give you some more direction.

    You don't ever need to apologise for the length of a post.
    By putting everything down now, at least you have something to look back on later (when you are feeling better) and say, WOW I got through all of that.

    Best of wishes to you - I'm just sorry that I can't really offer any help
    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

  3. #3
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    Welcome Becky, this is the right place for your questions and comparisons. Just off hand (the pseudo scientists on here hate that!! LOL!), I believe your docs are fumbling the ball right now. Nice title for your disease that they won't make a decision on for you! C'mon, they're guessing at least and reading a book on AIs at best...your doc didn't know the test to clear you on Immuran? Really? Your story is waaaay too familiar on here, many peeps have had pseudo (my word today!!) dxes and the docs missed the boat entirely for 2 years! Your docs are trying, but you need a WG experienced doc. Your current docs can consult with the Vasculitis Org. if they like...it's made easy for them. If you're close to a major research hospital, they may be able to offer you better care also. Best to you, hang tough, be proactive!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi. I sent you pm.
    I was with my sweet Phil on "Foothills Medical Center" in Calgary, almost 3 months, and I got to know many docs there.
    The only truely decent, devoted, worth pulmunary doc (I can say a "saint") is dr. Paul Maceachern. in the long run he was the only one we could trust. others were of all kinds, some good, some worse, most of them were too "full of themselves" to be enough attentive...
    I have heavy claims against that hospital and I suspect that they killed my sweetie with malpractice and neglect.
    worth vasculitis docs are not in that hospital but in another one in the city. I have a weggie friend on facebook who has good doc and I can connect you with her.
    as for your description, sounds like wg to me. dont build on anca to be positive. its one of the mistakes of the docs in Foothills, looking only on numbers and not enough on symptoms... too narrow minded....
    btw, IBS might not be so, but a colon involvment of wg. I have it.
    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.

  5. #5
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    Welcome, Becky. You do need a WG specialist and not so many different opinions, and someone that can give you a definite dx. In addition to the Vasculitis Foundation and its list of specialist consultants, VF Medical Consultants , there is a consortium of vasculitis specialists in Canada called CanVasc or something like that; do a search, and I think there is a member in Calgary who is a vasculitis doctor. With ground glass nodules in your lungs, calling it "mild" Wegs seems a bit questionable. From having lung involvement myself, I know that Cytoxan is a good way to clear up WG involvement in the lungs, fast. It worked for me. I was on the CTX much longer than I probably should have or needed to be, I realize in retrospect... could have been switched to a milder drug sooner, such as the methotrexate I'm now on, or Imuran. Some would recommend you be on rituxan (RTX), a different kind of drug given in infusions, and very expensive. Don't know how that works in Canada, as far as getting approval for it. But if you end up on CTX, don't worry, just focus on getting better, take it in the morning and drink LOTS of water to minimize future risks. It will make you feel sicker at first but that will pass as you get used to it. Good luck with everything, and let us know what happens! Finding the forum is a big step toward dealing with your situation. We are here for you. And don't worry about long posts! They happen.
    Anne, dx'ed April 2011

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    Thank you for the replies and support. It is helping already. I really am not crazy for wanting a definite diagnoses and insisting on more test than they have offered.
    I am still waiting for results of skin biopsy and TPMT test. Hopefully they will have these after the weekend and I will call each Doctors office to check. I also have an appointment on November 24th with my first Pulmonary doctor and I plan on asking him for referral to a second rheumatologist that I saw on the CanVasc site who has experience with Vascular disease.
    I guess that is a question I have been wondering - should a Rheumatologist be more involved in my treatment? The first one I saw basically did his evaluation of me that took about 1 1/2 hour in total and that was the last I saw of him. He said I had all kinds of things wrong with me that I did not believe half of it, but there was never a treatment plan.
    i guess another thing I have been thinking about is - if my lung biopsy showed past Vascular activity, would that not tell the Doctors that I have a Vascular Disease that may be in remission and maybe is coming back, or that the prednisone they had given me may have affected the biopsy? And, maybe they should realize that I need a Doctor that specializes in Vascular Disease.
    Some of this past year and a half makes me very angry. Because of this illness and lack of proper diagnoses and treatment, I have lost my job, missed or was limited in my participation in important family functions (my son's wedding, birth of 2 Grandbabies, spending time with my Grandchildren, etc). Not to mention the roller coaster of emotions of not know what I have and will I live and what I should do. And all this when I feel like crap and don't know from one day to the next how I will feel because one day I could be feeling not to bad but the next I don't want to get out of bed. And no one seems to understand it and think it's just laziness or depression and thinks I just need to get out and do something and I will feel better. And maybe I should lose some weight (gained 50 lbs from prednisone) and I will feel better because that extra weight is probably making it hard to breath.
    There, I am glad I got that out. Now I feel a bit better. Sorry for that but I guess I am feeling comfortable here and able to vent.

  7. #7
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    You can vent as much as you need to on here Becky.

    You know, someone said to me yesterday that being on a rollercoaster is a good thing.
    You may be at the bottom now, but the only way is up
    ........unless you fall off the rollercoaster - and then that's not a good thing.
    However, whilst you are still on the rollercoaster, you have hope and also some upward momentum to look forward too

    We all can associate with the weight gain, but it does get better.

    Here's looking at lots more up days for you
    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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    I totally understand your frustrstion and anger.... especially about Calgary's docs.... I was raging when I was with my sweetie at Foothills..... he used to tell me: 'I am glad you are by my side'. You deserve to have good dr. & treatment and its too sad that you have to fight in order to have it.... you have us with you all the way.
    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.

  9. #9
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    Hello from Edmonton and welcome to the forum! You will get lots of support, information and loving here. I agree with Alysia, Colins doctor (out of the U of A) doesn't pay too much attention to the anca results. Symptoms and biopsies seem to be more definitive.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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    Quote Originally Posted by Allisonquast View Post
    Hello from Edmonton and welcome to the forum! You will get lots of support, information and loving here. I agree with Alysia, Colins doctor (out of the U of A) doesn't pay too much attention to the anca results. Symptoms and biopsies seem to be more definitive.
    i should point out that I'm not the one with Wegs, it's my husband. He has lung involvement, sinus and kidney with no permanent damage. He got sick in May 2013 and was diagnosed by mid June via a lung biopsy. Cyclo and pred, now he's just on immuran and doing well. Had a set back in January collapsing from a huge pulmonary embolism ( Wegs related ), had open heart surgery and now on blood thinners for life. This is a wacky disease that demands constant monitoring and education. Good luck with a diagnosis.
    - You can judge the character of a person by how they treat those who can do nothing for them.

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