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Thread: Newly diagnosed with wegeners

  1. #21
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    Quote Originally Posted by melbourne andy View Post
    hi folks
    I have just been tentatively diagnosed with wegeners, the rheumatologist I am seeing wants to do a nasal/sinus biopsy to make certain, but he is pretty sure it will turn up positive.
    it all started at the beginning of October last year with pancreatitis, this put me in hospital for a month and off work for 3 months, however there was no cause found, no gallstones or alcohol so they put it down to a virus that I may have picked up, this was quickly followed by a sinus infection then an ear infection then scleritis of the eyes, this put me back in hospital for a further 2 weeks, this was about 8 weeks ago, it was mentioned at the time that it could be an auto-immune disease, nothing more was mentioned about it, then about 3 weeks ago I had to go and see my diabetes nurse who went through my recent run of bad luck and mentioned I have vasculitis to which I replied no I don't, it turns out that the hospital ran the tests but failed to notify anyone of the results, my normal GP was not happy about this and sent me to the rheumatologist who I must say has bent over backwards to help me, he has spent the last day trying to get me in for either a CT or biopsy of the nose ASAP.
    I am currently on 20mg of prednisolone a day, any less and my eyes start to play up again, the rheumatologist wants me off them because of my diabetes.
    I have done nothing but read up on this disease over the last week, lots to take in.
    Welcome to the forum Andy,

    Sorry for the run of bad luck, but it seems like it's about to change and you can get on the road towards 'normal'.

    I am not a doctor, so take everything I say with a grain of salt, but here's my two cents. The symptoms you describe sure are in line with WG. Also keep in mind that nasal biopsies can give a false negative because the biopsy has to actually snag a granuloma for it to come up positive... and unless you're littered with them, it could give a false negative.

    Also, prednisone is part of the only treatment in history that can actually halt the disease progress. You need the chemo PLUS the steroids for the desired effect. Before this treatment protocol, more than 80% of patients perished, so the rheumatologist needs to consult with other Vasculitis specialists to ensure that he's not taking away a treatment that might be the one keeping you alive in the next little while. Make sure your rheumy has some experience. I was told this at the start of my WG ride, and remember being upset about it because people didn't understand my geographical limitations to getting a doc with experience, but as it turned out I did need to do that because the rheumy I was under almost killed me with his inexperience. I now have a fantastic rheumy who is actually a Vasculitis specialist, so I trust her completely.

    It's hard stuff to do at the onset, but might be what makes your healing process shorter and less painful if you nip a few things in the bud right at the onset.

    Best best best of luck Andy,

    marta

  2. #22
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    Hi Andy,

    I'm not sure on the Frankston hospital. I wonder if you can get to Monash as they have now created a specialised Vasculitis clinic.

    If you are on facebook, we also have a WG/GPA Group for Aussies and Kiwis. You can check us out on the link below.
    We have a couple of members from down Frankston and the Peninsula way.

    I hope you have had a better weekend

    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

  3. #23
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    evening all
    well the rheumatologist has put me on methotrexate, start on 10mg a week then if no side effects for two weeks up to 20mg a week, he said hopefully in approx. 3 months he can start weaning me off the pred, I have to have blood tests every 4-6 weeks just to make sure my liver is doing ok and to keep an eye on things.
    also went to see the ENT specialist today they will be doing the sinus biopsy in the next 2 weeks, he said it will be an overnight stay in hospital, so at least I get a break .
    I did ask the rheumatologist would it change his diagnosis if the biopsy came back negative and he said no, he said it is just the icing on the cake so to speak.
    so things are moving along quite nicely at the moment, I still have the odd bit of pain and discomfort in my eyes but it is manageable with pain killers instaed of upping the dose on the pred.
    hopefully I will start to see the benefits of the meds over the next couple of months and start to feel better/normal what ever that is , trying to stay positive through all this as it is a lot to take in and not knowing what the future holds, but hey ho life goes on.

  4. #24
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    I'm glad things are moving along, Andy. I'm sorry your sinus biopsy has to be a bigger deal than mine was. I hope the results will provide some resolution, if you do have WG, which it sounds like you do. Your case sounds so much like mine, with the sinus and ear stuff, and eye discomfort, but you are getting a much bigger jump on things, since my dx was so delayed due to no one getting a clue it could be WG. It took the disease going into my lungs in a pretty scary way for them to finally figure it out and treat me properly. Since you haven't mentioned lung involvement, perhaps you can avoid that altogether! From your reading and research you probably know that the kidneys are another major area of concern, and that you'll be regularly monitored for that through your blood tests. Quite a few of us have been lucky enough not to have that so far, but we must remain vigilant throughout our lives. Best of luck in your recovery!
    Anne, dx'ed April 2011

  5. #25
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    good that you are getting started with the MTX. I think that titration is pretty standard; I believe I started with 10 mg injectable per week and after a while was up to 25 mg (or 1 ml). It's been very effective for me and many others. I hope you find any side effects minor and tolerable and that you get a good start on remission very soon.

  6. #26
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    Quote Originally Posted by Alaskatom View Post
    good that you are getting started with the MTX. I think that titration is pretty standard; I believe I started with 10 mg injectable per week and after a while was up to 25 mg (or 1 ml). It's been very effective for me and many others. I hope you find any side effects minor and tolerable and that you get a good start on remission very soon.
    really? I had pills i took every Friday.....knocked me down for a bit but i usually recovered with a nap. I am a fan of MTX in general I had very minor side effects. I know it tends to lead to body hair loss, and lushes eye lashes . I know a weggie dancer who ended up needing a wig but it all came back thicker and curly after.
    Experience is the only way to survive. <3 Rini Orange

  7. #27
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    Hair thinning or hair loss can occur. Folic acid, which is often prescribed along with MTX, can counter that. After things stabilized for me the hair thinning seemed to stop, but it still grows much more slowly than it used to. Definitely saving money on haircuts.

  8. #28
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    Hi Andy,

    I have had wegs dx about 8 years ago, but docs think I have had it much longer. I was dx with the nasal biopsy also, mine was like Anne's. I have just been told I have pancreatitis. I am waiting on the last test, which was an ultrasound to see if maybe I have a stone. I am wondering if it the wegs and if so how they will treat it. I am having trouble with my blood pressure shooting up and going to low. I am wondering if you had that issue with your pancreatitis?

    This is a wonderful site with lots of helpful people. The moral support is needed along with learning from others life with wegs. I hope things are going better now. I am also on MTX and pred. overall doing well now until this pancreatitis started in.

  9. #29
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    Morning Jake Kell
    Unfortunately it depends on how bad the pancreatitis is, I had blood pressure and heart rate problems, everything was too high, the pain was excruciating, the only thing that gave any relief was the morphine direct to the stomach.
    It can also cause lung problems as well, it is not something to be taken lightly, I would not wish it on my worst enemy.
    I am just starting to get over mine, it has took nearly 12 months, but they do think mine was the first symptom of my wegeners disease.
    I hope you get better quickly and it is only a mild case.

  10. #30
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    Quote Originally Posted by melbourne andy View Post
    Morning Jake Kell
    Unfortunately it depends on how bad the pancreatitis is, I had blood pressure and heart rate problems, everything was too high, the pain was excruciating, the only thing that gave any relief was the morphine direct to the stomach.
    It can also cause lung problems as well, it is not something to be taken lightly, I would not wish it on my worst enemy.
    I am just starting to get over mine, it has took nearly 12 months, but they do think mine was the first symptom of my wegeners disease.
    I hope you get better quickly and it is only a mild case.
    Thanks much Andy sounds like you have been through a lot, mine only has been about 8 weeks. I just got an e-mail on my last test, which are all coming back in the normal range. I am feeling better, now if I can get the blood pressure under control. I wish you the best and keep us in the loop as to how your doing.

    Thanks Mary

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