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Thread: New to fourm- just wanted to talk

  1. #11
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    Hi all - Thank you all for taking the time to reply. I am unsure wether to reply individually or to the thread, so have done both. I went to my local GP and did blood tests to measure my inflammation levels. The results did confirm my levels had increased from my last results and he agreed with increasing my Pred. Will get more blood tests around the 11th prior to seeing my private Rheum.

    I am from Melbourne, Australia. I was initially in the public system, but as described above, he always painted a very 'black' picture so I went private. My private Rheum has suggested I might want to consider Rituximab, as normally MTX is only prescribed for 18 months. My previous Rheum however had advised he normally prescribes MTX for about 5 years if required. I have received conflicting information between the two Rheum, but I know everybody works differently and different people react differently to medications. It appears that Rituximab has just been approved and recognised for treating Wegener's. The information I received was for intravenous monthly for 3 months. My research and understanding is it erases your 'B' cells. Has anybody else undergone or receiving this treatment. Its all just frustrating as I was feeling so good, and then all of sudden flare for no reason.. I have done some research into seeing if diet has anything to do with Wegener's or flares, but have just come across the normal health eating etc.

  2. #12
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    Fiona, hi. Just wanted to wish you, a happy New year, with good health... I just happen to be here, so... Others will reply, and this is out of my league..... As far as a flare goes, I know stress, of any kind does it for me... Physical, emotional, ect... Sorry I'm not much help, but again others will reply..... All the best, Deb.

  3. #13
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    Thanks Deb, Happy New Year to you too, stay safe Fiona

  4. #14
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    Fiona, thank you.. my sister Alysia, will hopefully see this, as she I believe is on rtx , and again others will answer... Take care... Deb.

  5. #15
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    Another Melbournian - awesome or not, sorry

    There are many in Melbourne that have had RTX, actually many in Australia.

    Are you on facebook at all? We have a group for Australian's and New Zealanders that you may find of help.
    It's handy to speak to people from the same area and the same medical system.

    If you are, check us out at
    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

  6. #16
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    Hi Fiona - I was treated with 4 Rituxin treatments once a week for 4 weeks. Also initially IV Solumedrol for 4 days, po prednisone starting at 60 mg and Bactrim DS

    Little itchy with initial dose of Rituxin but they ran it slow so not a huge problem, fatigue sets in but that could be the disease. Had vision loss and lung involvement - vision better. Remaining lung involvement is due to the fact that when doing the needle biopsy the doc cut into a lung artery and I had a bunch of bleeding so still recovering from that.

    Frustrating with didferent docs saying different things- I second guess everything but I know everyon is different and docs base your treatment on how you are doing - or so that is what I have read

    please let me know if you have any other questions that I can help you with. I am new to all of this also and I know that me wishing it away is just not going to happen for me or anyone else....but I can still wish and hope and do what I gotta do to be healthy as. I can.

    Take care!

  7. #17
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    Hi Fiona, I went undiagnosed for two years. The problems I had with my ears was all on the exterior but it was very painful. I have kidney and heart involvment. I have had rituxan twice. Once in July 2014 and again in October 2014. After the treatments my kidney function came back considerably and all symptoms except joint pain cleared up. Joint pain has improved considerably. I do have asteoarthritis so that caused most of the joint pain now. I have been off all medications since last February and no reappearance of WG. We keep watching my creatinine levels every two months and do ANCA checks about every 4 months. I am a firm believer in RTX to kick WG in the butt fast. My doctor calls it the big gun. It is a little scary when you read all the side effects, but I only had some leg cramping. I had leg cramping from pred tapering too. Good luck to you. I hope your docs do something for you fast.
    Karen; dx'ed April 2014

  8. #18
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    Hi All - My Rheumo has applied for me to commence Rixutumab treatment. This is due to my ANCA levels increasing and some symptoms of Wegener's being active. I currently wake up every morning with a blocked nose, when blow I there is blood in the mucus, and when I sneeze I have bright red blood. In addition I have excessive sweating. I have no pain but Rheumo has advised he is recommending in case it progresses any further and affects other areas. I am really nervous and scared. He has advised 4 weekly treatments. I need to go and get a Hep B shot. In addition, I am having ear operation next week to insert grommets to hopefully clear my middle ear blockage. I am so upset as I was feeling a lot better and then all of a sudden little by little it starts to creep back.

  9. #19
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    I haven't used RTX, but it sounds like you are at a fairly early stage and there's not much to worry about, if the med works out well for you. Most seem to do fine with it. All the alternatives have their risks and problems. I understand feeling OK about everything and then later, getting worried and scared. It all evens out, usually. And I wouldn't worry about getting the grommets, either, as I think that is simple and quick, though I never had it because my eardrums burst open on their own! So you see, it could be worse. I think many have been helped by the grommets. Good luck!
    Anne, dx'ed April 2011

  10. #20
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    Fiona, hi... At least you're doctor is taking action! Be happy with that, Fiona... And good luck, with the ear surgury... Debra
    Live,love,and laugh...

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