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Thread: Less Severe = Shorter Remissions

  1. #31
    Bing505z is offline Banned for being a douchebag
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    Quote Originally Posted by annekat View Post
    He might have meant untreated, rather than treated, vasculitis patients. But I am still doubtful about the statement as a great many of us have gone untreated for longer than that without renal failure or any kidney problems whatsoever. In any case, I'm glad you are doing so well in less than a year and are completely off the meds! Feeling like you never had the disease is a strong statement and a great one. You are one of the lucky ones, and it's nice to know it is possible. Was your GPA caught early?
    Yes. I fell ill in Jan '14 and diagnosed with GPA in Feb. Yes I am really blessed. Rituxan and great Doctors! I was so sick and when I came back from my hospital stay I started reading this forum and got really depressed from reading these stories. Yet as each week passed, then months passed I felt better and better. Now I look back to May and June and I am in awe how, just totally shocked on how I recovered. I have 3 Docs, and all 3 have seen me lying in a hospital, and when I see them now at appointments I hear "There's the miracle guy" as I walk in. I mean I walk in where I had to be wheeled in a chair. I could not walk. I look at every site and cannot find anyone who had a similar experience as mine. I have seen on the Vasculitis site youtube videos of people saying they could not walk and had to basically learn how to walk again like me, but they did not get back up as fast as I did. My main Doc is amazed also. I lost the right upper lobe of my lung, but I feel great. I see my Doc to run the blood again in December, with an all good on that I will go to every six month check ups. Lung Doc says first sign of blood though, come in asap. I just wanted to add that the way I feel now has blown me away, and I really hope that others who fall ill get diagnosed quickly, and that those who are going through really tough times pull through and get better. I really feel so blessed.
    Last edited by Bing505z; 09-24-2014 at 01:14 PM.

  2. #32
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    Very interesting, have not heard this before but it totally fits for me. I got sick with major vasculitus in my legs and the dermatologist that saw me diagnosed me in one visit, I also had severe kidney involvement where I was losing function at about 20% a month. So I was started on CTX a few months after I was first diagnosed and did that treatment for 2 years (CTX just 6 months of it), then was off of drugs for 18 years. In December of 2010 it hit again full force, meds for almost four years now, and expecting to be drug free this December. Pretty sure I would have been in the would have died category, without the CTX. Interestingly enough I do not have a positive ANCA, and when my fingers were so swollen that they were all touching my SED rate was on the low side of normal. Crazy disease...

    Just a thought, but CTX for me knocks it out. I wonder if the reason folks with less severe symptoms suffer for so long is that doctors can't justify the heavy hitters, but if folks that have it took the CTX I wonder if they would get rid of it. This second go round we were trying RTX and the doctors wanted to keep at it, but I was sick of being sick so I said that I wanted to do CTX full on, but if I had not done it before I would not have made that decision. In 1992 when I first was diagnosed CTX was the only option. Hard to justify doing CTX when it is not severe, but living in the kinda sick world sucks.

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    I personally am glad I got CTX. I had no kidney involvement, and still don't, but my lung involvement was severe enough to justify it. It knocked it right out and it hasn't shown any sign of coming back. It didn't keep WG from eroding away my thin sinus bones, septum, turbinates, and the drum and ossicles of one ear, however; but that damage was started before I was ever dx'ed. None of that will be reversed. And I have had a couple of moderate flares that were easy to nip in the bud with adjustments to my meds, which are currently MTX and pred. Much of the time I feel like I'm in medicated remission, though I reserve judgement until I see if I flare again this winter. Nothing has been severe enough to warrant going on RTX, and if I'm lucky, it never will. My main complaint was that I was on CTX too long, almost a year, longer than I needed to be, although the dose was reduced toward the end. Therefore, I've had enough CTX in my life that a doc might not let me take anymore if I got to that point.
    Anne, dx'ed April 2011

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    "less severe = shorter remissions". There seems to be somewhat truth in this. At onset my Wegener's was as severe as it could get. After 4 months from first symptoms I had been told I would not survive (Dr's actual words were I wouldn't be leaving hospital alive). By month 5 my kidneys had failed and it was a young nephrologist who took over my care and diagnosed Wegener's.
    I got in to drug-induced remission fairly quickly. After about 2 years I finally reduced my Pred to 0 and azathioprine to a low dose. But I only lasted a few days off pred before I relapsed. The relapse was severe as in it did further damage to my kidneys, but as treatment commenced quickly it didn't get aywhere near as bad as at onset.
    In brief this routine has continued, with 3 further relapses that have done further damage to my kidneys. But each relapse has not only gone in to drug- induced remission relatively quickly, but the periods between relapses has grown. I've always aimed for drug free remission and inbetween each relapse I have managed to do this, the longest being before my current relapse, which was about a 2-3 years.

    Now the reason I think the original statement is correct is due to my current relapse. This has been the least severe relapse with my kidneys not being "attacked" (although kidney results have been up and down a bit). My symptoms for this relapse began Sept/Oct 2012 and was only confirmed (nasal biopsy) as a relapse in Sep 2013. Whereas with all my other severe relapses where I began to see improvement soon after treatment commenced, this less severe relapse only began to respond to treatment around 4-5 month later. It's now 12months since I began treatment and I can't say if I'm in remission or not.
    So although I'm grateful I'm having a less severe flare/relapse, it's frustrating that I'm not responding as well as usual to the treatment.
    Diagnosed April 1995

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    Gilders - What drug did they use for you? Azathoprine? Why did they not use CTX or RTX? Seems that you would have been a lock in for a heavy hitter. And if you had gotten one of those I wonder if you would go longer without relapse. Would they give you RTX now? Some folks get it as maintenance...

    With CTX the first time I had remission for 18 years, now not sure if I am unique (we all are in our own little way) but I really am thankful for CTX because I think it knocks mine out for a good long while. CTX does suck, but the long term benefits are so worth it for me.

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    Quote Originally Posted by aewaustin View Post
    Gilders - What drug did they use for you? Azathoprine? Why did they not use CTX or RTX? Seems that you would have been a lock in for a heavy hitter. And if you had gotten one of those I wonder if you would go longer without relapse. Would they give you RTX now? Some folks get it as maintenance...

    With CTX the first time I had remission for 18 years, now not sure if I am unique (we all are in our own little way) but I really am thankful for CTX because I think it knocks mine out for a good long while. CTX does suck, but the long term benefits are so worth it for me.
    At onset I was treated with CTX but I couldn't tolerate it so it had to be stopped. MTX wasn't an option due to renal failure. This was back in 1995 so no RTX back then. High dose steroids and Azathioprine was my only option. Luckily it worked and has worked well for every relapse/flare since. In a sense it has worked for this current relapse as it eventually stopped it getting worse and I did improve a little in Feb/March.
    I think part of the reason I wasn't given RTX for this relapse is due to costs (NHS patient). Having said that I really only want the big hitting drugs if I REALLY need them. RTX is still fairly new so we don't yet know if there's long term side effects. Plus I did come across some info stating that the more RTX is used it becomes less effective. I have not across the less effective theory often, so don't know how true that is.
    Diagnosed April 1995

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    Quote Originally Posted by gilders View Post
    At onset I was treated with CTX but I couldn't tolerate it so it had to be stopped. MTX wasn't an option due to renal failure. This was back in 1995 so no RTX back then. High dose steroids and Azathioprine was my only option. Luckily it worked and has worked well for every relapse/flare since. In a sense it has worked for this current relapse as it eventually stopped it getting worse and I did improve a little in Feb/March.
    I think part of the reason I wasn't given RTX for this relapse is due to costs (NHS patient). Having said that I really only want the big hitting drugs if I REALLY need them. RTX is still fairly new so we don't yet know if there's long term side effects. Plus I did come across some info stating that the more RTX is used it becomes less effective. I have not across the less effective theory often, so don't know how true that is.
    Hi Gilders,
    You are an amazing survivor with only Imuran to rely on!
    This gives me hope for my mom when she goes back on Imuran.
    How much cytoxan did u get and was it oral or iv?
    Last edited by mrtmeo; 10-01-2014 at 01:55 AM.

  8. #38
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    Gilders - Interesting! Thanks for sharing. My first go round was around yours, 1992.

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    Quote Originally Posted by mrtmeo View Post
    Hi Gilders,
    You are an amazing survivor with only Imuran to rely on!
    This gives me hope for my mom when she goes back on Imuran.
    How much cytoxan did u get and was it oral or iv?
    Like I mentioned earlier, it was very severe. I was very ill so don't remember everything such as doses. At the time of being given cyclophosphamide I had 3 IV lines, lines for dialysis and oxygen. But I'm pretty certain that the Cyclo was oral. I think it was daily for only about a week before they had to stop it, but things are a bit fuzzy. It was certainly long enough for me to lose my hair (it's all returned though). I remember being on strict fluid restriction and hated the amount of tablets I had to take as swallowing them all took about half my daily allowance of fluids.

    Age was on my side as I was only 17.
    Diagnosed April 1995

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    Hi! While I have not gone back on my medications, I feel like I relapsed fairly quickly. I obtained remission via medications (MTX) and diet. I slipped off the diet, and the symptoms came back. My doctor is out until the 17th (new baby) so I have been trying to maintain some semblance of normal until then but ... I have come to accept that I am no longer in remission.
    I have major nasal pain, scabbing, nosebleeds, and a very very very tender right nostril like ... don't touch it. I am extremely fatigued and run down. I feel like I have the flu daily. I am trying to continue moving forward, but I am trying to also not kid myself that I am not in as good a shape as I was a couple months ago.
    I am starting to get my diet back under control and hope that helps.
    I didn't have a long remission and my symptoms were not severe. I don't know if that counts.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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