Less Severe = Shorter Remissions

So I was talking with Dr Villa Forte at my last appt, and expressing my annoyance at repeated flares. One thing she mentioned that I don't recall hearing before is that those who have less severe onset seem to have a harder time staying in remission. Kind of strange really, but seems ultimately fair given the less severe initial symptoms. Not sure that is a completely scientific thing and I'm sure there are those from both sides that run counter to this.

Anyway wanted to share that as I found it interesting. At least in my case it seems to fit.

I believe there maybe some validity to that statement.
Most treated vasculitis patients will experience renal failure within 2-3 years.
So, if someone catches the disease early, they may still have issues until they reach renal failure if that is how far it gets.
Not sure with Rituximab because it hasn't been used as long, so maybe this trend will change.

Are you talking about remission w/o drugs or drug sustained remission?

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Originally Posted by Allisonquast

Are you talking about remission w/o drugs or drug sustained remission?

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Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.

Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...

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Originally Posted by godgirl

Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...

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I was treated fairly aggressively, so I really don't think that is it. I couldn't begin to speculate why though.

As far as the Renal failure, I'm going on 4 years now with no sign of any Kidney issues at all. My flares have all been pretty quickly treated though. I have to say I just wish they'd stop so I could stay at least on a low dose of Prednisone for a while.

I'm told that in cases of "limited" GPA, flares are mostly limited to the original site(s) of trouble, e.g. nose and ears, and usually respond well to the original treatment. This is one of those disorders where the treatment can be worse than the disease, so the trick for you and your docs is to strike the right balance.

Hi Bob,
What was your creatinine when your kidneys were at their worst?
What is your creatinine now?

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Originally Posted by mrtmeo

Most treated vasculitis patients will experience renal failure within 2-3 years.
So, if someone catches the disease early, they may still have issues until they reach renal failure if that is how far it gets.

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I do not understand this statement. Or did you mean "untreated" vasculitis patients. Either way, I don't think it makes sense. It certainly is not a trend among our forum members. I think I would know if most of us were reaching renal failure within 2-3 years. Many of us have gone much longer than that without any kidney issues, let alone failure. Even many of us who went undiagnosed and untreated for a couple years or more, myself included, have not had kidney issues. This doesn't mean that we never will, but I don't think your statement is correct and wonder where you are getting your information.

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Originally Posted by mrtmeo

Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.

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I guess what I meant was after the initial treatment maintenance or no maintenance.

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Originally Posted by mrtmeo

Since the mortality rate of untreated MPA or GPA averages 5 months, I am referring to drug induced remission.

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This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months? I went for 2.5 years without proper treatment and others have gone longer. If you mean when someone goes untreated for a major severe episode possibly requiring hospitalization, then maybe yes. I was treated for ear and sinus infections, and allergies, but not for Wegener's, during my undiagnosed period.

My Weg expert at Mayo also mentioned once that cases limited to sinuses often have most flares and difficulty attaining and maintaining remission. And the most serous cases often seem to attain a better remission, maybe because the severe cases have to be treated very aggressively for person to survive.

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Originally Posted by godgirl

Wonder if this has anything to do with how agressively it's first treated. My symptoms are definitely less severe than a lot of wegs patients and they're not treating it very aggressively. I've wondered if this is a mistake and will make things worse in the years to come...

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Originally Posted by annekat

This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months? I went for 2.5 years without proper treatment and others have gone longer. If you mean when someone goes untreated for a major severe episode possibly requiring hospitalization, then maybe yes. I was treated for ear and sinus infections, and allergies, but not for Wegener's, during my undiagnosed period.

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Before there was effective treatment for Wegs most died within a few weeks or months after it was diagnosed. Most cases back then were probably NOT diagnosed too until there was massive kidney or lung involvement so life expectancy would then be very short without any effective treatment. Even now some people on here have died shortly after their diagnosis if it was delayed a long time and the damage was severe before any proper treatment was started. Their treatment may have been too little or come too late.

After our initial treatment, if we survive and 90% or so do, then we are most likely going to die from an infection or other complications that results from our Weg damage to our body.

Good explanation, drz. It's true that I was coasting along with my sinus and ear issues for 2.5 years, sick enough to have it interfere with my life, but not life threatening at the time. Then things escalated and my lungs got involved and that got worse over a couple of months to the point where I thought I had pneumonia. Others have had worse lung involvement, but without diagnosis and proper treatment at that point, I do believe it would have continued to escalate and I would have died within a couple more months.

I was at the Vasculitis Symposium last year and remember hearing about "less severe" cases (like mine) seeming to flare more frequently, and with shorter remissions.

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Originally Posted by makabe

I was at the Vasculitis Symposium last year and remember hearing about "less severe" cases (like mine) seeming to flare more frequently, and with shorter remissions.

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That's interesting. I think I have a less severe case, although I did have some lung involvement that was blasted by CTX and hasn't shown signs of returning at all. The nasal/sinus/ears stuff I do still have, largely because of permanent damage to the area, although it's a lot better. But I have flared the last two winters since 2012 when I got off CTX and onto MTX and things were fairly well under control.

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Originally Posted by annekat

This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months? I went for 2.5 years without proper treatment and others have gone longer. If you mean when someone goes untreated for a major severe episode possibly requiring hospitalization, then maybe yes. I was treated for ear and sinus infections, and allergies, but not for Wegener's, during my undiagnosed period.

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Hi Annekat,
Yes, the literature specifically states that the death rate from mpa and gpa untreated is 5 months.
World Allergy Organization | Allergic Diseases Resource Center

This doesn't mean that everyone is subject to this statistic, but just their clinical finding.
My mom has had mpa for 3.5 years untreated.
The literature, also states that the average time to renal failure is 2-3 years, but not all get renal involvement.

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Originally Posted by annekat

I do not understand this statement. Or did you mean "untreated" vasculitis patients. Either way, I don't think it makes sense. It certainly is not a trend among our forum members. I think I would know if most of us were reaching renal failure within 2-3 years. Many of us have gone much longer than that without any kidney issues, let alone failure. Even many of us who went undiagnosed and untreated for a couple years or more, myself included, have not had kidney issues. This doesn't mean that we never will, but I don't think your statement is correct and wonder where you are getting your information.

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Hi Annekat,
I'm sorry.
I should have elaborated.
I just assumed it was common knowledge of the clinical incident rates.
This statistic is from the clinical studies and cases and doesn't mean that everyone with gpa or mpa will fit this.

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Originally Posted by mrtmeo

Hi Annekat,
I'm sorry.
I should have elaborated.
I just assumed it was common knowledge of the clinical incident rates.
This statistic is from the clinical studies and cases and doesn't mean that everyone with gpa or mpa will fit this.

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It's OK. I think part of the issues we are finding disagreement on is just semantics. Some of us may spend a lot of time looking at clinical studies, but most of us have other things to do in our lives and are more concerned with what each other are going through, what our doctors are saying, and how we can help newcomers through our own experience. We like seeing some clinical studies once in awhile, too. We have often suggested that newcomers not get too wrapped up in what they see on the internet, as different sites will say different things and can easily be misinterpreted. Even the top sites haven't always been updated in awhile, and people may get scared by what they see, which may be the most extreme examples. We know that many on here are doing quite well and haven't had even half of the variations of symptoms described on these sites. Others are not doing as well, we know, and we could all have more severe episodes in the future. I looked at the site you linked to and saw that it goes into a lot of depth, and will probably spend more time looking at it again. I did notice, however, that it called Wegeners and vasculitis an "allergic" disease, which I have never heard it called before in the 3.5 years since my dx. That seemed odd to me. True, allergies involve an improper reaction of the the immune system, too, and people with allergies may be more predisposed to AI diseases. We don't know, though there are theories about what triggers them. The experts so far are still saying they don't know for sure what causes WG.

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Originally Posted by annekat

This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months?

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As was already posted several studies quote that median life expectancy of 5 months after diagnosis if left untreated, but I'm not sure where they get that number from. I mean it would be a bit silly if they kept a group of Wegs each year without meds to see how long they survive, so maybe its based on data from before there were any meds avaialable to us, an back then it probably took a much longer time to diagnosed as ANCA & PR3-values are a more recent discovery. I also remember reading that 90% died within a year if left untreated, but again why would anyone be completely untreated?

I did read a dissertation about Wegs, which collected data from 1980 and forward, and it had more data on the mortality rates. Not really sure if its useful info, since I don't think dwelling on the subject really has any benefits. Additionally I don't think those statistics can be applied that easily from person to person, I mean it makes a great difference if you are talking about someone who is 85 years old and the first symptom is kidney failure, or if you are talking about a 15 year old who starts with nasal symptoms. Obviously the 85 year old wouldn't be expected to live for 20 years even without Wegs, but will still affect the statistics.. A 20 year follow-up wouldn't either take into account the better meds people have today and the advances done in recent years, like account for Rituximab and less use of cyclos. But that's just my opinion :)

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Originally Posted by annekat

It's OK. I think part of the issues we are finding disagreement on is just semantics. Some of us may spend a lot of time looking at clinical studies, but most of us have other things to do in our lives and are more concerned with what each other are going through, what our doctors are saying, and how we can help newcomers through our own experience. We like seeing some clinical studies once in awhile, too. We have often suggested that newcomers not get too wrapped up in what they see on the internet, as different sites will say different things and can easily be misinterpreted. Even the top sites haven't always been updated in awhile, and people may get scared by what they see, which may be the most extreme examples. We know that many on here are doing quite well and haven't had even half of the variations of symptoms described on these sites. Others are not doing as well, we know, and we could all have more severe episodes in the future. I looked at the site you linked to and saw that it goes into a lot of depth, and will probably spend more time looking at it again. I did notice, however, that it called Wegeners and vasculitis an "allergic" disease, which I have never heard it called before in the 3.5 years since my dx. That seemed odd to me. True, allergies involve an improper reaction of the the immune system, too, and people with allergies may be more predisposed to AI diseases. We don't know, though there are theories about what triggers them. The experts so far are still saying they don't know for sure what causes WG.

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Hi Annekat,
Vasculitis has been associated with hypersensitivity reactions, especially, leukocytoclastic vasculitis.
Here is another doc stating untreated gpa mortality of 5 months.
https://online.epocrates.com/dx/inde...51&activeTab=9

I am so glad that this is no longer a disease with little treatment options and now, has some very much improved treatments with far better outcomes.
I cannot imagine what it was like to have vasculitis prior to cytoxan.

Hopefully, with the newer biomarkers they find for these diseases, they can diagnose much earlier preventing damage.
It is so important to get the awareness out to the people.

I am not arguing with the 5 month statistic as long as we are making it clear that we are talking about 5 months UNTREATED, AFTER DIAGNOSIS. Especially if the dx is made during a severe and life-threatening flare, rather than just during moderate sinus issues. And I completely agree with Wegetarian's point of view above. Why would anyone with a diagnosis be going untreated, anyway? So what is the point of dwelling on this statistic?

As I said further above, I feel that my lung issues were severe enough at dx that if I hadn't been diagnosed and treated, I probably would have died within a few months, statistics or not. But it is not likely that would have happened, because in this day and age, most would be diagnosed before long with the symptoms I was having. And others have had much worse. I was only in the hospital overnight, and getting a dx after that did take some doing, as the hospital doc had suggested WG, based on a CT scan, but just forwarded his observation on to my other docs, and it was up to me and them to take it from there. So yes, I could have just flaked on the situation, but I would soon have gotten worse and would have ended up in the hospital again, for a longer period of time, where I would no doubt have been diagnosed and treatment would have started.

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Originally Posted by annekat

Why would anyone with a diagnosis be going untreated, anyway? So what is the point of dwelling on this statistic?

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Hi Annekat,
My mom was p-anca postive in Jan 2012, but no one knew what this meant, so she went untreated for years.
I know she didn't actually have a diagnosis, but someone should have known what the p-anca meant.

I was not dwelling on the statistic, but just giving u another example of the 5 months untreated stat that wasn't referring to hypersensitivity.

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Originally Posted by mrtmeo

Hi Annekat,
My mom was p-anca postive in Jan 2012, but no one knew what this meant, so she went untreated for years.
I know she didn't actually have a diagnosis, but someone should have known what the p-anca meant.

I was not dwelling on the statistic, but just giving u another example of the 5 months untreated stat that wasn't referring to hypersensitivity.

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You can call me Anne. Every case is different. True, someone should have known what the positive anca meant. But during the time she was untreated, and should have been diagnosed, it may not have been severe enough for her to die within 5 months. Many of us have had what we call "smoldering Wegs", where it can cause symptoms for years but they may seem to docs like just typical sinus issues, asthma, etc. That's why we often don't get diagnosed until it gets really bad. I guess part of my point, which I didn't make, was that having this "smoldering" type of Wegs would not likely kill a person in 5 months whether or not they were lucky enough to get a dx early on. And at which point, if dx'ed, they would most likely get treated and we wouldn't see them get to the more severe and life-threatening stage. I'm not saying your mom had "smoldering Wegs"; I do not know what her symptoms were, or how severe, during her undiagnosed and untreated period. If they were severe, then I guess she was very lucky not to die within 5 months. And I don't think being dx'ed, whether treated or untreated, would be an indicator of whether or not someone will die within 5 months. Some cases are severe enough that the person will die within 5 months despite dx and treatment. Others are light enough that there could be a diagnosis, but the person could foolishly refuse treatment and go on living for years before it possibly got severe enough that they would die without treatment.

I was not the first person to say that we needn't dwell on the statistic, but I did agree with his point of view. I did not directly say that you were dwelling on the statistic. I am dwelling on it just as much by putting this much into the discussion of it. I think Wegetarian just meant that it is a statistic for something that would rarely happen, since people who are diagnosed are normally treated, so how is it relevant? I would worry more about people who are NOT diagnosed and not treated, especially if the symptoms are severe, which they are not always.

Most of all, I wish the best for your mom, and hope she is better than when you first came onto the forum. I know you've been very worried and I sincerely hope she pulls through and has some quality years of life ahead of her..

Thank you Anne and I wish you and everyone with vasculitis a cure.
I fear every moment and every cmp that shows her kidneys getting worse.
I believe the natural supplements and her steroidal inhaler have been giving my mom all these years have kept the disease a little less than it could have been.

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Originally Posted by mrtmeo

Thank you Anne and I wish you and everyone with vasculitis a cure.
I fear every moment and every cmp that shows her kidneys getting worse.
I believe the natural supplements and her steroidal inhaler have been giving my mom all these years have kept the disease a little less than it could have been.

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I especially sympathize about your mom's kidneys, since I don't have that issue at all, as yet, and can only imagine how much more scared I'd be if I did. It seems she should be getting treatment that will make them better, not worse. If she is on RTX, it does take some time to start working, so that may happen and she may improve. Same with CTX, although it works a little faster, but it is used less and less because of it's potentially toxic side effects. Good luck to you both!

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Originally Posted by annekat

I especially sympathize about your mom's kidneys, since I don't have that issue at all, as yet, and can only imagine how much more scared I'd be if I did. It seems she should be getting treatment that will make them better, not worse. If she is on RTX, it does take some time to start working, so that may happen and she may improve. Same with CTX, although it works a little faster, but it is used less and less because of it's potentially toxic side effects. Good luck to you both!

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Hi Anne,
I am so glad u don't have the renal issue with this and pray u never do!

My mom had a one week's dose of IV ctx and 4 weeks of rtx.
Her kidney function was improving after the last infusion, but she got anemic again because the nephrologist forgot to give her more Epogen and her kidney function got worse again.
She is 3 months from her first rtx infusion and seems like she is in another flare.
I know for most it takes 3-6 months to reach remission and the waiting game is the hardest.

I didn't know that rtx works slower than ctx.

Most treated vasculitis patients will experience renal failure within 2-3 years


Source?

I do know Rituxan reversed my kidney issues, ear issues, sinus issues, "not being able to walk" issue. Its less than a year since I was diagnosed, and I feel like I never had the disease. I did lose my right lung upper lobe, but I do not feel any different with breathing than before I got GPA. I do not take any meds. No pred' ....nada. All the soreness, all the inflammation ..... gone. For me, Rituxan did the trick for sure.

Hi, Mrtmeo, I don't know how much faster CTX is to work than RTX, I just know that it is somewhat faster. I think your mom getting the CTX by IV followed by the RTX sounds like a good plan. That was probably to try to jump start the suppression of disease activity. I'm sorry things didn't work out so well after that, with the doc forgetting part of the treatment and all. As far as remission goes, it takes many of us longer than 3-6 months. But we usually do show a lot of improvement in that time and get a lot of our normal lives back, or what we call the "new normal". Remission is sort of a subjective word, and different docs may use it differently. In my 3.5 years of treatment, I have never been declared in remission, though I have felt pretty close to it. Like right now, I feel quite good. But I've tended to have mild flares in the winter, so that could happen again. It is so true that each case is different, and for many, stress levels in their lives may be a big factor in having trouble reaching remission. Also, most in remission still depend on some meds to keep them there. The lucky few, and there are some on here, have reached remission in 3 to 6 months and are also off the meds. In any case, you are right about the waiting game being hard to take. Especially when it is with someone as important to you as your mother. I think it likely that even if she doesn't go into an official remission sometime this year or early in the next, she will show a lot of recovery, improvement in her symptoms and the numbers, and begin to enjoy a better quality of life. I certainly hope so. I wonder if it isn't nearly time for another RTX infusion, and if she is doing badly, maybe a little more IV CTX wouldn't hurt, either. But I am not a doctor.

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Originally Posted by Bing505z

Most treated vasculitis patients will experience renal failure within 2-3 years


Source?

I do know Rituxan reversed my kidney issues, ear issues, sinus issues, "not being able to walk" issue. Its less than a year since I was diagnosed, and I feel like I never had the disease. I did lose my right lung upper lobe, but I do not feel any different with breathing than before I got GPA. I do not take any meds. No pred' ....nada. All the soreness, all the inflammation ..... gone. For me, Rituxan did the trick for sure.

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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?

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Originally Posted by annekat

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?

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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.

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.

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.

"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.:mad1:

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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Originally Posted by aewaustin

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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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.

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Originally Posted by gilders

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.

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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?

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

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Originally Posted by mrtmeo

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?

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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.

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.

Sorry to hear that Nickki

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Originally Posted by NikkiNicole

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.

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Sorry to hear your Wegs is acting up again. I hope you get it back under better control and feel better soon.

Relapses during the first year or two of treatment are probably the norm but tend to be partly controlled or reduced in severity by being under treatment with meds to reduce Wegs while you usually slowly move toward remission. Once you are correctly diagnosed with Wegs it is also a lot easier for you and your doctors to recognize a flare when they occur after you finally attain a remission and to begin proper treatment in a timely manner. Some people have great difficulty attaining a state of remission and may only show a substantial or significant improvement without attaining a solid state of remission or have frequent and on going relapses.

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Originally Posted by Psyborg

...At least in my case it seems to fit.

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Fits me too. I was most severe, nearly died, isolated mostly to lungs, with some other symptoms.

Yet I did very well, It was 10 years before my next flare.... Including 5 years with no medicine whatsoever!

I am so sorry for those of you who deal with the "chronic" version!! that is so so hard.

My dr said i was 2 weeks shy of kidney failure when i got my dx. In 14 years ive had had around 10 flares. Mine is chronic, smoldering. I guess we are all different.

Dr Jayne has told me that those with sinus involvement are likely to flare within 2-5 years. If you go over this time you are likely to have a long remission. If you flare within 2-4 years then you are likely to always flare within this time frame. I was flaring for god knows how many years before diagnosis. When diagnosed I was treated with MTX but it didn't bring my symptoms under control. I was then given a course of RTX which gave me remission. I then flared after 2 years so I fit into this category.