Overcoming a flare?

[MCC]

Hi,
I wondered if anyone has been able to recover from a flare without going back on medication? I have a positive ANCA and my doctor is saying I may need to go back on medication (been off totally for 6 weeks), but if there's the possibility it could go back to normal by itself I would rather not go onto medication again.

I feel ok, not ill. Have a headache and slight stuffy nose but I have had a very heavy weekend work wise si it could be that. Doctor is just waiting on my next blood test results.

Also, she says she doesn't believe stress is a trigger, but I'm sure studies say otherwise?

[Al]

Hi,
I wondered if anyone has been able to recover from a flare without going back on medication? I have a positive ANCA and my doctor is saying I may need to go back on medication (been off totally for 6 weeks), but if there's the possibility it could go back to normal by itself I would rather not go onto medication again.

I feel ok, not ill. Have a headache and slight stuffy nose but I have had a very heavy weekend work wise si it could be that. Doctor is just waiting on my next blood test results.

Also, she says she doesn't believe stress is a trigger, but I'm sure studies say otherwise?

Well, the answer to your question about the meds is a big "maybe". Here is what happens: ANCA may be present, and in growing numbers, but this does not mean that you have an active inflammation. For that to happen, two additional things must occur: Your immune system produces more antigens--either MPO or PR-3 (it does this for reasons poorly understood), and it generates massive numbers of cytokines, which are chemical messengers. Cytokines are usually produced in mass quantities during an infection. Stress itself probably does not have a direct impact as a "trigger", but it can, and often does, compromise the immune system to the point that infections are more likely to occur. I doubt that the ANCA titer will decrease on its own, at least in the short term. Does this help?

Al

[MCC]

Yes thanks Al. I have a new doctor, I don't think she's an expert and I don't want to be pushed into going back onto medication just because of the ANCA result. I'll see what else she says.

Actually I realise I do feel ill for the first time in a long time, which started yesterday. As said, not terrible but a little ill, I'm finding it hard to concentrate. Perhaps it's just knowing there might be something wrong though.

[Al]

Yes thanks Al. I have a new doctor, I don't think she's an expert and I don't want to be pushed into going back onto medication just because of the ANCA result. I'll see what else she says.

Actually I realise I do feel ill for the first time in a long time, which started yesterday. As said, not terrible but a little ill, I'm finding it hard to concentrate. Perhaps it's just knowing there might be something wrong though.

Could be "simply" stress. or worry. But keep an eye on it. What were your original symptoms? And your history? You probably should check inflammation markers now and then: sed rate, CRP, creatinine clearance. And, of course, any overt signs, like coughing up blood and blood in the urine are unmistakable.

You may have have to educate your doctor (some will resist, but the good ones are amenable), or, if it is feasible, get a referral to a Wegs specialist.

Al

[maria garcia]

Al , my daughter was positive for P anca but always the sed rate and crp normal. Her eyes and nose did have inflammation but the test for infl. were negative. She has also had P anca positive and MPO negative and vise versa MPO positive and Anca negative and of course also both positive.

[annekat]

Also, she says she doesn't believe stress is a trigger, but I'm sure studies say otherwise? I think a lot of us would disagree with THAT statement! I haven't known much about WG for very long, but I know that when I get stressed out, my symptoms increase and I feel worse!

Anne

[pberggren1]

Al , my daughter was positive for P anca but always the sed rate and crp normal. Her eyes and nose did have inflammation but the test for infl. were negative. She has also had P anca positive and MPO negative and vise versa MPO positive and Anca negative and of course also both positive.

Ines, I have a feeling you are trying to say that her P and C ANCA are positive and negative like this. MPO is basically P-ANCA and if one is positive then the other will be as well. The P-ANCA is a screening. If it shows positive then they measure to see how much MPO is in there.

[Sangye]

I can't count how many people in this group have mentioned that their Wegs began or flared as a result of intense stress, such as a death in the family. Chronic high stress is also a killer.

[Al]

I can't count how many people in this group have mentioned that their Wegs began or flared as a result of intense stress, such as a death in the family. Chronic high stress is also a killer.
In my case, I believe stress led to shingles, which I suspect brought on the flare.

Al

[annekat]

I can't count how many people in this group have mentioned that their Wegs began or flared as a result of intense stress, such as a death in the family. Chronic high stress is also a killer. I was diagnosed three weeks after my dad died. Of course, I was already sick, but when it really hit me hard was at that point.

[Widthofacircle]

My symptoms, joint swelling, kidney problems and serious weight loss kicked in following a period of high work stress although I had been having eye problems for quite a few months prior to this.
Brendan

[vdub]

widthofacircle? Is that the same as circumference divided by 2 times pi? I.e., C/2π How did you come up with widthofacircle?

[Sangye]

That is so funny. I have looked at that screen name so many times trying to decipher it. I finally decided it must be a British name or name of a town. LOL :laugh::blink:

[Al]

That is so funny. I have looked at that screen name so many times trying to decipher it. I finally decided it must be a British name or name of a town. LOL :laugh::blink:

My private theory has been that Widthofacircle is a champion pie baker....

Al

[annekat]

My private theory has been that Widthofacircle is a champion pie baker....

Al Lol! I like that one. I was thinking, since he is from Dublin, it might be part of an Irish proverb or saying. It will be interesting to see what the origin of it really is.

Anne

[delorisdoe]

I always pictured my pred face and assumed it was a reference to that.

[MCC]

Been to hospital. I can stay off medication for now and be closely monitored as the ANCA is still low but positive.

I feel angry right now that no one (medical) seems to care about WHY wegeners happens and just deal with the disease itself. This seems madness to me. It is so important and surely the key to this.

[vincelv]

from what ive been through you cant always judge wegeners on a blood test because you can be possitive one way and not show anything else...when i got diagnosed i got diagnosed on most of my symptoms and just a slight raise in one of the blood test..he said most docs would not have considered the blood test as accurate..but he went by the all around innflamation in my nose and my eye at the time which was necrostised an im not getting my vision or funtion in that eye again..thats what my doc told me..but if it wasnt for my rhueme i wouldnt be here..he got it right on exp..and i thank him for that...the only major flare i had is that my hands and legs and shoulders would lock up on me..even my jaw had alil pain to where it was hard too chew..my doc told me to bump my pred a few mili grams and see if it would help..i did now im back down..to 3mg pred..yeah no aches so far :D still on 10 pills of methotrexate a week but im not to worried about that..also stress is a killer..

[pberggren1]

Been to hospital. I can stay off medication for now and be closely monitored as the ANCA is still low but positive.

I feel angry right now that no one (medical) seems to care about WHY wegeners happens and just deal with the disease itself. This seems madness to me. It is so important and surely the key to this.

I would not worry about what temporal things might cause Wegs. So many studies have been done and there is no evidence that anything causes Wegs.

[Al]

I would not worry about what temporal things might cause Wegs. So many studies have been done and there is no evidence that anything causes Wegs.

Actually, Phil, this might be phrased, "there is no evidence that any one thing causes Wegs." There are plenty of suspects which do seem to be heavily involved with the onset of WG, though firm proof is hard to come by. The problem is that there are so many possible culprits, that it is hard to identify one single thing.

Al

[Al]

Been to hospital. I can stay off medication for now and be closely monitored as the ANCA is still low but positive.

I feel angry right now that no one (medical) seems to care about WHY wegeners happens and just deal with the disease itself. This seems madness to me. It is so important and surely the key to this.

You are right that the why of WG is key. And it is true that EG, like most autoimmune diseases, is understudied. (In a different thread, I pinned the blame for this largely on the fact that most research is funded by Big Pharma, which is not so interested in "niche" diseases, especially when there is little potential for sales of expensive products. However, WG is, like anything else having to deal with the immune system, immensely complicated. To borrow an expression that neurophysicists use, we're sort of at the point of knowing how to repair a printed circuit board with a chain saw. However, There are a few teams of researchers around the world who are making pretty good progress on the etiology and pathogenesis of WG. (A prime example is the nephrology department of UNC at Chapel Hill.) Indeed, I would argue the opposite: It is on the therapeutic side that few new and specific protocols have come out of any research. (The few pharmaceutical mediations we do have were mostly developed for other diseases.)

Al

[Sangye]

Been to hospital. I can stay off medication for now and be closely monitored as the ANCA is still low but positive.

I feel angry right now that no one (medical) seems to care about WHY wegeners happens and just deal with the disease itself. This seems madness to me. It is so important and surely the key to this.
You are right on with this. MDs ignore the likelihood that the same thing that caused Wegs in the first place is continuing to disrupt the body, leading to unresponsive disease and/or flares. If toxins caused someone's Wegs, it's not like they disappeared once the disease appeared. And the person could still be exposed to the very toxins that caused Wegs in the first place, making it difficult or impossible to treat.

In my case I have strong evidence that the Wegs was caused by toxins-- some of them being the chemicals used in my new manufactured home. I had a healthy dog who died in that home (undiagnosable disease that looked like Wegs in retrospect) and I got sick there. I moved out 1.5 years after dx and got better. If I could do a detox I know I'd be much better.

[Sangye]

I also agree with Al that there's no money to be made in finding the cause of diseases. A chronically sick society ensures that the bank accounts of Big Pharma (and many in the medical profession) will continue to get bigger.

[MCC]

I also agree with Al that there's no money to be made in finding the cause of diseases. A chronically sick society ensures that the bank accounts of Big Pharma (and many in the medical profession) will continue to get bigger.

Yes I too agree. They discuss this in depth in Food Matters, the documentary.

I hope I can keep the wegeners at bay, but I am not hopeful. I discussed doing a high raw food diet with my doctor (a detox of sorts) and she seems to think it won't make a difference...she said there is nothing I can do to help myself, but I will try. I won't spend my life on and off the drugs.

[MCC]

You are right on with this. MDs ignore the likelihood that the same thing that caused Wegs in the first place is continuing to disrupt the body, leading to unresponsive disease and/or flares. If toxins caused someone's Wegs, it's not like they disappeared once the disease appeared. And the person could still be exposed to the very toxins that caused Wegs in the first place, making it difficult or impossible to treat.

In my case I have strong evidence that the Wegs was caused by toxins-- some of them being the chemicals used in my new manufactured home. I had a healthy dog who died in that home (undiagnosable disease that looked like Wegs in retrospect) and I got sick there. I moved out 1.5 years after dx and got better. If I could do a detox I know I'd be much better.

Yes this has always been my worry, that the drugs were just keeping what was the cause at bay, but it is still there. I also suspect toxins. Doctors just dismissed this worry though and said if the cause is still around then the drugs would not have been able to overcome it so well...but they are very powerful and now look what happens when I stop taking them.

[Widthofacircle]

widthofacircle? Is that the same as circumference divided by 2 times pi? I.e., C/2π How did you come up with widthofacircle?

Hi VDUB.
Nothing as complicated as all that. It,s the title of a David Bowie song from way back
Brendan

[Widthofacircle]

My private theory has been that Widthofacircle is a champion pie baker....

Al
Close Al, I am actually a champion pie eater.

[Lightwarrior]

Hi VDUB.
Nothing as complicated as all that. It,s the title of a David Bowie song from way back
Brendan

Interesting, now I'll have to listen to the song.

[Widthofacircle]

Interesting, now I'll have to listen to the song.
Hi Lightwarrior
YouTube it and enjoy. Pretty heavy stuff. Not many would know that Bowie did this kind of music
Brendan

[Al]

Close Al, I am actually a champion pie eater.

Ah. Sounds like a James Joyce short story from university days, Brendan: The illustrious Two-Pi Eater of Dublin. Or did I see that on YouTube...?

Al

[Widthofacircle]

Ah. Sounds like a James Joyce short story from university days, Brendan: The illustrious Two-Pi Eater of Dublin. Or did I see that on YouTube...?

Al
sorry Al
Nothing as cryptic as that. As I have said, just the titleof a David Bowie song from way back. Maybe David Bowie read James Joyce. I must look into this
Brendan

[Al]

...Maybe David Bowie read James Joyce. I must look into this
Brendan
This image made me laugh deeply! And yet...could it be...?

Al

[Widthofacircle]

This image made me laugh deeply! And yet...could it be...?

Al

Yes it could Al. That,s what makes this a fascinating place to live
Brendan

[MCC]

Hi, me again.

So, didn't really get to the bottom of this before - has anyone been able to recover from a flare without going back on medication? either raised ANCA or symptoms or both?

[Al]

....So, didn't really get to the bottom of this before - has anyone been able to recover from a flare without going back on medication? either raised ANCA or symptoms or both?

Anything is possible, of course, but unlikely for a major flare. In the early, "smoldering" stages, it probably happens a fair amount. This intermittent quality has the downside of allowing a lot of organ damage before it is discovered.

Al

[MCC]

So a month on I still have a positive ANCA (which hasn't got any higher) but have managed to stay off medication.

[maria garcia]

Im wondering :crying:I see weggies on this forum which have been on medication for a long time without stopping. If the medication works and your in remission then you would take a different med for maintenance. If meds are not putting you in remission then you should be trying another med. Just my humble opinion.

Why are people taking meds for a long period of time if there blood work is fine and not changed to a maintenance med? why are people taking a maint. med for years. This would mean your not in
a real remission if you have to keep taking meds.

[Chris G]

So a month on I still have a positive ANCA (which hasn't got any higher) but have managed to stay off medication.

It is possible to have positive anca without symptoms, and the reverse is also true - symptoms without positive anca. Yes, it is also possible for wg to go into remission on its own. But I believe this would be earlier on in the disease. Many of us had fleeting symptoms early on - you could consider those mini flares I suppose......with remissions in between. In 07/08 I had my first real flare prior to diagnosis. It lasted about 5 months, and then went away (remission?) on its own for over 2 years. This time, it has lasted long enough to get a diagnosis and beyond :mad1: - it's definitely more stubborn this time around - its not about to go down without a fight. So, again, my guess would be that remission without drugs probably only happens in the early stages. But who knows!? I'd love to think it could go away at any time!!

[pberggren1]

Are you talking about ctx Maria? Being on ctx for more than 3 months is very risky and dangerous for sure.

I woudl think that the people that are on mtx or aza or Cellcept and such for longer than 2 years must have had more complications at the 1.5 to 2 year mark and needed to stay on it to prevent a possible flare or to treat a flare.

I will be on aza for another year and then taper off over 3 months if things are looking good.

[Chris G]

Im wondering :crying:I see weggies on this forum which have been on medication for a long time without stopping. If the medication works and your in remission then you would take a different med for maintenance. If meds are not putting you in remission then you should be trying another med. Just my humble opinion.

Why are people taking meds for a long period of time if there blood work is fine and not changed to a maintenance med? why are people taking a maint. med for years. This would mean your not in
a real remission if you have to keep taking meds.

There's more than one kind of remission. Drug induced remission (that's not exactly what they call it), and drug free remission. And probably variations in between as well.

I think one theory is that after a few years a wg cycle (so to speak) peters out, and you can stop the drugs. Usually the theory goes more like Sangye's dog analogy. The dog has to be lulled to sleep (with drugs for a long period of time), and then once he's SOUND asleep, we try stopping the drugs, and hope no one wakes him up.

[Al]

Maria, I think most of us are afraid that if the dog awakes, as he almost surely will at some point, he will be in a foul mood--especially if he is off his meds. In my case, another awakening would probably put me in line for dialysis, if I am lucky. Sleep, boy, sleep.

Al

[delorisdoe]

Im wondering :crying:I see weggies on this forum which have been on medication for a long time without stopping. If the medication works and your in remission then you would take a different med for maintenance. If meds are not putting you in remission then you should be trying another med. Just my humble opinion.

Why are people taking meds for a long period of time if there blood work is fine and not changed to a maintenance med? why are people taking a maint. med for years. This would mean your not in
a real remission if you have to keep taking meds.

My doctor told me there are two types of remission. One is medical remission and to be considered to be in this category you are wegeners free so to speak but only if on the meds. once you try to get off the meds the wegeners returns. The other type is simply remission which means you are in remission and not on drugs. This is of course what we all want but unfortunatlely with wegeners it is not common. The only way you know if you are in remission is to reduce the drugs and see what happens. Did this make sense?

[delorisdoe]

I am tempted to think that with your daughter being so young and with there being no kidney involvement her doctors will try to have her drug free and not spend the rest of her life on meds. If this is the case it is a long and rocky road of failed attempts to get of the drugs but well worth it in the end. It took me two years of a lot of cytoxan to get to this point.

[maria garcia]

How do you know how long to take the meds? And if CTX can only be taken for three months than if your not on remission then what happens. What about if the Chemo doesn't work:sad:.

[annekat]

How do you know how long to take the meds? And if CTX can only be taken for three months than if your not on remission then what happens. What about if the Chemo doesn't work:sad:. I know there are people on here taking CTX for longer than 3 months, myself included.

Anne

[Lightwarrior]

My answer to this question is YES i have had several flares over the last 5 years and at least half of them i recovered without medication.

I've never been able to come off of the meds.

[pberggren1]

How do you know how long to take the meds? And if CTX can only be taken for three months than if your not on remission then what happens. What about if the Chemo doesn't work:sad:.

Each case is so individual that the length of time to take meds like aza or pred varies quite a bit.

If after taking ctx for 3 months and one is still not in remission then I'd say one would be in big trouble. Probably longer on ctx and maybe even rtx. Hard to say for sure though.

[JanW]

I've been medicated since March 2010 and have been in remission probably more than half that time. I feel well and am on such a low dose of mtx (which a lot of people use for maintenance anyway) that it probably doesn't really matter but I'm staying on it until I have the reconstruction on my nose and then we will see.

You can certainly be considered fully in remission yet on medication. There's lively debate among rheumys whether Weggies should get off meds and risk a flare, or whether staying on them forever actually prevents a flare. That debate continues.

[drz]

I've been medicated since March 2010 and have been in remission probably more than half that time. I feel well and am on such a low dose of mtx (which a lot of people use for maintenance anyway) that it probably doesn't really matter but I'm staying on it until I have the reconstruction on my nose and then we will see.

You can certainly be considered fully in remission yet on medication. There's lively debate among rheumys whether Weggies should get off meds and risk a flare, or whether staying on them forever actually prevents a flare. That debate continues.

I was advise to remain on low dosage of pred while taking azathioprine, probably through the rest of this year, as there is some belief from early research it may help prevent flares or make them milder. Because of my diabetes and its horrible negative influence on my blood glucose level my doctors thought it safer for me stay on low dosage of pred rather than having to bump it backup to the higher levels during a more serious flare. There is also consideration given to risk of what a real serious flare might do. For me it most likely will end my kidneys and might put me on oxygen for rest of my life so taking extra drugs seems a smaller risk. I am considered to be in a drug induced remission at present and doing "Weggie good".

[MCC]

My answer to this question is YES i have had several flares over the last 5 years and at least half of them i recovered without medication.

That's great to hear, thanks for posting!

[norcalian]

My new rheumy told me in my last appointment that they try for drug-free remission once and then if I flare as a result of being without drugs I will be placed on maintenance drugs (most likely AZA at some level) for the rest of my life (or until some other treatment procedure comes around). I'm still new at all this, so I haven't flared yet. I haven't been told that I am officially in remission...but I am. My blood work is all pretty normal and I feel pretty good (except for the occasional day where I feel run-down and stay home from work, like today). My original rheumy told me that he expected that with my case that I would flare every year and a half to two years. He said each flare would be treated pretty much the same - with a two-shot of RTX and a temporary bump in pred and AZA. I had full-blown WG - I don't think there's any expectation that I will be able to get through a flare without treatment. But I can live with the treatment plan my original rheumy outlined.

[Al]

My new rheumy told me in my last appointment that they try for drug-free remission once and then if I flare as a result of being without drugs I will be placed on maintenance drugs (most likely AZA at some level) for the rest of my life (or until some other treatment procedure comes around). I'm still new at all this, so I haven't flared yet. I haven't been told that I am officially in remission...but I am. My blood work is all pretty normal and I feel pretty good (except for the occasional day where I feel run-down and stay home from work, like today). My original rheumy told me that he expected that with my case that I would flare every year and a half to two years. He said each flare would be treated pretty much the same - with a two-shot of RTX and a temporary bump in pred and AZA. I had full-blown WG - I don't think there's any expectation that I will be able to get through a flare without treatment. But I can live with the treatment plan my original rheumy outlined.

As I have noted before, "remission" is a strange term. We strive for it, of course, but what does it really mean? You are in remission, sort of, so long as the disease is not active (though it can be smoldering and you might not know it). Then you get a flare and suddenly you have relapsed. How long between flares? No one knows.....

Al

[norcalian]

I think the general consensus is that when you're labs look good and you feel good that you are probably in remission...if not just for the sake of how to move forward with treatment goals. (interestingly, my new rheumy says that she pays more attention to how I feel than she does to slight changes in my labs to decide when I'm having a "flare"). But I agree with what everyone is saying here...there is not set rule as to how long people have between flares. As we all know...the only thing that seems to tie us together in this disease is the diagnosis (the presence of granulomas, ANCA - usually, being a subset of vasculitis, etc) and not even that all the time. But definitely the experience is different and specific to the individual. I've seen people on this site talk about riding their bike for 20 miles just a couple of months after getting out of the hospital. That definitely was NOT my experience...and I am relatively young and was in pretty good shape before getting sick. I got PCP, most people don't. It's really tough to nail anything down in terms of this disease. The hope is a long, drug-free remission...although I'm being told by my rheumy that long-term drug-free remission is pretty rare...so I guess that there is that statistic out there...the statistic of "rare".

[delorisdoe]

That's great to hear, thanks for posting!

I am going to send you a pm.