PDA

View Full Version : Flare/remission question



snooz23
11-19-2009, 02:19 PM
Since my dx in Sept. these terms have remained very elusive to me so I thought I would ask some of the experts. It is a truly so confusing to me. Is it possible to remain on more or less the same drug plan and have flares that come and go throughout the week? Maybe one or two days you are feeling like you start back at ground zero and the other days you feel better, not great, just better. And then the other thing I cannot quite understand is what will a remission feel like. Should I be 100% symptom free because I can hardly believe that will ever happen. Like I always tell my doctors, it's not that I feel better necessarily just different. Meaning yes maybe I'm not in as much pain, but I have all these other issues that add up to being in pretty much the same position.

I also realize a lot of this questioning may be so soon to be considering. I have seen some posts where remission is achieved rather quickly while others take much, much long and often struggle w/ actually achieving any kind of remission.

I guess what I am asking is how do you describe a remission and flare for yourself my fellow weggies?

Doug
11-19-2009, 03:16 PM
A remission is an absence of symptoms that is verified by medical tests.

Since WG mimics so many other things, you may be in remission but have symptoms that aren't actually WG. It's complicated! We tend to use the "feel good" standard on this site because it is possbile to feel pretty good yet still have measureables that are in the active flare range.

I don't know if a person ever achieves a symptom-free state, but anyone who's been in remission can state they feel reasonably well for a change. I am in remission yet I still experience peripheral neurapathy. Other WG symptoms seem to appear from time to time, but I have those checked by my doctor if they persist. So far, they have been false positives.

We speak of the "new normal" from time to time on this site. That is a state of health that may not be as good as what you felt before you became a weggie, but that is a stable, reasonably symptom-free state you and your doctor feel is remission, in one definition.

Another "new normal" state might be where your symptoms are in a stable zone that suggests you are headed toward a state of remission, but that haven't yet lasted long enough or decreased far enough to call "in remission". Typically, you are still on Cellcept or some other drug post Cytoxan and Prednisone (or whatever you started on), but feel pretty good if not back to a state where you feel like running a footrace just yet.

I hope that gives you some sense of it.

Jack
11-19-2009, 06:45 PM
Doug gives a pretty good description.

I consider remission to be a stable state maintained without having to take the most toxic of the control drugs. Most Wegener's symptoms should be minor and easy to live with. The daily ups and downs you describe are just part of the normal active Wegener's symptoms and not mini flares. A true flare will require increased medication and may take some time to bring under control.

In my own case, I consider myself to be in remission. My Wegener's has been pretty well inactive for years although this state is only maintained while I take lots of pills. That is not to say that I feel fine and have no symptoms. Just the opposite! 25 years of toxic drugs have made a real mess of me and I'm now paying for the good years they bought. :(

elephant
11-19-2009, 11:02 PM
Another thing to consider is sometimes Wegeners does damage to the body and we end up with medical complications because of it. I have severe damage to my left maxillary, also had a kidney transplant, lung nodule removed so I wonder is it the Wegeners coming back? Or is it a cold? Or is it a sinus infection? ?? I already had 4 maxillary surgeries in the last 18 months. Last surgery was Sept 2009. So it can be confusing. So I just go by other symptoms ( short of breath, swollen joints/pain, fever, lethargic). :( So we always have to be on top of our symptoms and let the doctor know what's going on. It's like having a second job trying to manage our care.:rolleyes::)

Sangye
11-20-2009, 02:54 AM
Boy, these were all great answers!

I only have one thing to add. I've heard about poker players having a "tell"--a facial expression, body movement, etc... that reveals when they have a good hand.

I know my body's "tells" for Wegs: My ankles swell more than usual. I have a profound sense of fatigue. I'm extremely restless at night-- writhing, even when awake-- and have insomnia. Night sweats.

When these start showing up, I know it's Wegs and not something else. They show up WAY before blood work shows anything, and way before more typical symptoms appear (eg, cough).

snooz23
11-20-2009, 04:22 AM
Thank you so much for all the insightful replies. It is so interesting to hear from those that have years experience in this never-ending balancing act. I appreciate all the reponses.

It is just so hard to get used to the fact that I always feel like something is coming on...it doesn't quite take me out completely but it is just hoverings overhead...my chest is tight, I'm short of breath, I have pressure in the face, of course my ears are always ringing, I'm just achy and not feeling right BUT I can still function fairly normal--take care of my kids for the most part, go to work a bit and just function. Then I begin to freak out because I say oh no I'm not paying enough attention to this and I could be headed towards some kind of huge explosion....eeeeck run, run, run.

Well, I will just appreciate today for what is in and know I can probably expect something different tomorrow and everyday thereafter....I guess that is really life anyway, huh?

Jack
11-20-2009, 04:47 AM
Wegener's can often be a real roller coaster ride with symptoms coming and going all the time. Sometimes it can take years for a symptom to clear, I know that I have had many that I've now forgotten about, only to be replaced by others. Sometimes there may be a big gap with hardly any problems at all! :)

Doug
11-21-2009, 09:53 AM
Gad! We should publish this "page"! So many really good responses. It just goes to show how complex remission is, and how confusing it has to be to people just getting there, or hoping to.

coffeelover
11-22-2009, 03:38 AM
I have been on the 'verge" of remission for quite some time now, but not quite there. This is frustrating. I am going to see a Weg specialist in the next two weeks and maybe he can shed some light on it for me. One day I feel like I am doing great, the next day I am wondering if I am getting worse. Each day brings new challenges and questions, but each day I am thankful that I feel as good as I do. I still spend some days wishing I did not have this disease, but for the most part my outlook is positive and I have come to appreciate more of the little things.

As some of you know I run a hotel and sometimes people complain about the smallest, most insignifacant things and I think to myself "they should be thankful, they donot have wegs!" .

Lisa coffeelover

elephant
11-22-2009, 05:32 AM
Hi coffeelover, I love coffee too. I am so glad you are seeing a Weg specialist. This disease can be so confusing, like I said before. What's you favorite coffee brand? My favorite is Starbucks and Dunkin Doughnuts. Love the smell of coffee Morning ,noon and night.:D

Jack
11-22-2009, 06:32 AM
Have you tried dark chocolate covered coffee beans? One crunch and it's like drinking an espresso!

elephant
11-22-2009, 06:51 AM
Wow, dark chocolate and coffee. Yum! I need to try it!

Doug
11-22-2009, 09:19 AM
Lisa-

We've all been there! I think Jack was the one who mentioned how symptoms come and go even during remission. I think it is good to verify you are still doing OK when this happens- if the symptoms persist over several days, a week perhaps (I'd like to hear other people's thoughts on that point!). Especially when you had full-blown WG as recently as you.

Yet, the symptoms still come and go after you hit remission, they just don't stay around, nor do I think they necessarily indicate you are losing the battle for remission.

The body is in a constant state of settling in to this new normal, I suppose. Last week my feet were exceptionally numb compared with most days recently. This week, the left foot is fine, the right foot is mostly back to normal for my right foot- i.e. a little numb. Every time I blow my nose too hard and rupture a vessel (Never by picking it! My word!), I get a little panicky because for a day or two it seems likie the bad old days of crusting.

I think one gets used to being over-protective of one's body, but it's better to be this way than to become blase and miss a big change that is a flare. :)

Doug
11-22-2009, 09:20 AM
Have you tried dark chocolate covered coffee beans? One crunch and it's like drinking an espresso!

Mmmm! Yes! Exactly!:) (We're not "off topic"- we're just in solidarity with our friend Lisa Coffeelover, however that might manifest itself!)

Sangye
11-22-2009, 09:40 AM
I recently started getting some nasal involvement. I think the rituxan is kicking in fast enough, though, so I don't anticipate it being a problem. When I saw the ENT about some crust formation, he said to do saline rinses. He also warned, "Don't manipulate it." I thought that was a pretty classy way of saying "Don't pick your nose." In his business, I bet he knows a gazillion ways to say it.

DuaneHart
11-22-2009, 01:57 PM
I just saw the ENT drs and they said that there was a little bit of tissue swelling in the sinuses but nothing that points to wegs. I'm still on the methotrexate and down to 35mg prednisone. At this point they don't know if I have wegs yet or not. My hemoglobin has been dropping and they are not sure why. They also have me on Symbicort and Albuterol inhalors and flonase nasal sprays. I just wish something could get figured out. I take the mtx on Fridays and by Saturday afternoon I just feel like total cr*p! Puffy eyes, extremely tired, no energy whatsoever. Is this all a part of the wegs management? I think I'm just feeling sorry for myself.

snooz23
11-22-2009, 02:51 PM
coffeelover,

I am wondering when you were dx? and how long you have been on treatment and where you are in that process? I know no one is the same....just reading your response made me curious.

p.s. i too love my coffee, i have been trying to avoid it a little, certainly not drink as much (thanks again predisione for ruining all the fun!).

Sangye
11-22-2009, 03:32 PM
Duane, I don't remember if you see a Wegs specialist.... Hemoglobin dropping is usually the only sign in my blood work that my lungs are bleeding (ie, Wegs). I don't usually cough up blood, though things got so bad in June that I did.

elephant
11-22-2009, 11:00 PM
Hi DuaneHart, It sounds like you have lung involvement, I'm guessing by the medicines that you take. Have you been more short of breath? You could have some bleeding in the stomach or lungs. Did they test your stool (poop) for blood? My sister is on Methotrexate and it can make you tired. Hope you get your answers soon.:)

elephant
11-22-2009, 11:12 PM
Hi again DuaneHart, Have you seen a Hematologist yet? They can figure out why your hemoglobin is low usually.

jola57
11-23-2009, 06:47 AM
Duane I take mtx on sunday morning and all day stay close to the bathroom, then for the next 3 days I feel like cr*py just like you. It seems by the time I feel better its time to take it again. My liver is acting up so my rheumy took me down to 4 pills mtx -took 6 before. My hemoglobin is fine though so make sure they check you out both up and down. You should have a gastroscopy, cystoscopy and colonoscopy to rule out bleeding uless its a byproduct of the meds you take.

DuaneHart
11-23-2009, 09:36 AM
I do have Crohns disease and Ulcerative Colitis that came out of remission around August of 2008 after 13 years. In April or May 2009 was when they thought I had Wegs and was put on Methotrexate and Prednisone which stopped the bleeding from the colitis. I had a bronchoscopy about two weeks ago and everything looked good. I am seeing Dr Specks who is a Pulmonologist who is a Wegs specialist at Mayo in Rochester and he thinks that it may not be wegs but are still trying to figure out what is going on with me. It is just very frustrating and am just soooo tired of feeling like this. I think Mayo is the place to be though and I have total faith in all of my "ologists" that I have been seeing. Someday it will all come together ;-)

Sangye
11-23-2009, 10:42 AM
You're definitely in the right hands with Dr Specks, a Wegs specialist. They'll figure it out. :)

Doug
11-23-2009, 12:49 PM
[SIDEBAR to Jolanta- That's a great new avatar!:)]

jola57
11-23-2009, 05:16 PM
Thanks Doug, I thought you would like it.
Duane you are indeed in good hands

Momof3
11-24-2009, 04:51 AM
Thank you so much for this post, it expresses exactly how I feel-confused...not sure what to look for and what the goal is. I was diagnosed last May and started reading this blog, someone posted that they had WG's and had been in med free remission for 15 years-of course I thought, that's what I want- med free remission for a long time. Now, months later, still unable to titrate my prednisone down even by 1mg and increasing my methotrexate to the max I am still having shortness of breath,cough. I talked with my doc about rituxiban and she said I hadn't failed on methotrexate. She is saying it will take 3-5 years of treatment to achieve remission, it is all so confusing and I am an RN so it should make more sense. I guess I need to stop looking for the switch to turn off on WG's and realize it is a process, constantly fluctuating. It is hard to know when it is just a fluctuation or a "flare" that should cause alarm and send me into the MD. Thanks for all the positives on this site.
*chocolate covered espresso beans helped me get through college:)-they are great!

Doug
11-24-2009, 05:13 AM
(Yes, :)Jolanta, it makes you come across as wise, thoughtful, and to the point! :)I smile:) each time I:) see it)

elephant
11-24-2009, 05:25 AM
Hi Momof3, I'm a RN too and WG is a very confusing disease, even for the docs. Took them 30 years to diagnose me. Did the Rheumy doc start you with cytoxan first? What were your symptoms? Whenever I have shortness of breath I call my pulmonologist and they usually do a lung function test or CT scan. Then if it's a big concern they will call my Rheumy at the Cleveland Clinic, I live in South Carolina. Methotrexate works pretty fast. Methotrexate is usuallya maintence drug after you have taken cytoxan. They use Methotrexate for mild/limited WG too. As you may know this forum has helped me too.:D

coffeelover
11-24-2009, 08:08 AM
Duane,

I will be in Rochester on Dec 2nd to visit with an ENT specialist who also specialized in WEgs. His name is Eric Moore. Do you know anything about him?
I am sorry you are having such difficulty. If it works out I would love to meet up with you and your wife again. Dennis will be with me as well. My appt is at 2 ish.

Lisa

Sangye
11-24-2009, 08:27 AM
Momof3,
Surely it wasn't a Wegs specialist who told you it'll take 3-5 yrs to achieve remission? Based on what? Some people go into remission after a few months of treatment, while others take way longer than 5 years. Wegs itself is highly variable, and each person's response to treatment is as well. It isn't like cancer, where there is some predictability.

If you haven't been able to reduce your pred, and you're still having shortness of breath and cough, it seems to me that your treatment may need to be adjusted. Maybe mtx isn't strong enough. It isn't usually used to induce remission unless someone has a very mild case of Wegs.

snooz23
11-24-2009, 01:41 PM
I am also on the metho. and pred. at this point. It is my understanding I do have a "milder" form of Wegs, however it has taken away my hearing, and I do have nodules on my lungs. I am also short of breath, chest tightness and overall feeling crappy. Teetering between infection, damage, side effects....it is always just so much to take. Just like I said before it is just amazing how each day presents a whole new batch of bad to replace the couple of goods that may have happened the day before. I am just in this treatment phase a couple months so I know I need to have patience and I also think about switching medications? However, I do see Dr. Langford in Cleveland and I know she is one of the best, so I definitely have trust in the fact she is doing what she does best and I am always in contact w/ them. I have not heard of remission taking 3-5 years so that is a little disappointing....I do know you may remit and then end up back w/ active disease in that amount of time....I am hoping they may be some level of remission before then.

Sangye
11-24-2009, 03:48 PM
Snooz, when do you see Dr Langford again?

How long have you been on the mtx? It takes about a month to fully kick in-- same as all the immunosuppressants. So if you've been on it for 2 months, it's only really been working for 1 month.

Jack
11-24-2009, 06:05 PM
I had flares for about the first 5 years. They seemed to stop when I switched to Mycophenolate so it might just be a case of finding the right drug.

elephant
11-24-2009, 11:13 PM
Hi Snooz23, I also see Dr Langford. I drive 10 hours to see her. I have a rheumy in town that corresponds with her too. You are lucky that you live in Ohio and being so close to a great hospital! Like Jack said it may take another drug to reduce the flares. If you have been on Methotrexate for two months, you need to give it some time. If you start to feel really bad ( flu like symptoms that don't go away or worsening flares ) call the doc. I had flu like symptoms from Imuran ( drug reaction), so they put me on Cellcept 2000 mg. Anyways, I think your in good hands. She always tells me call if you have any questions. :D

DuaneHart
11-25-2009, 02:10 PM
Hi Lisa
Sorry but I don't now anything about Eric Moore. We'll have to keep in touch about Dec 2. I work that day at 6pm so maybe we could meet downtown near Mayo after your appointment and before I go to work?

berylj
11-26-2009, 08:35 AM
just read the recent posts,im just recovering from my 1st ever flare!seems i will have to stay on azathioprine to keep stable,ive now realised what a 'normal' life means with wg!also curious about these nasal treatments,ive not heard of it before,maybe ive been lucky,apart from a runny nose i am trying to stop looking in my tissue
everytime i wipe it tho! get funny looks!
had a recent visit to vasculitis clinic and nurse told me that in 3yrs patient nos have
doubled hopefully due to gps becoming more aware of wg,on average patients have
seen 5 docs before being refered to them, on my 1st visit to a new gp after moving
house she had to look up wg on the net! thats one more who is now aware of wg!
berylj

elephant
11-26-2009, 10:03 AM
Hi Berylg, I use the sinus rinse to prevent sinus infections and to clear the mucus out. I have severe damage in my Maxillary. Four sinus surgery even removed bone from my maxillary. You can buy the sinus rinse at any CVS,walgreens or any pharmacy really. I love it. It has kept my sinuses clean. Squeaky clean.:D

Sangye
11-26-2009, 12:16 PM
Berylj,
Those are really interesting numbers about Wegs cases. Thanks for posting them. Which vasculitis center do you go to?

snooz23
11-26-2009, 12:19 PM
Sangye...I see Dr. Langford again at the end of Dec. I see them every month...yes I am lucky I only have to drive 2.5 hrs. each way to see one of the country's top notch wegs specialist. I am very happy about this. By that point I will have been on the metho./pred. combination for a little over 3 months, so I guess they will weigh it at that time.

Sangye
11-26-2009, 12:26 PM
Snooz, I think it's worth an email or phone call to ask if it's normal to have the shortness of breath and chest tightness--if it needs attention sooner or if it can wait until your next appt. I do this with my 2 main Wegs docs and they're always happy to know. Sometimes they say it can wait and sometimes they say "Come now."

Jack
11-26-2009, 06:11 PM
just read the recent posts,im just recovering from my 1st ever flare!seems i will have to stay on azathioprine to keep stable
That may well not be the case. I had numerous flares and went back through the cyclophosphomide / azathioprine treatment on many occasions, but finaly stabilised on the fairly harmless (by comparison) drug Myfortic.

berylj
11-27-2009, 04:29 AM
hi elephant,luckily i havent had the nasal probs you & others have had,but i will be gratefull to know this if i should have similiar probs in future, we can never know from one day to the next what surprises wg throws at us!
berylj

berylj
11-27-2009, 04:34 AM
hi jack thanks for that info, im on 100 azathioprine daily, & 5 pred but i hope to reduce the azo, i believe its not good long term,
berylj

berylj
11-27-2009, 04:40 AM
hi sangye, i go to a clinic in cambridge england, brilliant docs & nurses! i thought the info was a positve post, its good to know some progress is being made,
berylj

Jack
11-27-2009, 05:37 AM
5mg of pred while still on azathoiprine seems very low to me. I've only ever been on that dose once when I was doing very well, but soon had to increase it.
Azathioprine is still quite a heavyweight drug while 5mg of pred is barely a maintainance dose. Seems like a bit of an imbalance.