Wegeners disease in Remission.

[elephant]

My question is if 50% of people who have Wegeners disease stay in remission without medicine...does that mean that they have no nutritional deficiencies? less stress? Or that the wegeners disease was caught early so less damage?

[Sangye]

Good question. I look at some of you who had major lung and kidney involvement and were back to work in 3 months and wonder what the heck went wrong with me. And others with less severe disease than me who died. There's no way to figure it out. It just is what it is. I think the best thing we can do is find ways to get stronger physically and work towards acceptance of our situation.

[elephant]

Wegeners is a mystery to me. I love to figure it out but I know that is impossible. I love trying to figure things out even though it is what it is. ;)

[Sangye]

I'm the same way!

[jola57]

elephant it keeps the mind busy :)

[Col 23]

Do they define remission when you actually get of the medication and stay off for a period of time. Does anyone know the longest period of remission without any flares.
From what Ive read it usually comes back in some form after 1 -2 years after treatment. I also wonder if the younger you are the longer period of remission if caught early or if the older you are the less chance of long periods of remission. Hope that makes sense. Any thoughts.
Col 23

[elephant]

I think some people require to be on medication to keep them in remission. I find it fascinating the one's who go in remission without medication.

[JanW]

It's all a mystery. My ENT, Dr. Lebovics, who is a recognized expert, cautions me that I don't know what's going to happen over the rest of my life (I turn 45 on Thursday) even though everything looks really good for me right now. My inflammatory load (primarily SED rate and CRP) are going way down (though still above normal) and, as of yet, I have not been on pred -- this is on 15 mg of mtx only. Dr. L. expected to be discussing my second SS surgery by now (average time between 1st and 2nd surgery is 3-4 months in his practice; I had mine in early March) and I could tell that he was surprised to examine me and find me 'fully open." At the same time, my rheumy wants to speak with him to get him to override his rule about "no saddle nose surgery until you are medication free for six months" because my rheumy says "you honestly may never achieve medication-free remission." Good thing my rheumy and ENT are in my age group because we are going to be together for a long time.

One thing that I have been and continue to be impressed about in terms of this really expert guys is how seriously they take, and want you to take, any bodily symptoms. Every visit ends with "if you feel ANYTHING out of the ordinary, you're to pick up the phone and call the office immediately." Next appointments are always scheduled before they let you walk out. They never rush, and they always emphasize that it can attack anywhere, at any time, and that there is really nothing as docs that they can do about this. They are very humble in the face of this disease because they have seen a lot of it.


If this is what active disease will look like for me (again, no guarantees) it's really not so bad, especially if I can get my nose fixed.

[Sangye]

Many people require drugs to maintain remission, needing an immunosuppresant and/or pred. I haven't found any statistics on the number of people in drug-maintained remssion versus drug-free remission, and how long each lasts. Wouldn't that be interesting to know?

In this group, Mike Caven seems to have the record for the longest drug-free remission-- 27 years! He also felt great all that time, like he'd never had Wegs. When he flared last year, I think he did ctx and pred again and went right back into remission.

I think Jack may have the record for the longest drug-maintained remission--25 years. It took him 5 years to get to remission.

Both of these guys give me a LOT of hope on a daily basis. :)

[gmyi]

Many people require drugs to maintain remission, needing an immunosuppresant and/or pred. I haven't found any statistics on the number of people in drug-maintained remssion versus drug-free remission, and how long each lasts. Wouldn't that be interesting to know?

In this group, Mike Caven seems to have the record for the longest drug-free remission-- 27 years! He also felt great all that time, like he'd never had Wegs. When he flared last year, I think he did ctx and pred again and went right back into remission.

I think Jack may have the record for the longest drug-maintained remission--25 years. It took him 5 years to get to remission.

Both of these guys give me a LOT of hope on a daily basis. :)

I am in remission since September 2007 without medication when I start with W.G. it was with lung and severe kidney malfunction, DVT and over blood coagulation
About august 2007 the doc put me off prednisone and in September I asked to put me of Immuring the doc was no cooperative with my apply but I ask him to make a brake with it for a month and see if there will, be any change in my blood test or filling
And from then I am with no Immuring and no Pre..
I thing that that because the veracity of the symptoms and different medication response from every patient it is no any answer for your question

I am in remission since September 2007 without medication when I start with W.G. it was with lung and severe kidney malfunction, DVT and over blood coagulation
About august 2007 the doc put me off prednisone and in September I asked to put me of Immuring the doc was no cooperative with my apply but I ask him to make a brake with it for a month and see if there will, be any change in my blood test or filling
And from then I am with no Immuring and no Pre..
I thing that that because the veracity of the symptoms and different medication response from every patient it is no any answer for your question

[elephant]

That is great Gmyi, do you still see your doctor for check ups? You had no damage from the wegeners disease?

[gmyi]

I have regular monthly blood check and visit my local doc and every tree month I have check with my nephrologist and rheumy at hospital

[elaine krepis]

Hi Elephant, my name is Elaine and my husband has just been diagnosed with Wegeners.People are mentioning dying ,this is a little disturbing can you tell me what are the situations that you know of death with Wegeners. So far my husband has got it in his nasal passage, he has had his lunges checked and they are ok. He has no side effects with the medication so far. Can you just give us a little info of what we could be in for.

[elephant]

Hi Elaine, Welcome! First thing that is important is that he see's a Rhuematologist who specializes in Wegeners Disease. Having a specialist early on will save his life because they are up to date on the research ( wegeners disease) and see 100's of wegeners patients.
Usually the one's who die probably didn't get the right treatment , misdiagnosed or was too late because of all the damage that wegeners caused.
Does your husband have kidney involvement? What medicines is he on to control the Wegeners disease?
You will get alot of support here Elaine, glad to have you here. :)

[Sangye]

Hi Elaine, welcome to the group! I don't have anything more to add to what Elephant said-- I agree with her 100%. Just wanted to cast that vote. :D

[JanW]

Hi, Elaine -- the most important thinng in WG is viligance, constant maintenance of your health and losing the denial! This disease in unpredictable so you want to make sure that your rheumy is monitoring your bloods and urine (also a check for kidney involvement) frequently. Many people will WG live long and relatively healthy lives, but remember that it can attack almost anywhere at any time. One thing that is helpful in the early days is to get a baseline of all your 'systems' so, an EKG, hearing test, eye exam (by an MD, preferably one that sees autoimmune cases), bone density scan, lung CT, examination of throat and sinuses when they are involved are all in order. That way, if you develop hearing loss or congestion the doc can see where you were when newly diagnosed, and where you are now.

[Doug]

Elaine ~ I seem to have fallen into the role of "guy who puts up the Vasculitis Foundation link and recommends the correspondent study up on the disease, etc." So:


Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

This isn't the only source of information that's reliable. Johns Hopkins, Cleveland Clinic, and Mayo Clinic all have great experience with WG treatment, as you will read in posts throughout this forum. They also post information on WG. Personally, perhaps because the organization was started by a nurse with WG, I find this site the best one for orienting yourself to the nature and issues surround vasculitis, a group of diseases of which WG is one. There are places to locate doctors who specialize3 in the rtreatment of WG. There are places where the pose questions to ask your (your husband's) doctor Take a look.

It may reduce your stress and fear to realize people largely survive, even thrive with WG. Roughly 8% do die, but I'd almost guess they have a lot more affected by the disease than your husband. I wouldn't bet on it, though, because the disease affects each patient differently. Some have severe WG (because of renal involvement) yet respond well to treatment. Others with less invasive involvement don't respond to treatment, and suffer a long time.

Because the way each patient responds to treatment, and because WG manifests itself so many different ways, you will be nagged (count me with the crowd of naggers) to make sure you have a WG specialist, preferably a rheumatologist, treating you husband. Don't feel uncomfortable asking his doctor or doctors " How many patients do you have or have you had with this disease, and how are they doing?" or "Are you comfortable consulting with a WG specialist during the treatment of my husband?" Be nice about it, but drop any doctors who give you a sense they can do the job on their own. The WG specialists who brought me back to remission consulted with other specialists.

[gmyi]

In replay to your question about damage from W.G. i have some like my doc said "some scratches"
and the damages are kidney Mal function, DVT, and pain in my legs when I walk in an inclined way
or in stairs, I have pain and scraping in my left side of the face and head in result of Herpes Zoster

[elephant]

Gmyi, keep an eye on the legs, I had a DVT long time ago in my leg and every so often it gets tight ....I had a couple scans on my legs to rule out clots.

[elaine krepis]

Hi Elephant, hope all is well. The medication that my husband is taking is Prednisone 75mg and Cyclo 2 tablets, we haven't had his kidneys checked yet.
This is so scared, we just don't know what to expect

[elephant]

Hi elaine, I can't complain, just sinus issues but nothing major. Elaine just keep asking questions and learn as much as you can about this disease. I would get the kidney checked out. Is he seeing a Wegeners specialist? How is feeling?

[wgrebel]

I was diagnosed October 23, 2009 after battling a two month "sinus infection". I was in the hospital with my "sinus infection" the first week of September 2009 & had clear lung x-rays. By October 14 my lungs were full of nodules and after the C-anca test the rest was history. I had no kideny involvement in October 2009 but was back in the hospital in November 2009 with some kidney involvement. My creatinine was 2.3 when discharged from the HP was 1.3 in March 2010 and was 1.4 today. I returned to work part time in December 2009, working from home & full time in February 2010. I am an Administrative Law Judge so I do not do strenuous work. My numbers have improved over the months since my diagnosis to the point a VF recognized specialist stated I was in remission April 05, 2010. I am only going by what he said but my experience is remission is just that the disease is not active, that you still have to deal with what WG has done to you. Kind of like what happened after Katrina hit the coast. The storm was over August 29, 2005 but Mississippi is still rebuilding. That is how I view remission. WG damaged my hearing, completely destroyed the nerves in my right foot pad to the point I cannot feel with my right foot, killed a toe on each foot, cause me to go into congestive heart failure, and ravaged my kidneys and sinuses. I am at the stage where after six months of the standard treatment (cytoxan & preds) my specialist and rheumatologist are conferring to move me to Imuran and begin the gradual stepdown off prednisone. I dont know if it can be achieved with or without drugs but it seems to me first phase of remission is the repaif what has happened to you. The second phase may be getting back to normal. I dong know. The one thing I do know about WG is that it is much like the legal world----nothing is what it seems, there is no book to go by, the only constant is change, & it is wildy unpredictable and should be addressed on a case by case basis. You cannot put WG in a box and you cannot define remission in broad terms it is different from case to case.

[Col 23]

Hi wegrebel
I too am from the legal world and agree about on a case by case basis. Everyone has different reactions to the drugs and different symptoms although some are similiar to others. Im not in remission yet and have realised that getting back to normal may never be. But as this group describes it,we can achieve a "the new normal" for you. It is extremely frustrating waking up each day and within a couple of hours or less you know if your going to be okay today or not. How can we be in remission if we are still on medications to manage the disease. I think I will term remission as being totally off all drugs and no signs of the Wegs. This is only because one week it can be not active and the next it can be and it moves so fast. Constant vigilance, knowledge of signs and symptoms appear to assist in lessening the damage.
cheers Col 23

[elephant]

For some reason, some people never achieve remission without staying on a immunosuppressant drug. That also can mean maybe the right drug has not been used yet to get that person in remission...for example using the RTX instead of cytoxan.
Everyone is different, this disease is not cut and dry, it's very complicated and that is why I see a Wegeners specialist.
I'm on four medicines and have not achieved remission ( cyclosporine, bactrim, prednisone and cellcept)...still have night sweats, sinusitis , mild sinus pain and now red bumps on my skin...
I see my local Rhuemy today and then the Wegs specialist about week after that.

[Col 23]

Hi Elephant
I dont think I will ever really understand Wegs your right very complicated and individual.
Sorry to hear about the red bumps, I had them under one arm for a while, they were not raised but just very red, they faded and they went away, I also get sores if I have any clothing rubbing. Im not happy today I have to go up on the Pred for a while, have had a few bad weeks, tried to hang in there on 15mg of Pred after tapering but not going to happen just yet. More tests blah blah. Just when you think you have a chance of tapering and feel that you may be getting towards remission. I just want to get to 10mg as I heard that you start to loose the moon face and some weight.
cheers Col 23

[elephant]

Col it will happen, sorry your going up on prednisone. What is the plan? Is it to keep you on 15 mg for a month and then slowly reduce it down to 1 mg a month?

[JanW]

You can have a medication free remission or a medicated remission though. Remission really should mean the achievement of clinically minimal signs of disease activity. My doctor certainly told me to not expect that a medication free remission was in the cards, no matter what drugs were eventually given. His big thing is reducing/eliminating the use of prednisone, which has been possible in my case.

[elephant]

That would be my goal too, " Eliminating prednisone!"

[Sangye]

I've had non-stop active disease for 5 years with non-stop complications/damage and have never been able to get back to work or do much at all. I've been in constant severe pain no matter how limited my activity. The thought of all that continuing is far worse than the thought of being on immune-suppressants, even for life. I think if I had more function and less damaging disease, I might have a harder time coming to peace with the idea of a drug-maintained remission (immunosuppressant only, no pred).

This is a radical shift for me. When I was first dx'ed I couldn't imagine being on a single drug for a year. I guess the past 4 years have sort of beaten the idea into my head!

[Col 23]

Hi again
I suppose the dream is a medication free remission with limited damage and the reality is medicated remission. I dare to dream.

Have to go back up to 20mg Pred again for about a week and then taper slowly depending on tests taken today. So fatigued no quality of life at the moment, nose has started to drip again, aches and pains everywhere. Joints swelling and sweats. Oh so over it. Had been on 15 mg for nearly but not quite a month and deteriorated. Was meant to go down by 2.5mg on Saturday so disappointed. But hey I will survive the disappointment and keep on, I will get there eventually. Doc said it could take at least another 6 months.

Cheers Col 23

[DEE]

col 23
im on rollercoaster with preds can not get below 25mg at the moment without problems
living in hope like u de x

[Col 23]

Thanks Dee, it helps to know Im not alone in the fight. It makes me pull myself up and stop whining. Ive never been a patient person, I know what I want and want it now.....without the stamping of the foot, it hurts too much. Maybe this is my life lesson. You know the saying " I was upset when I couldnt afford a new pair of shoes until I saw someone without any feet."
I use to believe in the quote " All that happens has meaning and nothing is random or careless", Im beginning to question that one too. I better go to bed again Im sounding negative.
Thinking of you Dee and hope you can get below the 25 mg of Pred soon, it will happen.
cheers Col 23

[Sangye]

Aww Col, I think it's much too early for you to write off a drug-free remission. I'm so sorry you had to increase the pred again! I don't remember which immunosuppressant you're on. (Maybe I've asked a zillion times-- I just can't keep track.) But it does seem like the main immunosuppressant isn't working.

Don't be hard on yourself or think you're sounding negative. It's unbelievably frustrating and frightening to be stuck in the hole of Wegs.

[JanW]

I didn't mean to imply at all that people wouldn't get to drug-free remissions -- of course some of us do. I guess that just speaking for myself, I don't worry about having to maintain my quality of life with taking immunosuppressants long term. The drug taking, at this level, doesn't bother me -- I don't have side effects and the numbers seem to be going in the right direction for now.

[DEE]

CCol 23 whine away it does us good some times
ive been giving myself a hard time today this constant pain and heat yes its managed to be warm here today getting me down like u im going for shower and early to bed maybe i wake up in a better frame of mind tomorrow
tomorrows going to be a good day COL for all of ud :) DEE x

[Jack]

The drug taking, at this level, doesn't bother me -- I don't have side effects and the numbers seem to be going in the right direction for now.

How can I say this?

Should I say this?

Is it going to be helpful in any way?.....................

I have always been able to take almost anything with no immediate adverse side effects. However, after 25 years, it has caught up with me and I have a geriatric body at the ripe old age of 55. :(

Minimise your drug intake if you can, but not at the expense of a Wegener's flare up obviously. They may not seem to be doing any harm, but believe me, most of them are highly toxic.

[DEE]

Jack i think i feel abit like you 55yrs in a few weeks and just watched an 81yr on tv singing tonight !!!!!!!! she was great
im sat in my chair not knowing which bit of me hurts the most and legs feet etc swollen so dont want to get up
cough and pain in back and side so dont want to lie down
about to take next lot of meds before bed
not been through the nearly half of what tou have been through and your still there giving good and valid advice
thats why we all missed you DEEx

[elephant]

My local Rhuemy is pushing me to take the bone medicine (boniva) , I only have osteoporosis, I know she means well. She doesn't want me to have broken bones, but right now I have to many side effects from the drugs that gave me side effects for the wegeners....:( My local Rhuemy is glad I am seeing the WG specialist because I have some hard questions that she can probably answer.

[JanW]

Jack: really what choice does one have if one isn't in remission, except to take the drugs? I think it is obvious that everyone should want to take as few drugs as possible, and I don't think that I implied at all that these drugs are not toxic or are not toxic to me. I am educated enough to know that they are toxic, but WG is toxic also. I just don't think that people should necessarily make it their goal to live drug-free with this disease. That to me is not the 'win' -- the win is getting the disease down to a manageable level. What comes in the future comes.

[Sangye]

Jack is expressing what the Wegs specialists are realizing-- that the damage from the drugs can be just as bad or worse as from Wegs. I've communicated with Weggies on long-term imuran or mtx who didn't even realize those were chemo drugs. They tolerated them well, and didn't give it a second thought, not knowing they should be taking better-than-normal care of their health (eg. avoiding other toxins, eating well).

[JanW]

Again, I really think that it is up to the patient and the doctor together to educate themselves about the dangers of these drugs. The fact that you can tolerate the drugs well does not mean that they are not toxic. Hell, I am the one who isn't even on prednisone because the doctor thinks it's too toxic for me. I never said nor implied that these drugs weren't toxic just because I tolerate them well and I do understand well that they are chemotherapy agents. I still don't think that people should set for themselves a goal of being medication free and then be upset when that doesn't happen.

[Jack]

Sorry Jan, I was not implying that you don't understand the effects of your drugs. It is just that I'm a little bitter at the fact that my body is now a complete wreck due to drug side effects, whereas most of the Wegener's related symptoms have been in remission for many years (only due to the drugs).
Now that the disease is becoming more controllable the drug side effects are becoming more of an issue and the balance is swinging towards more gentle treatment strategies rather than the very aggressive one I underwent 25 years ago even though this was effective and I tolerated it well at the time.

[JanW]

Understood Jack. And I get frustrated as well when I read about people who have been on ctx 2 or 3 years (here or on other boards) and their docs (not specialists) are just fine with it. Because I know down the line that the very thing that they were taking in good faith will get them. I have the spine of someone twice my age, and I'm 45, and was never even on high-dose preds, just low dose for my (misdiagnosed) asthma. Total osteo. My doc says that the main drug that he's been "burned with" over the course of his career has been good old prednisone, but that most rheumys do not want to give immunosuppressants the time needed to work because of concern that the patient will get worse, and because high-dose prednisone will alleviate a lot of unpleasant clinical symptoms. Docs like to give us meds that make us feel better, and we all want to feel better as quickly as possible, so it's a vicious cycle.

[Sangye]

Jan, I wasn't referring to your knowledge of the drugs at all. I was making more of a general statement to Weggies "out there." I'm trying to maintain a loose grip on what remission will look like--neither clinging too hard to a drug-free remission nor feeling doomed to remain on drugs forever. This is incredibly difficult for newly-diagnosed Weggies. It's taken me several years to get to it.

[elephant]

It just comes down to life. I have a neighbor who has stage four cancer ( in her bones), started in her breast, lungs..ect. She is a walking miracle...she is in a study research) and used one new chemo and another one ( can't remember), but anyways the doctors told her she will be on chemo all her life until she passes which they never mention to her. It is amazing, and she works full time, she is bald and has a 13 yr old son and supportive husband. She was the one who helped me get through my lung surgery. I admire her strength!

[Col 23]

I just would like to say that the fact that you all make the effort and the time to state an opinion, give advice, tell your story and communicate on this site is invaluable. For me 6months into WG it has helped enormouslly to have such varied stories, experience and knowledge on this group site. It helps me to get my head around WG and to think about where Im at, to speak up and ask more questions at the docs and not just accept that its all in there hands but I too am responsible for my health. The days that I hit the wall I get on here and have a read, have some input if I feel up to it and realise Im not alone in this and although it saddens me to hear that other people are suffering I know that they at least they have this group.
Thank you all
cheers col 23

[jola57]

Thank you col23, we are all so different and our drugs are the worst of them all. Yet what choice do we have? Wheather it is aggresive treatment or light, if it helps us to live how can we argue? Arguably the quality of life is diminished because of the side effects but at least it is a life. Tell a mother of small children she has a choice, live longer but suffer crippling side effects now and possibly life threatening effects later in life or no drugs no side effects and a very short life. What do you think she would chose?

[Col 23]

Sad but true Jola. How are you at the mo?
Col 23

[Col 23]

Hi Elephant
Let me in on where and how she gets that kind of strength. Amazing woman however listening to alot of the stories on here I can see that there is some very brave, courageous, giving and determined people with alot of strength.
Col 23

[Col 23]

Jack your the veteran in this war on WG and your experience is very valuable to this site and its wonderful that "Jack is back".
Col 23

[Col 23]

Jan and Sangye, I find this interesting as Im having flare at the moment, that they up the pred instead of the methotrexate. Yes I have disappointment but I suppose thats just trying to maintain positivity that I will eventually get of meds however I am a realist and the doc put it plain and simple last week that " you will die if you dont take the meds". Thanks to this group I have more of an understanding that when your having a flare the damage it can cause.
Col 23

[Sangye]

Col, when my lungs started hemorrhaging last summer, I thought for sure my Wegs doc would put me on massive pred again. Instead, he put me on ctx (and later rtx when the ctx failed) and only put me on 4mg pred. Alveolar hemorrhage is considered a severe flare. That was a great example of how the Wegs specialists have learned how to adjust the main immunosuppressant vs increasing the pred.

If the hemorrhaging had gotten much worse, though, we would have had to increase the pred to stop it until the ctx/rtx could kick in. That's the second lession: treat a flare as soon as possible and you can avoid higher doses of pred.

[JanW]

I really can't speak as well to it as Sangye has because I am not debilitated by these disease - though I know that my SED, CRP and P3 values are tons higher than some people here who are clinically much worse. I do know that my doc would add judiciously to the mtx rather than even starting me on pred if he could avoid it. He feels that the tempo of my disease, as he calls it, doesn't require the rapid response of pred.

[pberggren1]

My Rheumy told me not to go off of the Alendronate especially if I am to go on the Rituxan as I will have to go on much higher pred.

[Col 23]

Thanks heaps for the responses, I think I will question this next week when I get the bloods back again with the doc. However I have to say 3 days into an extra 5mg of pred has just started to help with the extreme fatigue but does not appear to have settled other symptoms as yet. Only pain killers take the edge off but not the back pain.
cheers Col 23

[survivor]

I am trying to catch up with the messages. I see you are impressed how seriously your doctors take any new symptom in your body; I feel the same way about my physician. He insists I see him whenever something different appears: a cold, a lump, even a small cut. He is the head of a whole floor in a Montevideo hospital, and everyday he carries his round of patients. While he is doing this he does not want to be disturbed. And to get an appointment in his practice usually takes one and a half month. However, he told me that if some new symptom appears I should go to the hospital, when he is doing his rounds! Yes, JanW, he cares. Do you live in the US?

[survivor]

Hey people, this is the odd man out of the group writing from Uruguay. I want to share with you the news that today I had the results of my last blood and urine tests. No proteinuria (how do you say this word in English?) and a very low and acceptable rate of creatininemia (how do you say this word in English?). I was worried, because I caught a cold and a nasty cough (it's winter in the Southern Hemisphere now), but I was told that both problems were of no significance, and it was not necessary to use medication. I consulted with Dr. Cairoli (not my primary doctor, but a friend of mine), who is an especialist in autoimmune deseases, and he said that if I were his patient he would declare me in complete remission. But I'll wait for my doctor's opinion; if it is the same as Dr. Cairoli's then I'll buy the fireworks.

[elephant]

Hi survivor, creatininemia is creatinine and proteinuria is protein. Thanks for keeping us posted. Sounds like you doing good. :)

[JanW]

Yes, I live in the US, survivor. Right outside of Manhattan.

[Sangye]

Survivor, that's great. Proteinuria means protein in the urine. Creatininemia means elevated creatinine in the blood. Your terms are the same as the medical terms used in the US.

[elephant]

"I went to my Rheumatologist today and she is putting me on Bactrim DS daily because I keep getting sinus infections. I am on Bactrim DS twice a day for ten days. I started that dose on Sunday, but I noticed some blood and green/yellow stuff come out of my nose when doing the sinus rinse. I told her this, so if I don't get better in ten days,she wants me to go to the ENT and have him culture my sinus. I asked if I could have my cellcept reduced to 1500mg with Dr Langfords blessings of course. She came out faster than a speeding bullet, "NO!"
Well, she thought that since I am having sinus infections I should stay where I am at. I do agree somewhat, but the other side of me thinks reducing cellcept would lessen my sinus infections. Well that's all I got!

[freakyschizogirl]

Isnt it fascinating how this disease affects us all differently?

Aside from all the symptoms its things like the PR3 and ANCAs can be high in people with less symptoms.

It really is a person to person disease.

[Col 23]

Hi Elephant
Havent been on forum much lately so not all up to date. Are you meant to be in what I call medicated remission? When I asked my Rheumy when I would get of Methotrexate she said "probably not for years".
I suppose thats whats meant to be controlling the Wegs. Im meant to be in medicated remission because my bloods have all come back good, but I keep getting all sorts of pains in the legs, major fatigue and lumps in my legs an body and my nose also burns alot. (not sure how else to describe it). Now Im being told I have Fibromyalgia, Im so frustrated and confused. Was pleased I got to remission stage but its all bitter and sweet. Still on 9mg of Pred and lowered to 20mg of Methotrexate.
cheers Col 23:rolleyes1:

[Jack]

My guess would be that he is classing you as in remission because of the blood test results, thinks you should now have no symptoms so has come up with a new diagnosis. Perhaps he does not realise that you can still be showing Wegs symptoms with normal blood results.

I always assume that symptoms are due to Wegs unless proved otherwise and have not been far wrong. The chances of contracting another condition (apart from infections) in addition must be quite low.

[elephant]

Col, I am on four medicines to keep me in remission and sounds like I will be on them for a long time too. Col, I agree with Jack. I think your WG is not controlled, so glad you are contacting the VF monday. Just remember one step at a time.

[renidrag]

I haven't been on for a while, at least to write, but let me share for a moment. I was diagnosed in August 09 with lung involvement only. February 10 I was off prednisone and June I was and remain drug free. However, the damage I took along my so far short journey with this hideous disease has put me on medical disability. Like some, the neuropathy in my legs is debilitating. Along with COPD, I am not able to do much for very long. And yet, when I read all the stories and questions posted, I feel guilty that I am actually doing very well. I am in remission with no drugs other than Coumaden because of DVT and Calcium for bone loss.
I thank all of you and think every day how lucky I am and pray for a breakthrough for a cure.
Glad you are back Jack, hope all is well.
Dale

[Jack]

No need to feel guilty about doing well, I'm sure everyone on here is very pleased that there are success stories as well as all the usual problems we hear about. Sorry to hear that you have picked up some permanent damage along the way, but without ongoing Wegener's attacks there may still be room for some improvement or refinement of medication. I think Tramadol has helped a little with the pain in my legs and inhalers for the lungs, but it is still far from being a cure.

[Col 23]

Thanks for your replies , Dale glad to hear you are doing well although the damage sounds pretty tough to live with. Jack I was prescribed Tramadol and Mobic (anti inflammatory)what is your recommended dose just out of interest? I try not to take it unless cant cope with the pain any longer. I thought it worked okay too. Thanks for your comments today and before, been really helpful even though havent been participating much in the last few weeks. Thinking of you all.
cheers Col 23

[Jack]

The Tramadol I take is 100mg slow release twice per day. I was told to take it on a permanent basis because the effects build over a period of days. I'm currently considering asking for an increase in dose because I still find things difficult first thing in the morning and then again if I sit for too long. Or perhaps I should just work my way through it. I do try to minimise the drugs I take, but I need to be able to walk. ;)
I have no experience of Mobic, but my renal clinic tell me to avoid nonsteroidal anti-inflammatories.

[drz]

I was diagnosed October 23, 2009 after battling a two month "sinus infection". I was in the hospital with my "sinus infection" the first week of September 2009 & had clear lung x-rays. By October 14 my lungs were full of nodules and after the C-anca test the rest was history. I had no kideny involvement in October 2009 but was back in the hospital in November 2009 with some kidney involvement. My creatinine was 2.3 when discharged from the HP was 1.3 in March 2010 and was 1.4 today. I returned to work part time in December 2009, working from home & full time in February 2010. I am an Administrative Law Judge so I do not do strenuous work. My numbers have improved over the months since my diagnosis to the point a VF recognized specialist stated I was in remission April 05, 2010. I am only going by what he said but my experience is remission is just that the disease is not active, that you still have to deal with what WG has done to you. Kind of like what happened after Katrina hit the coast. The storm was over August 29, 2005 but Mississippi is still rebuilding. That is how I view remission. WG damaged my hearing, completely destroyed the nerves in my right foot pad to the point I cannot feel with my right foot, killed a toe on each foot, cause me to go into congestive heart failure, and ravaged my kidneys and sinuses. I am at the stage where after six months of the standard treatment (cytoxan & preds) my specialist and rheumatologist are conferring to move me to Imuran and begin the gradual stepdown off prednisone. I dont know if it can be achieved with or without drugs but it seems to me first phase of remission is the repaif what has happened to you. The second phase may be getting back to normal. I dong know. The one thing I do know about WG is that it is much like the legal world----nothing is what it seems, there is no book to go by, the only constant is change, & it is wildy unpredictable and should be addressed on a case by case basis. You cannot put WG in a box and you cannot define remission in broad terms it is different from case to case.

When you say the Wegener's killed a toe on each foot, did you have to have them amputated? Did the neuropathy ever improve with treatment?

[gwenllian111]

Someone told me that those who have serious health conditions, are also the biggest risk takers when it comes to their health.

I guess i'm a bit like that, especially when it comes to taking pred.

After my initial diagnosis in 1995, I maintained remission for 18 months. Therafter, I developed tracheal stenosis - but apart from that, was feeling 'ok'. It was only after having my children, that my immune system really kicked back. No more children for me, after each pregnancy, I feel as if a little part of me fades and I need every ounce of strength i have now to give the children I have.

I know this sounds weird, but do quite a few people actually 'die' of WG? Is it quite rare for WG to actually kill patients nowadays?

[Jack]

Unfortunately Wegener's patients do still die of their illness, we have had three occurrences here on the Forum over the past couple of years. However, this is often due to poor treatment which is the main reason why we bang on about finding a specialist to oversee treatment. Sometimes, it is simply due to intolerance of the drugs used for treatment and there are still very few alternative options available.

[Doug]

About 8% of weggies die, something we each need to keep in mind on those days it's easier to ignore symptoms instead of seeing a doctor. Yep!

[elephant]

Like Jack stated most of those 8% who die were not medicated correctly or died of complications ( infections, organ failure/damage).

[Sangye]

And that doesn't count undiagnosed.... Wegs is a deadly disease if not treateed properly.

[elephant]

I was thinking about that the other day, how many others who have died from this WG and the death was passed off as something else.

[Sangye]

Yes, or only dx'ed on autopsy. The doc who dx'ed me said that happens a lot.

[JanW]

Two people on the forums have died just since I've been on here -- and I only joined in January.

[jola57]

These unhappy events bring home the reality of this disease. We can all die sooner rather than later, so make every day count and don't sweat the small stuff.

[Jack]

make every day count and don't sweat the small stuff.
That is enough for me. :)

[Doug]

I nearly died twice in the past seven years ("only" once from WG), and it has helped me to unburden myself of lots of clutter in my life, to focus on what counts. My pussycat and me: As long as we have food, shelter, a little affection, we are ready to conquer the world, slowly. I also require clothing, but that's for the comfort of others mostly!

Jan, I don't intend to trivialize those deaths with a joke, but to remind myself that in our unique community, we have joys, we have sorrows, we have days in between, yet, in the end, we have each other. I've shed some tears, yet I remember those two with affection. They have the answers to the hardest questions we each have to deal with: When will I die, and will it hurt?

[elephant]

Doug, in someways having this disease taught me what is really important. I was watching the Today show and one of the Osmond son's has MS and told the interviewer having MS was a gift. He realize's what is important in life.

[marta]

That is enough for me. :)

Ditto!!!!!

[jola57]

As stupid as it may sound I wish more people were faced with adversity to put their and other's lives in perspective. The world would be a much nicer and safe place.

[Doug]

As stupid as it may sound I wish more people were faced with adversity to put their and other's lives in perspective. The world would be a much nicer and safe place.

Hugs and kisses! My sentiment exactly!

[Sangye]

I wish it were true that adversity inevitably changed people for the better or put their lives in perspective. I know many people who struggled with something like cancer and were changed by it for a short time. As soon as they felt better they went right back to their old habits. Most people do. And many people only become more resentful and bitter when faced with adversity.

Adversity doesn't change someone from a pessimist to an optimist, or from a reactive person to a less reactive one. It doesn't do anything unless one is highly motivated to make deep and lasting changes.

[JanW]

I agree with Sangye and tend to think that adversity really only brings out more of what you are inside. I'm dealing with this disease it exactly the way I would have expected to, for better or worse.

[elephant]

I found out that there were a couple of elementary teachers who went through some tough times with breast cancer, and they were the meanest teachers there. I could not believe it! You think they would show more empathy and compassion toward the kids???

[Jack]

I was in hospital with a man who had lost his arm and a lot of the use in his leg. He was the most bitter individual I have ever met!

[jola57]

I have always looked at the world with rose colored glasses and will do so untill the end.