anyone ever had "Nephritic Syndrome".....? ( kidneys)

[Kimbangu]

Hi I am a newcomer, diagnosed in Nov 2009. So far mister Wegener has confined his attentions to my kidneys and hearing. No respiratory involvement....yet......

I had my 3- weekly blast of cyclophosphamide a couple of days ago and took the opportunity to look over my notes while I was in hospital. I noticed that there was a new entry regarding my kidney function. It said I had "Crescentic Nephritis". I have done a bit of research on this condition, I know what it is but I haven't seen any mention of a connection with Wegener's. So is this the normal way that Wegener's attacks the kidneys?

Creatinine 104, yet I have very high protein in urine. Over 3000. I thought this was just a "dipstick " test but apparently they ran a full test and it's 3300. ( milligrams/ltr) It looks like the cyclophosphamide isn't working and if they can't get me into remission soon, they'll switch me to Rituximab.

Has anyone else been down this road?

Rituximab... I always think it sounds like a character from "Star Trek Voyager"..........

[Jack]

I think this is the usual symptom of Wegener's attacking the kidneys, but I'm only familiar with the term "Nephritis". Since the docs are aware of your condition and your results don't look too bad at the moment, I would think they will be able to keep it in check. In my own case, my kidneys were well gone by the time I was diagnosed so it was all a bit too late. :(
You are in the very early days of treatment at the moment so there is still plenty of things to be tried. It took me 5 years to gain remission and that was with the help of a vasculitis research group, but a lot has been learned since those days. :)

[elephant]

I had silent kidney damage, but actually I did complain of lower back pain. I was a track star back in high school at age 14 and the coaches thought I pulled a muscle back there so they were training me with weights to keep me strong. Well just like Jack it was too late and I ended up eventually getting a kidney transplant. The diagnosis they made was rapidly progressive glomerulonephritis. Back then they did not diagnosis me with WG, they knew whatever I had was autoimmune....

[moyan]

Thanks all, another thing that should be done regularly! The wanted urinesample 2 years ago when dx and since none! Should I ask all 7 docs to require it? :)

[JanW]

My rheumo takes my urine every other week and says he will at least for a year. Only time they won't do it is if a woman is menstruating.

[Sangye]

Moyan, I don't have kidney involvement, but my Wegs doc gets a urine sample every time I see him (every 3 months). When I was on ctx, he ordered one every 2 weeks. One doc should be overseeing all your care (a rheumy) and ordering regular urine samples. You don't need every doc to do it, since they can all get the reports.

Kimbangu, "Crescentic Nephritis" is Wegs. "Nephritis" means kidney inflammation. "Nephritic" is the adjective to describe an inflamed kidney.

Like Arthritis and Arthritic: "I have arthritis, so my joints are arthritic."

[moyan]

Thanks Sangye, I have come to understand that the doc I have had for 2 years is not capable of keeping track of what goes on with me! Hence I am looking for a more allround doc. Seeing a rheumo on Wed and have high hopes.

[Sangye]

I hope it goes well, Moyan. You really deserve to have a great doc.

[elephant]

Wish you well and good luck Moyan. You deserve the best!

[moyan]

Sometimes I get so crossed: Nobody told me at the hospital to drink a lot of water and why!! A nurse told me the pills were chemo, but what did I know! Only when I bought the first at the pharmacy did I know, but still not why.

[jola57]

moyan, who are you seeing?

[moyan]

Same as you. X will drive and I have to look up where the heck the doc is :) Handidart only goes in the morning and I have to look at parking before I drive, hard to walk.

[jola57]

What did you think of him?

[moyan]

What did you think of him?
Hi there. A very pleasant young man, but I had a feeling I ockupied his timn unnessecarily (worst word to spell :). Wrote you yesterday, but must have landed at wrong address. Thank you for sharing, but I don't think he is for me.

[Sangye]

Moyan, I've had that happen with some docs who turn out to be just fine. Maybe they're having a bad day or are distracted by another patient. Unless a doctor is openly rude, I give him/her 2-3 chances.

I had a great dermatologist in Arizona. I'd seen him several times for the leg ulcers and he was always very patient, warm and compassionate. One day he was like a completely different person-- angry, critical of me, impatient, etc.... I was crying during the appt out of frustration and was unable to express myself. I couldn't believe it was the same doctor I loved so much. He never would've let me cry like that! My therapist suggested I give him another chance since it was so odd. I did and he was wonderful again. I told him how I felt about that other guy and he sincerely apologized. I saw him many more times and he was never that way again.

[jola57]

Hm, did he have many patients in his office. He is usually very nice to me. But one thing is true, he is not a weggie specialist. Give him a couple of tries befor looking further.

[elephant]

Moyan, if this guys doesn't work for you hope you find one that fits you. How are you feeling these days?

[moyan]

Hi Jola, he was very nice. I just felt awkward not having any real problem. And they were busy, very busy and late. But sure, I'll give him another try. Only...my neighbour had a severe reaction on the flushot, still can not move arms right and difficulty walking. She was sent to a rheumo at Vancouver general and that is the same hospital where my lungdoc, who has some weggie patients is. We will see. She, by the way is now on pred.

[moyan]

Hi Elephant, how are you these days? So many problems and so many laughter!
I am tapering preds for the first time in 2 years!! Hm, have been going down 10 mg about every 6 months, but now the real tapering thanks to you and others here. Just wonder how I should feel different, LOL.Taking bloodwork more often to be on top, I hope.

[Sangye]

Moyan, it's okay to make an appt with a new doc even if you're not having any problems. It's actually MUCH easier to start that way. They can get a good history and see what you look like on a better day.

I recently got a new PCP. I didn't have any real reason to see her but just said I was there to "establish care." She's great. Because I didn't really need anything, we could talk about the diagnosis, ongoing symptoms, treatment, etc.... Now I can go back for smaller things (or bigger things) and she knows me better. I lived here 1.5 yrs without a decent PCP.

[elephant]

Moyan, I am not doing too bad. Can't wait to get my gallbladder out! I think I will feel better. Still have sinus issues, but not getting worse. Moyan, I too recently got a new Internal doctor, after my last doc told me people don't die from Gallbladder disease. My sister almost died ( her gallbladder was going to burst) and a family friend recently died of them same thing. So, that's when I decided it is time to find a different doctor. :)

[JanW]

I've got to get a new PCP too. Sangye did you get a recommendation from JHU, or just find someone on your own?

[Sangye]

Wow, that doctor was an idiot. If any organ abscesses or ruptures it can be fatal. Everyone knows that. Except for him...

[moyan]

WOW. Did you tell him? The scary part is, I would definitly have believed him! Raised when docs were made in heaven!

[Sangye]

Moyan, your comment reminded me of something I learned in chiropractic school. That was in 1995, so subtract a few years: Seniors grew up in the era of "Doctors Orders." They're accustomed to their doctors telling them what to do and don't expect explanations. Baby Boomers grew up with a "Question Authority" mentality. They demand explanations and for doctors to treat them like equals. Generation X-ers are much more like Seniors. They "rebel" against their Baby Boomer parents and are less likely to ask for lengthy explanations. They just want to know what to do.

Of course these are generalities. (Your results may vary) But I was struck by how accurate it was in practice. I explain everything to everyone regardless of age. The ones most interested in the details were usually the Boomers.

[moyan]

Thanks Sangye, that sure gives perspective :). As you know, I have hardly ever needed a doc, so when this started I was 5 years old again:) This site with so much knowledge has put matters in place for me, but still some reminisents(phonetic)

[elephant]

No I did not tell the doctor, I was so furious...I almost blew my granuloma's! This was suppose to be a good doctor....but I think this doctor has issue's.....I think this particular doctor is burnt out and not interested in being a doctor. I live in a small town so I kinda know what's going on....so at that time is was best to keep my mouth shut and move on. Usually I have no problem telling a doctor how I feel, but I couldn't on this one.....

[Sangye]

I understand the small town thing. Glad you knew better than him... and didn't bust your granulomas. :D

Jan, all my docs except for dermatologist and PCP are at JHU. The dermy is awesome--no need to go to JHU. He also doesn't need to communicate with my docs there. Straightforward.

I didn't want a PCP at JHU because I live 1.5-2 hrs away. I was going to a local JHU outpatient clinic of PCPs but they were totally disorganized and I never saw the same doc. I kept asking friends for recommendations. I don't think it's necessary to have a PCP who knows Wegs (good luck finding one!), just someone who's willing to work with your team and who really listens to you. My PCP asks me what I think is needed when I have a problem-- eg blood work, antibiotics. She respects how much I know about Wegs and how it behaves in my body.

[Jack]

My PCP (we use the term GP) is pleasant and willing to discuss symptoms and treatment at length, but more importantly he does what I ask. He knows little about Wegener's, but that does not matter.

[moyan]

I bet he knows quite a bit by now :)

[Shannon's faith]

Your case sounds just like mine, although I have not seen a ENT yet for hearing since I am waiting on a confirmed diagnosis from my nephrologist. I will be having a biopsy in 2 weeks of my kidneys. Can you please tell me what your symptoms were before you were diagnosed? My kidneys are suppressed and based on other testing my doc is pretty sure that I have Wegener's.

[moyan]

Hi, only after finding this site, did I realize the stubborn sinucitis and plugged ear were signs of WG, found on bloodwork having affected the kidneays badly. I thought I was perfectly well.

[Shannon's faith]

My sinusis are plugged as well, and so is my ear. What is your prognosis?

[moyan]

No Weg specialist in BC Canada, so trying to figure out myself. My doc in charge knows less than I , so have to find one after 2 years that will ask vasculitis foundation docs how to proceed. I wish you all luck. Now tapering preds after 2 years!!!! so hope that will ease some discomfort.

[elephant]

Shannon are you on any medicines right now? You sound like me...ears clogged up, sinuses stuffy....I have left eye pain, some tingling to some fingers on/off, ect....you need to get started on something....

[Doug]

Thanks Sangye, I have come to understand that the doc I have had for 2 years is not capable of keeping track of what goes on with me! Hence I am looking for a more allround doc. Seeing a rheumo on Wed and have high hopes.

For those of us who had rheumatologists involved in our treatment early on, it's hard to believe anyone diagnosed with WG hasn't had a rheumatologist involved in their treatment early on! I hope you have a productive relationship with this new doctor since you feel your current doctor isn't serving your weggie needs and requirements, moyan. As you can read elsewhere in this forum, you truly have to have an active involvement in your care to assure you move forward toward health or, at worst, don't lose ground because of preventable error. When you have that right doctor on you team, you feel blessed! Believe it!

[Doug]

Moyan, I am not doing too bad. Can't wait to get my gallbladder out! I think I will feel better. Still have sinus issues, but not getting worse. Moyan, I too recently got a new Internal doctor, after my last doc told me people don't die from Gallbladder disease. My sister almost died ( her gallbladder was going to burst) and a family friend recently died of them same thing. So, that's when I decided it is time to find a different doctor. :)

Wow! Again the issue of taking an active role in your medical treatments and doctor selections proves out! When one's life can end because of an ignorant or inept doctor, it becomes much easier to say goodbye to a doctor and expand one's search for a doctor who understands the nature and seriousness of one's medical needs! Elephant, any doctor who tries to flamboozle you hasn't read this forum! Good for you for setting, once again, a good example for newbies on this forum.

[Doug]

No I did not tell the doctor, I was so furious...I almost blew my granuloma's! This was suppose to be a good doctor....but I think this doctor has issue's.....I think this particular doctor is burnt out and not interested in being a doctor. I live in a small town so I kinda know what's going on....so at that time is was best to keep my mouth shut and move on. Usually I have no problem telling a doctor how I feel, but I couldn't on this one.....

Will anyone mind if I tell elephant to kick ass?! Whoee! You do it, elephant! Sometimes the doctor gets the point without physical manipulations from your shoe. When you leave a doctor for another, it is nice to let the former doctor know why you need to leave, but the reality is weggies have more important things to accomplish than displays of social nicety toward a doctor who doesn't get it: weggies can die from ignorance, poor doctoring, indifference, things other than the primary disease of WG but more likely to occur because of the disease and its treatment.

[elephant]

Thanks Doung for the compliment. Did you have a great time with family? Good food?

[Doug]

My PCP (we use the term GP) is pleasant and willing to discuss symptoms and treatment at length, but more importantly he does what I ask. He knows little about Wegener's, but that does not matter.

That's been my personal experience with nurses and non-specialists involved in my health care, too, Jack. They have shown genuine interest in learning more about this disease, whether from the internet or my own experience with the disease. Much like we learn medical terms that help us discuss medical issues with our doctors, the nurses and non-specialists show they are willing to learn more about my circumstances so they can better serve my medical needs. I can't imagine the doctor or nurse or physician's assistant who can function in their professions without curiosity and genuine interest in oddities like WG among their patients. This forum, however, brings out horror tales where this level of professionalism doesn't exist, and how one of our own suffered needlessly.

[Doug]

Thanks Doung for the compliment. Did you have a great time with family? Good food?

Any time, elephant. You are one of my favorite naggers (I know we shouldn't have favorites! ha!), and I especially enjoy your updates for their straight-forwardness and good common sense!

Oh, I had a great time with family. Louie the cat thinks all his aunties and uncle are wonderful. "Why can't you be that nice, Doug," he says with his eyes. "Well, Louie, when all of them are gone, the beatings start again. You've been warned." Erm...no, that wasn't what I told him, but he was my big concern since he's shown little tolerance for strange people so far. The first thing my Seattle sister did was lean over, stick her hand out-palm up-, and say "Aw! Here kitty-kitty!" Louie walked right up to her. "You little turd! You never come to me and I'm the one who feeds you and provides you opportunities to have an enriched kitty environment." Children! Even the fuzzy ones! They are so unappreciative of us!

[Sangye]

LOL-- that's hilarious, Doug. My "kids" turn on me when visitors come over, too. They beg and beg to get treats, belly rubs, whatever. They act like they're utterly deprived of love! Beasts.

[elephant]

I hear what your saying Doug and Sangye....my in-laws are coming to watch the kids while I go and get this obnoxious gallbladder out March 17th. They will have Sophie so spoiled that she will want to go back home with them.

[Sangye]

I think we should have an online Going Away party for your gallbladder, Elephant. It's time we got serious about cupcakes.

[elephant]

Sounds good to me, I might as well start eating cupcakes and whatever I can get my hands on that is yummy. I was told I will have to be on a low fat diet for two weeks and slowly introduce fattening foods slowly. I will have some real fast bathroom trips too....here goes the singing toilet!

[Lightwarrior]

Sounds good to me, I might as well start eating cupcakes and whatever I can get my hands on that is yummy. I was told I will have to be on a low fat diet for two weeks and slowly introduce fattening foods slowly. I will have some real fast bathroom trips too....here goes the singing toilet!

So we are going to "potty, potty, potty with cupcakes"? We're going fight for our right to potty!! "elephant is a potty girl" lol

[Jack]

Some people round here take too many drugs. ;)

[moyan]

I have been thinking and wondering if they all fill a function or are the docs indoctrinated?

[Lightwarrior]

Some people round here take too many drugs. ;)

Rotfl.. Yourso right Jack, to bad they are all toxic. I'm home today feeling weak as a cat, wbc 3.1 so I've stayed out of unit and worked in my office all week. I have to amuse myself :-)

[Sangye]

LOL-- you guys are so funny. :D

[elephant]

Lightwarrior, hope your feeling better. We are a little toxic, keeps us going.....

[Jack]

I have been thinking and wondering if they all fill a function or are the docs indoctrinated?
Each time you see a new specialist they do like to add some drugs of their own to the mix. You have to keep en eye on this or you end up doing nothing but taking pills, each one with its own side effects and potential for interactions with the others. Drugs are pretty well tested here in the UK, but I bet no one has ever tested the particular concoction that I take!
I review the drugs I take all the time and try to reduce the number of different sorts or the dose. I think I'm taking the minimum I can get away with.

[elephant]

I agree with Jack, if you can get away with taking the minimum prescription then that will benefit you in the long term. Of course you doctor has to to be on board. Since I am a RN, I tend to play doctor...which is not good....some of the doctors know this...but I have been perfectly honest with them and explained why I will not take certain drugs...I take all my WG medicine's ...or I take for instance Nexium every other day...and the doctors know this...

[Sangye]

I'm the same way. My docs know I'll take the Wegs drugs but will either ignore or self-regulate the non-Wegs drugs. They're okay with that. We can't have a doctor with us every day so we have to figure out how to work with our non-Wegs drugs. Of course, you really have to know how your drugs work to do that or you can hurt yourself.

[jola57]

Same here, I take only the most necessary meds, and while I don't regulate the mtx I do regulate everything els. Both my rheumy and my family doc knows and trust my judgment.

[Sangye]

My blood clotting was off last week (not clotting enough) and my hematologist said "Take vitamin K." I said "How about if I just eat more veggies?" Sheesh. Not everything needs a PILL.

[jola57]

exactly, I am glad he didn't put you yet on another high tech med to counteract the other med that couteracts the first med to stop the action of the latter med. Phew,

[elephant]

I know its like a domino affect to infinity!

[Sangye]

I always feel like I have to fend off the doctors who are determined to stuff more pills down my gullet. They really do get out of hand if you let them.

[Doug]

Where doctors in the US (at least) get freebies from drug companies as an inducement to try them on patients, there is a "write them another prescription" mentality. Sorting out the mix, keeping the doctors involved (!) but also reserving the right as patient to try an alternative to more pills seems the best bet.

My motto is : The fewest drugs, in the smallest efficacious doses, for the shortest time possible. I'm happy to read comments by Jack, Jolanta, and Sangye, for example, that support that approach!

[Sangye]

Excellent motto, Doug.

[Lightwarrior]

Doug,
I support that approach also. As a nurse I could live in a cave and know when drug reps have been to the Doc's private offices, the use in a hospital setting of the drugs increases dramatically as do discharge prescriptions. I would add to your motto, fewest docs possible..limiting to the most qualified (WG specialist running the show)

[Sangye]

How are you feeling, Lightwarrior?

[Lightwarrior]

Still very weak, I can almost feel my Krebs cycle conk out. Leaning on my cane or a counter or just sitting down has been working for me when my back hurts from walking more than 20 feet or standing more than a minute until Friday. My back hurts unless I am sitting in a chair with strong support. Chewing a bite makes my jaw hurt before I am done (what a diet plan?) The general consensus among my providers is that my back hurts secondary to the extra weight from Prednisone (I was already overweight and had degenerative disk disease going on). I just had to take a small rest because my fingers and hands hurt from typing. I went to opthmalogist last week to get a baseline, and because my eyes tear all the time, sometimes my face is wet. He said it is because I have dry eyes and my body is overproducing to compensate, no Wegs involvement per him. Yesterday and today my nose burns at times when I breathe in, only small amount of bloody goobers. Since I am on 250 Cytoxan and 45 pred still I'm thinking it must be side effects. Weg should be controlled on these doses right??? I considered infection, no fever and I take 800/160 Bactrim Monday, Wednesday and Friday. Kids all had stomach virus a week ago. I'm still trying to wrap my brain around how do I know when I'm better? How do I know why I feel like dirt?

I'm also extremely tired of my body not doing what I tell it to do, I have always had this amazing mind-body connection. I have been coating my adhesion molecules in teflon so they won't clump toghether. I wonder what I'm missing at the cellular level that needs my own version of guided imagery??

Blah, blah, blah..even I'm tired of listening to me. Thanks for inquiring.

[Sangye]

Lightwarrior, it helps me to think that I'm reporting symptoms, versus complaining. Your post has the energy of reporting and trying to solve your issues, not moaning (although that would be fine, too--this is a forum to express whatever you need to).

It is possible to be on ctx but not have it work to control the Wegs. Every drug doesn't work for everyone. You have overall weakness, joint pain, excessive tearing, nose burning and bloody nasal discharge. To me that sounds like active Wegs. It's classic that each of your specialists attributes different symptoms to non-Wegs causes, but no one is looking at the whole picture. I think you need to talk to your rheumy and get a Wegs specialist on board.

[Lightwarrior]

I just used the contact part from the vasculitis site to inquire of Cleveland Clinic how I would go about getting a consult between Dr. Langford and my Rheumy. Your nagging is helping, thanks.

[Sangye]

Glad you contacted them! The VF is very good about emailing you right back. If you don't hear back tomorrow, call them.

You can also call Carol Langford's office yourself and get the ball rolling. This is the number from the VF site.
Phone: 216-445-6056
Web: www.clevelandclinic.org (http://www.clevelandclinic.org/)

[elephant]

Lightwarrior, you wll love Carol Langford...I am seeing her again in June. I agree with Sangye with above symtoms that your having...
My local Rheumy called Carol Langford when I was in the hospital...I was falling apart and my local Rheumy was scared...but I am thankful to have such a smart/nice local Rheumy and still get to see Carol Langford at the Cleveland Clinic.

[Lightwarrior]

Thanks, If I'm going to be a good nag apprentice I better start taking advice. :-)

[Lola]

It took me awhile to realize that reporting my symptoms is not whining. I found the Birmingham Vasculitis Activity Score Modified for Wegeners tool. Either the original scoring tool was developed at the U. of Birmingham, Edgbastan - West Midlands, UK. Go team, Jack!
And/or it was modified for use in Wegener's in the UK.
At any rate, once I read and digested it, the light bulb went off in my head and I realized that many of the bizarre and seemingly disrelated symptoms I was having were part of the disease.

It wasn't until I took notes with me to the Rheum. appt.s ...doh...and made the dr. aware of what was going on with me - did I move on to a different drug when necessary.

Please forgive me if you all know about this - I didn't. The link is below.

http://vasculitis.med.jhu.edu/research/bvas.html

[jola57]

Lightwarrior, the feeling you have has and is shared by all of us, at my most active weggs time I could walk half a room length befor stopping, to wipe a counter I had to change hands 20 times, I walked up my stairs to the bedroom on all fours and slid down on my bum like a yearold. I lifted tea kettle with both hands, Couldn't take baths only showers for fear of not being able to get out of the tub. I had red/pink eyes, pain in all muscles and joints. Need I go on? I felt like a a piece of meat going thru the grineder. But when I was finally put on the right dose of prednisone and cyclophosphamide, all the symptoms gradually diminished and were finaly gone (well mostly). It took time and I honestly did not think I would function normally again. Keep heart, you will get there.

[Sangye]

Lola-- thank you for posting the link to the BVAS. I've meant to do that for awhile. It's one of the main tools Wegs specialists use to guide their assessment and we Weggie can certainly use it ourselves. For those who are new to Wegs or would benefit by having a checklist, you can do the BVAS regularly (eg once a month) and bring them to your doc at each follow-up.

[Jack]

BVAS - Birmingham Vasculitis Activity Score.
A system developed at the hospital where I attend - I've met many of the doctors on the list of authors. :)

[Lightwarrior]

Lightwarrior, the feeling you have has and is shared by all of us, at my most active weggs time I could walk half a room length befor stopping, to wipe a counter I had to change hands 20 times, I walked up my stairs to the bedroom on all fours and slid down on my bum like a yearold. I lifted tea kettle with both hands, Couldn't take baths only showers for fear of not being able to get out of the tub. I had red/pink eyes, pain in all muscles and joints. Need I go on? I felt like a a piece of meat going thru the grineder. But when I was finally put on the right dose of prednisone and cyclophosphamide, all the symptoms gradually diminished and were finaly gone (well mostly). It took time and I honestly did not think I would function normally again. Keep heart, you will get there.

Thanks Jolanta, I needed that encourgament.