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not2shortsheri
07-27-2009, 09:49 AM
Hi guys! I'm here on this with my roommate, who was diagnosed with WG 14 years ago. I've been living with him for almost 5 years now. It's been a pretty hard road for him.

Hes on alot of medicines, prednisone, which he has been on for 14 years, lots of blood pressure meds, and stomach meds. He tried the cytoxin chemo about 13 years ago, but was never able to complete it.

Last year he had to have half of his right kidney removed due to an infection. 5 years ago, he had to have part of his right sinus removed. Nowadays, due to the sinus surgery, he isnt able to taste or smell anything. That has hit him the worst of all. The doctors say not much hope in regaining the taste or smell.

He has had two cataracts. hes had surgery to remove one, and the surgery for the other is coming up soon.

Recently, we've been hit again with nodules in the lungs. Thats mostly why I decided to join this forum, to find out more about these nodules. None of the doctors are really explaining them, or giving us much info. Hes very worried. And I am as well.

My roommates name is Brian, and I'm Sheri. Its nice to find a community for us, we've not yet met anyone around here with WG.

crackers
07-27-2009, 10:34 AM
hi sheri and brian.it sounds like brian has been having it tough for quite a while now.i'm glad you found our weggie family.while i've had no personal experience of nodules there are those amongst us that have.i'm sure that you will receive advice and information from the wiser ones amongst us.i'm not surprised that you haven't come across another wg sufferer,we seem to be spread across the four corners of the earth but very thinly.if you read through the other posts you will see we only recently celebrated the first official meeting of two weggies(our term for us).so please come back soon and keep us informed of brian's progress.
john. ps. where on the planet are you?

Sangye
07-27-2009, 10:37 AM
Hi Sheri (and Brian),
Nice to meet you. Wow, it sounds like he's had a rough time. I didn't know they could remove half a kidney.

Where do you two live? Does he see a Wegs specialist? I can't believe a Wegs specialist wouldn't have an explanation of lung nodules, and wouldn't give you all the info you want. Regular specialists, yes, but the Wegs docs know their stuff.

Jack
07-27-2009, 09:35 PM
Hi,
Sounds like his Wegener's is not under control. What immune suppressing medication is he taking in addition to the steroid? He should be taking something else because it is well known that steroids alone will not keep the disease in check unless it is in remission. If he is not doing so already, he must see a Specialist before any more permanent damage is done.

Doug
07-28-2009, 04:05 AM
You mention Brian wasn't able to complete the Cytoxin therapy (see Jack's question above: very important!). Was it a matter of stomach issues? I know I had vomiting on a regular basis related to that particular drug. Has he asked his doctor about prescribing something for the stomach upset? I guess I should stop at this point, not knowing in particular what caused his doctors to stop Cytoxin.

not2shortsheri
07-30-2009, 08:41 AM
Lets see. He took started the Cytoxin about 11 years ago, only managed 3 months of it.

He sees a nephrologist, a pcp, a rhuemy, an ent, and a lung doctor. His nephrologist has diagnosed his wegeners to be in remission. I'm not a doctor, but I honestly don't see how its in remission. She had him taper off the prednisone, but he started hurting when he got down to 10mgs. Any further, and he can't breathe, he can barely walk, and he gets constant bloody noses. At the moment, hes somewhat stable on 10 mgs of it.

He takes no other medicine, and never has for the wegeners. For a long time, he just sorta lived with it. Didn't see his doctors, didn't care about anything. I found him and kicked his ass into gear. But its difficult going.

He used to live in Texas, but we both now reside in NC, on the east coast. All of our doctors are in Virginia Beach, Va. We drive over an hour away to see these doctors once-twice a month.

Sangye
07-30-2009, 09:11 AM
Sheri,
Some of Brian's symptoms might be due to being on pred so long, and/or being out of condition from not moving much, etc.... But overall, it sounds like his Wegs is quite active. It's hard to tell if he just never followed his doctors' instructions, since you said he didn't even go to them for so long. But losing part of his sinus and he was only on pred??? Now he has new lung nodules, which is a sign of active Wegs.

Pred alone is not enough to control active Wegs. The mortality rate when using pred without other immunosuppressants is sky-high.

I suggest you get to Johns Hopkins in Baltimore to see a Wegs specialist. They're among the world's experts in Wegs. You might think VA is too far. I drive 1.5 hrs each week (sometimes more) to JHU. When I lived in Arizona, I drove 3 hrs (one-way) to Mayo Clinic. With Wegs you do what you have to do to stay alive and keep your body functioning as well as it can. He's been unbelievably lucky to have gone this long without treatment. I wouldn't push that luck, though.

Doug
07-30-2009, 12:10 PM
Gad! Sounds like an active case to me! Kick his butt for me, too. He should know better. (Of course, I had to be transported by ambulance to the hospital before I acknowledged I was sick with anything the first time I was hospitalized, then diagnosed with WG. In your roommate's case, he doesn't have the excuse of ignorance: this time around, ignoring the symptom is stupidity.:mad:)

Jack
07-30-2009, 06:31 PM
I'm very concerned about the condition you describe and can only repeat the previous comments about immunosuppressants and mortality rate. This was a near 100% fatal disease untill an effective treatment was developed and he does not seem to be receiving it at the moment.

10 mg of Pred alone is the sort of treatment given to someone in full remision who is showing no symptoms. Even then, it would be uncommon.

Doug
07-31-2009, 12:56 AM
Is there an issue of being able to afford medical care, or prescriptions? Has he been dropping medications as the prescriptions run out? Does he work where he has health insurance? I just don't understand how your roommate can be at the point he is. You say he's seeing quite a variety of specialists, but has he had depression in the past or does he talk like he might want to let Wegener's take its course, i.e. kill him? Have you brought up the concerns we've expressed in this forum with him and has he given you responses that suggest this might be his plan? Is his family aware of his condition? Has he had counselling in past to help him accept the magnitude of this disease, with the knowledge that people can live relatively normal lives with it for decades if they pay attention to things like symptoms of a full flare and get medical attention in the timeliest way? Are there other family members or friends you can call on to help you help him? You needn't respond to this on the forum, but I hope you take these questions and answer them for your own sake and his. God bless and know we on this forum continue to care about you and your roommate. You are in the center of a very serious circumstance. Either his doctors are incompetent or he's not telling you everything they tell him because I can't understand how someone with full-blown WG symptoms can survive on 10mg of Prednisone alone and a whole variety of specialists, who presumably are aware he has WG, can be indifferent to him and proper treatment of WG flares. One final question: has he been bringing his symptoms to the attention of his doctors? If the doctor visits are follow-up visits, I presume there must be blood and urine samples being tested each time. Here's the final, final question: which specialist is the one primarily in charge of his WG care? If each doctor is working in the dark as to what the others are are doing for your roommate, it would be easy for each of them to think, "Oh, so-and-so, per the patient, is tending to the flare." See where I'm going with this: I wonder if your roommate might be telling the doctors he's on medications for the flare though he's not. Things just don't add up here.

Sangye
07-31-2009, 01:08 AM
Well said, Doug. All good points. A very serious circumstance, indeed.

Luce
07-31-2009, 02:18 AM
All fantastic advice from those above - please get your roommate to read these comments and take action now before it's too late.
I had been feeling like I had flu for 6 weeks or so, then coughed up a bit of blood which got me into the emergency room. From there I found I had holes in my lungs, was at stage 3 kidney failure and had this thing called Wegs which could kill me. Until this point I had insisted it was just a sore throat.
This disease can be incredibly aggressive at times, who knows when it will step up a gear and how long it will take before permanent damage is done to vital organs.

not2shortsheri
07-31-2009, 07:46 AM
Whew. Lots of questions.

To begin with, I go to every single doctors appointment he has. I ask the questions, and I tell them every single thing that I notice, even if its embarassing for him.

For a long time, he did just want to die, and was very suicidal/into cutting. Then I found him, and literally kicked his ass into shape. Course, hes gained weight from my cooking.. I dont let him exist on beans and rice =D. His family does know about his wegeners, but his mother is more of the beleive in the unnatural/heal your aura. Not that I'm saying that doesnt work, but she wants to remove him completely from his medicines and thinks that taking mushroom pills and guava juice and meditating over him will cure him. Two days without his pred and Bri is unable to move, in screaming pain, and has a hard time breathing.

We are able to afford all of his medicines/doctors. He gets almost full coverage for his doctors bills. We just pay the copay.

No single doctor seems to be in control of his wegeners. He used to see a different pcp, but we dropped her after shewouldnt take our phone calls for months after his kidney surgery.

His nephrologist is the one who diagnosed his wegs to be in remission. But, she only sees him during the good times, and hasnt seen him during a flare up, or nor does she really listen when I tell her about them. Most of his doctors tend to listen to me, since Im more forthcoming then he is, but she tends to ignore me! Very annoying.

His lung nodules concern me, but we havent been in to see our new lung doctor yet. Bri is only able to see doctors on Fridays, since he works Mon-Thurs.

Bri is on Prednisone, lisinopril, norvasc, and atenolol to lower his bp, which is exceedingly high. Every other month or so he does a round of antibiotics. He was on a gout medicine. Which is something he and I did not agree on.. I didn't think they ran enough tests to prove that it was gout. I was sure it was the wegeners attacking him, not gout. It would attack his foot for a few hours, his wrist the next, his fingers next, his knee next.. Always different places over the course of a couple days. He took the gout meds, and it didnt clear up, the meds made him sick. He upped his prednisone against doctors orders, and felt better the next day.

Bri is also in the habit of self-medicating. He goes up and down on the prednisone almost daily. One week he'll be at 7 1/2, then a couple days later be back to 10, then try to go down to 5.. Its very painful to watch him do this.

Once every 3 months his nephrologist makes him do labwork. His creatine levels are normally pretty high. For a while after the kidney surgery they were really high, but leveled back down a bit after a few months and the kidney healed.

Pulling facts out of my head here. Brian really wishes for the wegeners to be in remission, so he is constantly trying to pull out excuses for what it could be. The wegs ruined his life, his face, his body. Hes depressed, but refuses to take the meds for it. Getting him to see new doctors is like pulling teeth without pain meds. Getting him to see logic is even worse! its my hope to tie him to the chair and make him read your replies!

Sangye
07-31-2009, 08:37 AM
I imagine that many other Weggies in this group are as stunned, horrified and frightened as I am to read all this. It sounds like Brian is swimming in a sea of denial, depression and fantasy-thinking.

Regarding holistic treatment of Wegs : I'm a chiropractor and until I got Wegs, I rarely even took aspirin. It was nightmarish for me to even consider Wegs treatment. But once I knew the diagnosis and the prognosis if it wasn't treated (ie, 100% fatal), I accepted the treatment. I didn't love it, I hated it. I hated what it did to my body, my life, my job, everything. But I'm still alive and I actually have very little permanent damage as a result. You do what you have to do to stay alive, and pick up the pieces later.

His mother should know that there is no evidence whatsoever--not a single case study or bit of anecdotal evidence-- that discusses holistic-only treatment of Wegs. There are none that discuss partial holistic treatment of Wegs. NONE. Wegs is not RA or MS. Those aren't deadly, and when they're doing damage you know it. So you can use holistic remedies with and without drugs and have wonderful results. Try that with Wegs and you will die. I speak from experience. Before I knew I had Wegs, we were doing everything to boost my immune system, etc... and I was getting worse each day. I nearly died.

Regarding wanting to die : I understand. When I finished the chemo/pred, I thought I was done with the drugs. Then I was told I had to go on Cellcept, because the Wegs was still too active. At the time, I was so emotionally exhausted, so sick and weak from the drugs and the disease, that I didn't think I could do any more. I thought, "I'm just going to let nature take its course."

My doc worked very hard to get it through my head that Wegs doesn't work like cancer. It's not like it will proceed in a fairly predictable way, like they can say "You have about 5 months to live." Untreated Wegs is not likely to kill you quickly. It will kill you slowly, piece by piece. And if you change your mind and want to start the drugs-- if you're lucky enough to survive-- then all that damage is permanent. Untreated Wegs can and will destroy every organ--eyes, ears, lungs, GI tract, liver, brain, kidneys, etc.... He can cover his ears and sing loudly to tune out those facts, but it won't stop the Wegs from progressing.

Regarding his medications and self-medication : I'm sure most of us are just speechless to read this. Increasing and decreasing pred to that degree is a great way to permanently destroy his adrenals. That would require him to remain on steroids for life. It messes up every hormone in the body, and is an excellent recipe for depression. Decreasing pred abruptly like that is also a great way to induce a Wegs flare (or increased intracranial pressure-- that's another joy-ride from hell).

Regarding his doctors : Clearly he's falling through all the cracks here. No one is overseeing his Wegs care, no one is dealing with his mental health care, the neph is pretty useless, he's on heavy-duty drugs and it sounds like no one is monitoring them. If he were my brother, I would advise the same thing : Do whatever it takes to get him to the nearest Wegs specialist ASAP.

I believe JHU is the closest for you. They will not leave him to live like this. At my first visit there, the Wegs doc said, "I believe you, and your life can be better than this." He also said, "You'll never get back the same body you had. The disease and drugs have changed that. You have to grieve that and move forward, because while you can't go backwards, you can get a lot of your health back."

I'm sure that's true for Brian, too, but it can't happen just by you wanting it for him. He has to take responsibility for his own life. He's the one who'll live with the consequences if he doesn't.

crackers
07-31-2009, 09:33 AM
sheri please get brian to read these posts.it's scares the sh*t out of me to read them,hopefully it may have the same effect on him.this is not the flu,he won't wake up in the morning feeling better.i'm sure you know this but try to get brian to realise this also.my thoughts are with you both.
john.

Doug
07-31-2009, 12:22 PM
Sheri- I felt faint when I read what you had to say. I was overwhelmed. I had to take time out to think, to pray, to imagine what I could add to what we've already written you that would turn things around not only for Brian but for you. Bless you for hanging in there. I hope Brian realizes one day how much you love him to put up with his attitude toward his WG and his personal safety. Another person might have told him to march.

Families of Weggies oftentimes are the ones in denial because weggies in remission oftentimes look "normal", act "normal" even though they may have physical limitations that prevent them from taking full participation in family life. You are the one who gets it, who understands the seriousness of Brian's disease. Whew!

I want to tell you to keep his mother away from him, but that's not possible, practical, or likely so long as she doesn't do anything to cause him medical harm: were she to take over his "medical care", get a lawyer! No kidding. A good friend wanted me to stop taking the "poison" prescribed by my doctor and "cure" my WG with vitamins. "If I follow my doctor's course of action, I most likely will live; if I follow your vitamin approach I will die for sure." I challenged her. If you want me to die, continue trying to sell me on vitamins! There is NO CURE for WG. Perhaps in future, they will determine a cause, but, now, those of us with it are best off living in the present, dealing with it day by day.

Any doctor who medicates but doesn't do follow up is a quack. That's a strong statement, but I can't imagine Brian, in his present condition, going three months between doctor appointments. When I was working, I went so far as taking half a day or a whole day of vacation off, if that's what it took to assure I saw my doctors when they were available, not when it was convenient for me. That approach was easy for me because I live in a small town where specialists come to town to a specialty clinic from surrounding hospitals twice a month. If they need to see you when they aren't scheduled to be at the specialty clinic, you drive anywhere from one to four and a half hours to see them at their regular places of business. Now that I'm retired, I oftentimes schedule doctor's appointments out of town if I can get in faster.

Brian needs to get in the habit of putting his health first, now, because to neglect it any further is to end up disabled and unable to work. Or do sports. Or walk around the block. Or live: untreated, the disease used to take something like 92% of people with it within two years. Or do anything he likes to do. He may have caused himself needless, permanent damage already as it is. Kick his butt again.

I'm with you: gout, nonsense; WG, yes. Once you are diagnosed with WG, you need to regard every, that is every thing about your health in the context of WG. Your immune system is in a state of rebellion, is killing the host. Proper treatment brings down the immune system, suppresses it so the body can do as best it can to heal the damage from an immune system run amok. That treatment, though, has to be monitored closely (not every three months, but as circumstances demand- I was in a weekly cycle for a short time after diagnosis). More importantly, the weggie needs to tune in on those symptoms that signal WG for him.

I will stop now. Talk with Brian. He needs to be working with you. You can't save him alone. As a team, you will be better able to assess how efficacious each doctor's treatment is, dropping those who don't work with you, adding those who understand WG and the necessity of working with other doctors (yes!) to do the best possible thing for their patient. Any doctor who isn't willing to answer questions you pose, or to talk with another doctor Brian has about his condition and what he or she is doing from the standpoint of his or her specialty, or recognize you as the one who has her head on straight about Brian's condition needs to be kicked out the door. They will cause Brian more harm than good. If you had Brian's attitude, he'd be dead.

Also, please give serious thought to Johns Hopkins for treatment. Most weggies aren't so fortunate as to live that close to a major source of WG care. Reread Sangye's last posting. She isn't the only weggie who's gone there for treatment, but her remarks, wonderfully, compellingly written, are the nearest and easiest to relocate.

Jack
07-31-2009, 04:21 PM
Sheri, I read your post quite late in the evening and was horrified at what you had to say. I began to compose a reply, but hardly knew where to start and decided to put it off until morning. I now don't have to do this because I can add nothing to the excelent posts above.
Please take notice of them. I have nearly 25 years experience with my Wegener's and can assure you that none of what has been said is exageration or scare mongering. It is such a rare disease that doctors are often ignorant about its treatment. It often takes your own research and drive to push things in the right direction, but Brian is in no condition to do this for himself at the moment.

not2shortsheri
08-01-2009, 01:56 AM
So how does one get into JHU? Do you have to have a referral? Because I don't think I could convince any of his doctors to give us one.

and on a side note, my mother has relapsing polychondritis, advanced in her trachea. Shes been doing chemo for a year now, and we finally got her approved for a new chemo. 1 month of this chemo, and the polychondritis is starting to go into remission. I'm hoping that Bri will take a lesson from her and stick it out should they start a new treatment!

Thank you guys for all your replies. Very very helpful, i really appreciate it.

Sangye
08-01-2009, 02:18 AM
Hi Sheri,
Here's (http://vasculitis.med.jhu.edu/aboutus/appointments.html) the info to get into JHU's Vasculitis Center. They do require a referral. You only need one doc to refer, though. Don't assume that because his docs are generally uncooperative that they wouldn't refer him. They actually might be quite happy to have someone else take charge.

If they say no, you have two options. One, you can push harder. Being evaluated at a Vasculitis Center for treatment of a rare disease is certainly within one's rights as a patient. It costs them nothing to refer a patient, and if they truly have his best interests in mind, then they should be thrilled to have the input of Vasculitis specialists. Basically, they need to prove to you why they wouldn't refer him to one of the world's leading Vasculitis centers. That'll usually do the trick.

If they still say no, go to a new PCP, explain his diagnosis and concerns, and have him/her write the referral.

Waste no time in doing this. I'd get on the phone today and get a referral letter going. You'll need to gather all the patient info JH requests and then have it submitted. They'll take at least a week to process it and get you scheduled.

This isn't about jumping through hoops. They're extremely thorough. The docs go through every single page, read every report and diagnostic study. At my first appt, my doc knew my case inside and out, including all the dates of my hospitalizations, procedures, symptoms, etc... My case is pretty complicated, even for a Weggie. So this was very impressive.

Sangye
08-01-2009, 02:22 AM
I'm sorry your mom has RP. I don't know the current prognosis for it, but I recall it was not very good--worse than Wegs. I hope she's seeing someone who's treated it a lot.

not2shortsheri
08-04-2009, 01:14 PM
Thank you for the link. His pcp is going to start the referral.

Actually, I found out that an old friend of mine works at his pcps office. So hes actually going to do everything, and get the doctor to sign off. its great! easiest thing ever!

Doug
08-04-2009, 01:30 PM
Whew! Twice. (My message was too short.):)

Jack
08-04-2009, 04:23 PM
Great work Sheri!

Sangye
08-04-2009, 11:24 PM
Hot diggety! :D

GeorgiaInOhio
08-05-2009, 11:43 PM
Ok, I am VERY new here, and I only read the first page of this thread, but like jack said, I am SO SHOCKED and I had to just ad something in... Im sorry if this has already been mentioned or discussed, I just had to jump in.

The Cleveland Clinic has not only TONS of funding researching Wegeners, but they will FLY YOU TO THE CLINIC for treatment. THey have a program for those who have limited income, i know this because I am in the process of getting the funding myself. I am waiting because the crap insurance I have is giving me problems because the clinic "isnt in their network" so they wont cover me. I had to drop my insurance and apply for funding. How sad is that? But it works. I havent had my appointment yet, but every doctor in the tri state area has basically told me the Cleveland Clinic is the best possible answer and how lucky I am to be so close to this facility.

My WG has obviously not even come close to progressingthe way your roomates has. I STRONGLY URGE YOU TO CONTACT THEM IMMEDIATELY. They may be able to issue you a complete grant, as they have funding to cover people with severe cases, and if they find this serious enough ( i cant imagine why they would not), they may even set you up with a ronald mcdonald house so you can stay with him. It couldnt hurt to try.

I dont have the number on me right now, but all you have to do is google wegeners and cleveland clinic, and it will pop up. There is a doctor there that I will be seeing that literally WROTE A BOOK about the disorder. PLEASE CALL RIGHT AWAY.

I will also do some research tonight to see if there are people in the area who are willing to help with transportation incase they do not have this avaialbe, but I am almost certain I have heard of severe cases of other diseases where they have even flown people in from other countries for treatments, so why not him?

I wish you the best, and i will post again if I can find out anything else.
Take care,
Georgia

Sangye
08-06-2009, 12:02 AM
Your post made me smile, Georgia. It's good to see you reaching out to help others. The info you discover will be so helpful to others who come to this group.

GeorgiaInOhio
08-06-2009, 06:57 PM
Your post made me smile, Georgia. It's good to see you reaching out to help others. The info you discover will be so helpful to others who come to this group.

aw thanks. :D im trying. its good to be able to talk to people who dont look at you like, "oh my god, I feel so bad for you, your so sick" They mean well, but they just dont understand.


SHERI, I found the number you would call the Cleveland Clinic for assistance; 216-444-2200. That is the main clinic line, they can connect you with the specialist, financial aid, and anything else you need. Carol Langford is the name of the specialist for WG. she also works with an entire team of specialists with WG, so Im sure any of them would be beneficial. Im still looking into info about having your roomate flown there without cost, or finding housing around there, but im sure the clinic could get that info to you as well. Please call them!

Also, I just had a thought about his parents- Believe me, Im all for natural cures and I even posted on here about it, but I think if his mom new the severity of what he has, she would realize that stopping everything and drinking guava juice isnt going to cure him. ya, id love for that to be the answer, but its just not going to happen. Maybe she doesnt realize how serious this is- she should be informed, and I also think they shouldnt be in the dark about it either just because your afraid she will try to make him stop his meds. ITs a horrible thing to have a child with an illness you cant fix, and if they are not told everything, well... I dont know, I just feel like thats a horrible situation, even more so then trying to keep him away from their antidotes. They cant force him to do anything he doesnt want to do. Hes a grown up and should just say, this is how it is, and this is what im doing. keep coming up with ideas but if its not for me, its not for me. Nothing is worse then not knowing whats going on with your child. even a grown up one! you never know, it may turn around to be a supportive thing and that is what he needs right now to heal. support and a sense of well being. sorry, thats just a pondering thought in my head- give out the peace and love man. im sure his mom can understand that part. haha :p

good luck to you both! PLEASE CALL THE CLEVELAND CLINIC!!!

Doug
08-07-2009, 01:16 AM
[QUOTE=GeorgiaInOhio;4356]its good to be able to talk to people who dont look at you like, "oh my god, I feel so bad for you, your so sick" They mean well, but they just dont understand./QUOTE]

I don't want people to feel sorry for me. I am not a victim of WG. It can be controlled. I don't even qualify for Social Security disability payments, or Department of Human Resources help on my rent. If I applied for a handicapped parking license plate, my application would be rejected because I don't even meet the minimum requirements. Yet I have a disease that can cripple, maim, and kill me! I need to understand that, as does my family, yet they need to understand, too, that I focus on the now, which, at this time is a "new normal" where I am in remission and have only a few relatively minor WG issues to deal with. By accepting the term "weggie" as a descriptive term for what I am, I shed the onerous term "patient", as in "Wegener's granulomatosis out-patient", which I am not, though I do still see doctors for the disease. I think of those doctor's appointments as my preventive maintenance visits, not some medical thing. Ha!:)