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Empty bucket
03-31-2010, 03:48 PM
Hello everyone. My first post. I've been lurking for a month or so and decided to jump in. My name is Dusty. I live on the Mississippi River in Sunshine LA. This is just south of Baton Rouge. I am a 56 year old male. I was diagnoised in May 2008. Prior to my diagnoisis, I was wide open in everything I did. That is why my bucket is empty if you know what I mean.
Here we go. I started feeling bad and simply out of sorts in the summer of 2007. My sinuses were giving me trouble. I did not have allergies or sinus problems prior to this. I went to my GP several times until January 2008. During this period I was given meds for sinus infections. The problems not only persisted they actually worsened. My GP referred me to an ENT in Baton Rouge. The ENT ordered a CT of my sinuses, but scheduled surgery on my first appt. He said if by chance there was major improvement, he would cancel the surgery. The results were bad so I was prescribed heavy does of antibiotics; he wanted the sinuses as clean as possible before surgery. Things continued to go downhill. I had surgery on April 1, 2008. He said if ever anyone needed sinus surgery I sure did. After surgery he informed my wife that the surgery went well but something was growing so he had taken several cultures. I was back home that afternoon. I felt OK for a few days then things started going downhill again. When I went for my post-op visit, I could barely walk into the building, pain in my knees and my head felt like it was going to explode. This continues for six weeks, my ENT continues to say that we just did not realize how bad my sinuses were and it would take a while to heal. My wife knew that this was not normal and made an appointment with my GP for a physical. She insisted on going with me, she felt that this doctor knew me and would listen. She also told him that one of my sisters had lupus. He orders extensive bloodwork. The results showed markers of RA. I was then referred to Rheumy, which would be a couple of months.
Meanwhile back to ENT, by now my wife knows this is not just a SINUS INFECTION, we ask about the results of the culture that is pending, all others were negative. ENT said the pending culture was negative. By now, I cannot hear and I have an eye infection. I tell my ENT that I never understood how anyone could be in so much pain that they would take their own life, but I could now see how it might happen. He said he had a friend who was a psychiartrist and wanted to know if I wanted to see him. My wife had to control me, but that was coupe de grais. He sends me to an infusion center for a pic line. After insertion I had to go for an x-ray to be sure it was in the right place. It was. A few days later, I am back at the ENT. He wants to know if I am aware of the nodules on my lungs. Well no I wasn't so he ordered another CT. He was out of town for a week. His nurse called and wanted me to start prednisone,another ENT in the practice had ordered the prednisone after reviewing the CT report. My wife did not fill the script because regular ENT said to stop the prednisone.
Alarms are going off everywhere. Our niece who is a nurse is coming by and she is very concerned - she goes home and tells her mother that I will die if something is not done soon. She and her daughter, who is also a nurse come again. They want me to go to the emergency room, but I am too sick. My wife is doing a lot to research and has decided I should go to the Mayo Clinic . Our niece comes again and convinces me that I have to do something because I am definitely not getting better. She said they are going to make the arrangements. I am so sick, I said let me see ENT one more time and anyway I needed to get the pic line out. She informed me that I would need the pic line whereever I went. (Her father had just died and she was not going to let me die.)
Emotions are fragile by now, I can not hear, my eye is bulging and my head is in constant pain. Someone calls a friend of mine who is a doctor in Kansas. He calls my wife and after much discussion, he tells her to get ENT doc to send him a copy of my records. He reads the reports and discovered a note from the pathologist that reads "Wegeners needs to be considered" but my ENT didn't read that or missed it.
My ENT's nurse calls early the morning of my appt and wants to know if I have been taking the prednisone. My wife told her she had not filled the script because my regular ENT had told me to stop taking it. The nurse wants me to go for another CT and my wife blew up. She said I was in so much pain I could barely walk and we were coming to pick up my records and go somewhere to get a diagnosis. The nurse said to come in now, we would not have to wait. I see ENT and he agreed I needed to be hospitalized. I was admitted that afternoon and three days later I was diagnoised with WG. I spend 7 days in hospital, have another sinus surgery and tubes in my ears while in the hospital. I am prescribed IV preds and ctx. In addition to ENT, I am assigned a rheumy and a plumony. The journey begins.
Summary of treatment to date:
sent home on 50 mg preds and 50 mg ctx. Improvement begins in about two months. Begin tapering the preds to 0 in 4 months. Increased ctx to 200 mg. Bactrim 3X per week. Sinus problems continue but am basically feeling OK. Got pneumonia mid Dec. Treated and recovered.Back on ctx in Jan. 09. Feeling OK, no pain just sinus problems. Switch to Imuran Feb. 09. Allerigic reaction. Back on ctx 250 mg and 20 mg pred. March 09.Tapered off preds in 1 month. Been on ctx 100-250 to date.
According to my rhuemy my anca levels were off the chart when I was in the hospital. In four months time under his care it was negative. The positive anca levels returned after I was not able to take Imuran. They remained low and I felt OK. My "Limited Wegener's" has been managed with very little preds. Ctx seems to work, but it is getting the best of me now. I have taken it for almost 2 years. I should own stock in bottled water industry.
Here comes the big question. For the past month, I have been prepped for my first infusion of rtx. It is scheduled for 4/5/10. Do the benefits of rtx outweigh the risks? Should I be worried about PML, my rheumy isn't.
Thanks for listening.
One more thing, if it wasn't for my wife I would not be here.

Cindy M
03-31-2010, 04:34 PM
Hi Empty Bucket, welcome to our group. I know this is not the place you want to be but there are some very informative people here. I rely on there advice and opinions. When I hear stories like yours I realize how lucky I was to be diagnosed so quickly. I would love to give you some advice but I am still struggling with trying to find the right meds. I know you will be getting some very good answers to your questions so I will leave that in the other's experienced hands. You have come to the right place. All the best.

pberggren1
03-31-2010, 04:55 PM
Hi Dusty:

I'm glad you found us. It sure sounds like you went through the mill.

You mention "Limited Wegener's". I personally don't believe it exists as well as most other folks on here. Your case sounds quite similar to mine and my case sure wasn't limited.

What is PML?

If you have a good WG specialist, not just someone who treats a handful of patients, and the specialist is confident about using rtx I would definitely try it. It is much less toxic than ctx.

Jack
03-31-2010, 05:10 PM
Your case sounds very much like my own before diagnosis, but it took renal failure on top of everything else before they realised that I had more than sinus trouble!

In my own case, the IV ctx and pred had an immediate effect and I felt better in spite of the permanent damage caused. I would have expected you to have few symptoms by now if the treatment was right for you, but in any case you should not still be taking ctx. The potential for long term consequences mean that you need to minimise its use.

I'm not too clear about who is in charge of your treatment now, but you must make sure that they have plenty of experience with the treatment of Wegener's. They need to be a specialist, a general rheumy will just not do.

elephant
03-31-2010, 11:30 PM
Welcome ! Sangye will be coming by to nag too. I suggest like everyone else on this forum that you have Rheumatologist that specializes in Wegeners. I travel very far to see Dr Langford at the Cleveland Clinic in Ohio. It is worth it! They are on top of your case and all the research that is going on with Wegeners patients. Wishing you wellness soon.

JanW
03-31-2010, 11:52 PM
Hi, Empty Bucket, and welcome. Sorry you had to end up here, but glad you made it.

Rtx is definitely much less toxic than ctx, and Jack is right, you really want to minimize the use of it over your lifetime. As I am sure that you know, it is a highly toxic drug that has been shown to increase the risk of bladder cancer. Some of us have to use it, but what I've read seems to indicate that the specialists like to do it for no more than 3-6 months before switching to something with lower toxicity. Rtx has been shown in studies to be very effective in the treatment of WG.

I am confused -- are you being treated at Mayo now?

You will find that people on this board don't like the term 'limited Wegeners' it happens to be what my own doctor told me I had an when I came on here and announced it, I got a little bit of an earful. I continue to remind people that it really is a 'term of art' that doctors use to refer to WG that doesn't have renal involvemnt -- it says nothing about whether you will get renal involvement, it doesn't mean that you aren't as sick or that you have a better prognosis than someone who doesn't have the limited version. Both Sangye and I have limited WG in that we have no renal involvement at this time -- the state of our health is very different, however.

Sangye
04-01-2010, 12:06 AM
Hi Dusty,
I'm here to nag! Okay, first I'll welcome you and say that I'm glad you survived all that and found this group.

I'm with Jack on the ctx-- you've been on it way too long. It's too dangerous and also if it were the best drug for you it would have worked in the first 7 months before you got pneumonia. Your doc is using ctx when he probably could have used mtx or Cellcept.

I definitely agree that you need a Wegs specialist involved. The main centers in the US are Mayo ( in Rochester, Minn or Florida), Cleveland Clinic, Johns Hopkins (Baltimore) and Boston Univ. It's very much worth traveling to a center to see a Wegs doc in person. I wouldn't want to be without my JHU team, that's for sure.

I'm glad you're starting rtx meanwhile. PML is a concern for anyone on immunosuppressants--particularly rtx and Cellcept. It's a remote risk. There's nothing you can do about it to avoid it. My doc isn't overly concerned, either--just told me the symptoms to look for.

Empty bucket
04-01-2010, 01:44 PM
Thanks to all for the warm welcome. I knew I would get nagged for not having a specialist and rightfully so. I have been treated by the same rheumy in Baton Rouge for the past 22 months. He is 15 minutes from my house along with my other docs. We just got comfortable with him. He always said my blood work looked good. He was always happy that I used very little preds after the 4th month. Plus I felt OK most of the time. I do realize now that I was on ctx to long. I'm going to have my first rtx infusion on Monday. We plan to have a long talk with my doc during or after. Thanks again for the welcome and all the great info.

jola57
04-01-2010, 04:09 PM
Hi and welcome. Your story sounds so familiar. Misdiagnosis and more misdiagnosis until you are so far gone that the only option is hospitalization. Your rheumy seems to know what to do but getting some consultation from Mayo would be a good idea. I was on cytox for a year and half and am now on methotrexate. Personally I don't think that it is too long if needed but I think that maybe you have been tapering off the pred too fast and thus relapsing quickly.

coffeelover
04-02-2010, 04:14 AM
aGAIN, i AGREE WITH jOLA as that happened to me. I tapered off the pred too fast and symtoms came back immediately. I see an ENT/WEgs Secialist at the Mayo in Rochester, MN. I also see my ENT/surgeon here at home, my GP, my Rheumy with WEG experience and who ever else can offer some insight. As they say "It takes a village" Welcome to this village, there are many experts here that will continue to guide (not nag) you.
Lisa Coffeelover

Carol
04-02-2010, 03:40 PM
So often we hear about nose specialists not diagnosing something more is going on than just bad sinuses. My nose guy wanted me to have surgery, surely in their training they are taught about Wegeners. My treament would have started alot earlier if he had alerted the Doc's that something more serious must be happening.

Sangye
04-03-2010, 12:11 AM
In their defense, most MDs (even ENTs) are very unlikely to ever see a case of Wegs in their practices. (Only about 500 new cases are diagnosed each year in the US.) Most of us don't present with straightforward symptoms that began suddenly and therefore would be easier to identify as a syndrome. We usually come in with a collection of wide-ranging symptoms that developed over time, each of which could be due to a long list of diseases or conditions. A common phrase physicians are taught in diagnosis courses is "If you hear hoofbeats, don't think zebras." In my own schooling, we were taught this as well. We learned about Wegs on a "short list" of diseases we would never ever see. When my doc dx'ed me, I had no memory of Wegs.

I think the only people who have a good chance at being dx'ed quickly are those who present with lung hemorrhage, or kidney failure, or saddle nose, or subglottal stenosis, or obvious lungs, kidney AND sinus involvement all together. Only a small handful of diseases can cause each of these.

Of course, those docs who ignored a radiology or pathology report that mentioned Wegs have no excuse. That's just sloppy medicine.

JanW
04-03-2010, 12:22 AM
I agree with Sangye. What got my rheumy to sit up and take notice -- really take notice of the recommendations on the radiologist report that my pulmo had essentially ignored -- was as plain as the nose on my face. This led him to immediately go from "Wegener's -- wow you are really talking about an exotic disease" to "you probably have WG or sarcadoisis, let's run tests immediately." I wasn't presenting with any symptoms other than my aching ankle and abnormally high RF, ESR and C-rp. Considering that most ENT aren't going to order that kind of blood work for their patients, I'd be surprised that they'd ever catch WG at all. My pulmo had never seen a case and she's been practicing for 20 years.

And for what it's worth, even SS doesn't necessarily get put down to WG...the first thought my old ENT had was trauma from intubation (which I've never had), which accounts for this kind of scarring in the majority of patients that are middle aged. And the first thought my new ENT (my surgeon) had was sarc, which is much more common, especially in blacks. In some ways it makes sense that the radiologist and pathologists flag this, because they are just running your tests against a set of conditions for a particular disease without the 'noise' of having clinically examined the patient. Therefore, their own biases aren't going to get in the way.

patricia
04-03-2010, 06:35 AM
Hello ad wecome. I am new to the group also. I have had wg for 10yrs now. Im on 10mg of predisone it is working well fo me so far. I have been doing rituxin infusions for the last 4 yrs. I just finished my second round on March 30. I get it done only once a year. It works for me. their are some side affectes. I am having fatiage really bad right now but I am feeling better each day. Hang in there. I'll pray for you. Take care

elephant
04-03-2010, 07:17 AM
Wecome patricia! Have you been on prednisone for 10 years straight? What other medicines did you have to trial and error before you started the rituxin? Glad it is working for you.

Empty bucket
04-03-2010, 01:31 PM
Hello ad wecome. I am new to the group also. I have had wg for 10yrs now. Im on 10mg of predisone it is working well fo me so far. I have been doing rituxin infusions for the last 4 yrs. I just finished my second round on March 30. I get it done only once a year. It works for me. their are some side affectes. I am having fatiage really bad right now but I am feeling better each day. Hang in there. I'll pray for you. Take care

Thanks Patricia. If you get rtx once a year how many infusions do you get and how far apart? How much each infusion ? Can you tell me about your side effects ? Anybody else who is being treated with rtx please chime in. I start rtx on Monday

Dumpy
04-03-2010, 02:16 PM
I'm sorry that you had to meet all of these very kind and grateful people on this site because that means you have meet our other BFF but you will find a wealth of knowledge here and a lot of good people.
I live just North West of Baton Rouge in Central. I was diagnosed with WG in Jan 08. I see a Pulmonoligist in BR at Baton Rouge Clinic and when I was searching and trying to find out what was wrong with me I also was seeing a Reumy at the same clinic. It was that the 2 Docs decided that the Pulmy would be my quarterback. The ENT that I see does surgery at OLOL but his office is in Mandeville but he is a really great doc.
The closest WG Specalist to use is in Birmingham, Ala. at UAB. I went in Oct. 09 and was one the best things that the nags on this site could have done for me. It was really worth the effort and piece of mind to know for sure that the treatment I was getting was the right treatment.
If you need any help with Doctors names and phone numbers let me know. Maybe one day we could meet.

Sangye
04-04-2010, 12:41 AM
. I went in Oct. 09 and was one the best things that the nags on this site could have done for me.
Chuckle chuckle. :D :D

elephant
04-04-2010, 12:46 AM
Thanks Dumpy, so glad us naggers are doing our job. I have to agree with you Dumpy, I felt the same way. I am excited to see my Wegeners specialist in June. Call me crazy!

Sangye
04-04-2010, 12:49 AM
Empty Bucket, I just finished my 2nd round of rtx (4 weekly infusions). The first one was in October. I started the thread "Rituximab Round Two." There's some good info on it, if you can wade through our excess silliness and side-track conversation. I do still add info about how the treatments have gone on that thread. Also, Jan started another thread called "Rituximab" recently. There are only a few of us who have tried rtx. So far so good.

Each time I see my Wegs doc at JHU he's more optimistic about rtx as he sees widespread successes.

Sangye
04-04-2010, 12:52 AM
I have to agree with you Dumpy, I felt the same way. I am excited to see my Wegeners specialist in June. Call me crazy!
Well then I'm crazy too. I love to see my Wegs doc. He puts my mind at ease and is able to take an objective look. I see him every 3 months. I start losing hope somewhere in that gap and then I see him and feel hopeful again. Plus, I learn so much about Wegs-- the disease, the drugs, the research, and the broader world of what's happening with his hundreds of patients. Good stuff.

pberggren1
04-04-2010, 02:28 AM
Dr. Seo is a Rheumatologist, right?

Sangye
04-04-2010, 02:31 AM
Yes-- he's a Wegs rheumy at JHU.

Empty bucket
04-04-2010, 10:51 AM
Dumpy, it's nice to hear from someone in my neck of the woods. My pulmy is also at the BR Clinic. My ENT is on Bluebonnet. My Rheumy is at Ochsner on Bluebonnet. I am scheduled for my first infusion at Ochsner on Monday morning. Indeed it would be great to meet one day. Stay in touch and good luck.

Dumpy
04-04-2010, 11:55 AM
Good luck with your infusion on Monday. Who is your Pulmy ? I see Dr. Hines

Empty bucket
04-05-2010, 09:53 AM
My plumy is Dr. Crosby. I saw Dr. Hines when I was in the hospital at OLOL. He helped diagnose me. He was great !!