Do I have Wegs or don't I?

[chrishans]

It all started in April, 2008. Swollen hand for a few days then nothing for a month. Started as a normal cold for me, scratchy throat...Normally would not go to a Doc but did since my Daughter was to be married in a week and a half. I was prescribed an antibiotic and other OTC items but you guessed it, nothing worked. Over the next seven months I was prescribed about six more antibiotics amongst other meds including prednisone (10 or 15 day packs), but still nothing worked. In January '09 my ENT did a test to rule out Wegs but instead ruled it in. Then went to a local pulmonologist and rheumatologist but was not satisfied. Went to Philadelphia, then New York and now am seen at the Cleveland Clinic. In May of this year I started with 60mg of prednisone to start and felt good pretty much right away. Weaned off it by July 31st and the symptoms came back, although changed. My nature is to downplay the symptoms and not complain too much. I go to work each day. Night time is more difficult. My symptoms right now and since August 1st are a congested head, runny nose with no blood, phlegmy cough with no blood, pains in knees, elbows, forearms, toes, gums, sores in mouth, tightness in chest on several occasions, dry mouth while sleeping. I have had two negative biopsies. Although I have had positive pAnca and cAnca the Drs. have not positively diagnosed my illness as Wegener's although they may as well have. I was on Bactrim DS from January thru September 20th. I stopped and went to a nutritionist and have been taking ten different supplements, for six weeks, but these have not helped. My biggest problem is the Drs. have not been able to confirm the diagnosis so all we have to go on are my symptoms. Am I doing more internal damage by not starting the Prednisone and Methotrexate?

[elephant]

Hi Chrishans, It sounds like wegeners disease. Who did you see at the Cleveland clinic? I had the runny nose ( no blood), short of breath ( on and off), swollen joints ( to the point where I could not walk), temps that would spike up to 101 and be gone in a day. I also had trouble swallowing, I can go on. I was finally diagnosed in 2008. I had this disease for 30 years and the docs could not figure it out. Kidney Transplant in 1989.... Anyways wegeners will do damage if not caught in time. I hope you don't have Wegeners! Be persistant!!

[chrishans]

I am seeing Carol Langford. I have had three visits and I have the feeling that if I want to begin taking the drugs, ie pred and methotrexate, she would go for it but I just don't know what to do. I guess I would feel better if I had 100% assurance that I have wegs but I do not want to do any damage by not doing anything. I am going to meet with a local rheumatologist and have him speak with Langford at Cleveland. It took 30 years for your diagnosis?

[Sangye]

You may be one of the many people who never has 100% confirmation. Your symptoms and the course of disease sure sound like Wegs. I'm sure Dr Langford explained that often when someone has the signs/symptoms of it, they treat it as if it were confirmed. Most of the related autoimmune diseases are all treated the same, anyway. The risk of not treating it and having it progress is very high.

Methotrexate is not a breeze, but it isn't anything like cytoxan (the heavy-duty chemo they usually use). If treatment is delayed, you might wind up on cytoxan. It'd be very good to avoid that.

I suggest you ask Dr Langford what she'd do if she were in your shoes. You can trust her judgment. I hope you'll continue to see her--she's an excellent Wegs specialist and you'd be safe in her care.

And BTW, welcome to the group!

[andrew]

Welcome! I've heard many good things about Dr. Langford. I'd do as Sangye suggests and ask her what she'd do. I too would recommend starting a course of treatment ASAP. Letting the WG (assuming it's that. sounds like it is) get mre of a foothold is going to do you more harm than good.

[elephant]

Hi Chrishans, Well my story is long. It took forever for Carol Langfords resident to type up my history. Mine started back in 1980 ( red eye, swollen joints and sinus infecs/ear). At age 15 ( I'm 44 now) I was complaining of severe joint pain and back pain ( going into kidney failure). Started to lose alot of weight ( skin and bones) was admitted to childrens memorial hospital in chicago. I was there for two months. They did every test on me ( alot of poking). They decided it was some type of autoimmune disease. So I was on cytoxan and prednisone for about 3 months. I stoped the cytoxan because I was vain and didn't want to lose my hair. I was back in remission. I stayed on prednisone and blood pressure med for several years. My creatine was a 2 at the time ( kidney function). It progressively got worse at age 24 and ended with a kidney transplant (brother gave it to me). Once you get a kidney transplant they put you on prednisone and immunosuppressant ( cyclosporine). So that quieted the disease for a long time. Then the docs took my off prednisone and lowered the cyclosporine. Thats when I had symptoms ( mild joint pain, chest pain, runny nose, ear feeling full, abdominal pain, headaches, spikes in BP, eye pain) . Then in Sept of 2007 it got really bad. I was in complete denial. I kept blaming my swollen joints from playing and carring by kids. I am pretty petite, so everyone thought the same. Anyways after three Maxillary sinus surgeries and could not hear. I worked as a RN doing Case Management at a local Hospital, and realized I can't hardly hear and walk. I knew I had to do something since my ENT even after the biopsy report stated possible Wegeners, but it also had other diseases/cancers down. I went to a good doc and he figured it out in one minute! Carol Langford is great and she will answer any questions you may have. I know it is scarey to be on meds, but if I didn't I would be dead like the rest of us WG. Not trying to scare you, but if you read about it you will see that prednisone usually alone will not put Wegeners in Remission. Hope all turns out good.

[onatreetop]

welcome and boy your symtoms sound a lot like mine. My hands were what made me seek more help. I had been seeing A neorligist for 6 years for carpultunnel and guess what...........it wasn't. He finally sent me to a RA doc and that is who found the WG and fast. He took one look at me and said I believe there is an underlaying problem here and we are going to find it. 24 tubes of blood later and pee in a cup lead to mra of lungs, catscan of head, reinal function nuc testing and ultra sound of kidneys and two more test I cant remember. The only thing he found were 7 3mm nodgules in my right lung. Then he said thats is it. You have WG and it is just starting. I began the meds within two weeks of meeting the RA and have been taking them since. Which isn't to long but I am in my 5th month.
I could have argued the RA but the symtoms were there and I did get relief from the pred. cyt and bac. My hands are nowhere near what they were. That was the other test catscan with nuc of hands. The palmer arch was blocked and another one. I had that test again and they have begun to open up more! So it is working for me.
i have always had a history of headaches,sinus and allergy probs but the hands I needed back and bad.

[chrishans]

Thank you all for your thoughts. It certainly seems as though my symptoms are minor after hearing about everyone elses. I am calling Dr. Langford today to schedule an appt. I have a local rheumatologist who I will ask to speak with Dr. Langford. I understand we must trust our Dr. but I guess since my symptoms have not been constantly debilitating, I have been searching for a 'Natural' way out of this dilemma. Good health to all.

[Jack]

Thank you all for your thoughts. It certainly seems as though my symptoms are minor after hearing about everyone elses. I am calling Dr. Langford today to schedule an appt. I have a local rheumatologist who I will ask to speak with Dr. Langford. I understand we must trust our Dr. but I guess since my symptoms have not been constantly debilitating, I have been searching for a 'Natural' way out of this dilemma. Good health to all.

If it is Wegener's, the best time to treat it is when the symptoms are minor. I went from minor symptoms to dying in a matter of a couple of weeks.

You should not necessarily trust your doctor. Most know nothing about Wegener's and misdiagnosis is pretty much the norm.

There is no Natural way to tackle Wegener's.

[chrishans]

Jack,
When you say misdiagnose, are you referring to Doctors diagnosing the symptoms as something other than Wegener's rather than diagnosing it as Wegener's and being wrong?