New member to the group

[mich911]

Hi Everyone,

My name is Michelle and I'm 42 years old from NJ. I haven't been officially diagnosed yet with Wegeners but all the bloodwork (Rheumatory Factor, P Anca, Sed rate, C reactive are extremely positive). I also have a saddle nose deformity.

So here is a background...I have been having sinus issues for years. Been on & off antiboitics and just not feeling good. This past fall was especially bad and was on antibiotics three times within four months. Then I started to notice that my nose was caving in the middle and other people were noticing. Especially my children

I finally made an appt with another ENT and he ordered a cat scan to check out my sinuses inside and was concerned about the saddle nose and mentioned we should get some rheumatory bloodwork to rule out Wegeners. He also looked inside and said my nasal tissue displayed like another Wegeners patient he has.

So this March I went back for my follow up and my cat scan of my actual sinuses were fine but the bloodwork was extremely elevated. From there he said the next step was to find a rhuematologist. I did but I had to wait three weeks to get in. During that three week I went down hill. I forgot to mention that when I saw the ENT for a follow up I was about a week into the Flu. First time ever getting the flu in 42 years and I got the flu shot. I think the flu must have started a wild fire in my body. I thought I was getting better and then week later I started with low grade fevers, horrible night sweats, bad leg and joint pain. I was medicating with tylenol, advil but it wasn't working well.

Finally after 15 days of fevers and sweats I did go to the emergency room to get check out because my rheumatology appt wasn't for two more weeks and I figured maybe I have something else going on. So they ruled out pneumonia. and took all the routine CBC bloodwork and all my major organs were fine. Thank god!! They did give me some presciption ibuprofen which helped much better with the leg & joint pains.

I finally made it to the rheumatologist and he ordered a whole autoimmune panel of bloodwork. I think they took a total of 18 viles of blood!! And he put me on 10mg of prednisone. I do feel so much better with the leg & joint pains and my fevers are gone along with the night sweats. My followup for the rhuematologist is on May 10 however I did receive the bloodwork and about 16 items are out of range. Some are only slightly but the ones that indicate inflammation and vasculitis are very elevated.

So Last night I got a nasal biopsy from the ENT and hopefully on May 10 they will have all the pieces and can tell me what I have. I don't think I've ever been this sick in my life. I'm very scared and don't know what to expect especially with having children. I want to remain positive and I know with proper treatment everything will work out.

So sorry this is long. Just wanted to tell my story to people who understand what I'm dealing with.

Best Regards,
Michelle

Edit: Sorry for the edit, Michelle, but I was having a hard time reading your story, so I put in some paragraphs. It makes life easier. :-)

[Pete]

Welcome to the "club", Michelle. Your symptoms seem to be cosistent with wegs.

I'll give you the advice the doc who diagnosed me gave: Take your medications as directed and live your life as fully as you can. Also, don't be afraid to ask questions and make sure you understand the answers. I've done these things and am fortunate to lead a lifestyle that's almost the same as pre-wegs. It's pretty likely that you'll raise your kids and grandkids as well.

Good luck, better health, and let us know how you're doing.

[mich911]

Thank you Pete for the good advice!! Makes me feel more at ease knowing that this disease can be controlled and I can live a fairly normal life

Best Regards,
Michelle

[Middlesista]

Hi Michelle - could not say it any better than Pete!

I found this wonderful site when I was first diagnosed in Nov 2015. It was a scary time for me and the great folks here put it all in perspective and helped me learn about the disease and how to best take care of me. Feel I am fortunate to have so many "experts" around to help me.

Keep in touch and reach out when you need to.

[annekat]

Welcome, Michelle,

I'm sorry you had to wait a few weeks to get things rolling with a diagnosis, but sounds like you are on the right track now. Nasal biopsies are not always reliable, can give false negatives, but I had one and it was positive for WG. I also had a saddle nose already at that time, and that in itself with all your other symptoms is a pretty dead giveaway. It had gone into my lungs by the time I was dx'ed, and if yours has remained confined to the sinus area and joints, that is good, though WG can strike elsewhere later. But getting treated is the important part, to slow down and stop the inflammation and destruction your broken immune system is causing. And finding a good doc whom you trust and has adequate experience, to see you through to remission and dealing with any future flares. Pete is right that you can live a fairly normal life and see your grandchildren grow up. You've found the greatest resource in this forum, for info, support, and friendship. Please do let us know what happens and what your initial treatment ends up being. We are interested!

[mishb]

Hi Mich and welcome to the forum.
I hope that you don't have WG/GPA, but if you do, then this is the place to be.

We don't let it beat us, but sometimes it does get us down. Feel free to come on here and kick and scream and yell, because sometimes you will want to.

The wonderful people above have given the best advice.
Whilst you are on here, ask as many questions as you need to, nothing is too big, too small, or too crazy a question to ask, and also use the search button to seek an answer.

As I said, I hope you don't have WG/GPA, but then if you do at least you will have an answer to why you are feeling so lousy.
Would love to know how you get on and what the results are.

Take care, and ........

[mich911]

Thank you everyone for all the support!! I will keep in touch and let you know what happens on May 10.

I do have one question if anyone can help. I'm kinda of jumping the gun but if I do have Wegeners I read the treatment would be pregnisone and a drug called Cyotoxen. I think I spelled that wrong but the drug is considered a very low dose pill form of Chemotherapy. Has anyone heard of the drug or has taken it and what are the side effects?

Thanks,
Michelle

[mich911]

Hi Anne,

I was worried about how accurate the biopsy was going to be but like you said with all of the other tests being positive and the saddle nose I think it's obvious. I feel terrible about my saddle nose. Some people don't even notice but my profile has changed over the years. It's ironic because I always liked my nose and now it's deformed. And when I get this disease into remission I don't even think I would fix it. Are you considering fixing your saddle nose? In your profile picture you can't even tell you have one. Sorry your Wegeners went to the lungs but you have a great positive outlook and seem to be doing really well.

I'll let everyone know what happens on May 10.

Michelle

[Pete]

I was on cytoxan (cyclophosphamide) for 16 months. Dosage is usually determined by the patient's weight. If you are put on this drug, be sure to stay well-hydrated and urinate when you feel the urge. The metabolates of cytoxan are hard on the bladder. If you have blood in your urine, call your doctor immediately. Side effects include bladder cancer. I now have bi-monthly urinalyses (and other tests) to check for indicators of cancer and wegs activity.

Newer induction therapies may not use cytoxan, but can include methotrexate or rituximab. I hope you are seeing a doctor who has significant experience treating wegs. If not, ask him to consult with a Vasculitis specialist listed on the Vasculitis Foundation's web site. This disease has so many oddities about it that may confuse an inexperienced doctor.

[annekat]

Hi Anne,

I was worried about how accurate the biopsy was going to be but like you said with all of the other tests being positive and the saddle nose I think it's obvious. I feel terrible about my saddle nose. Some people don't even notice but my profile has changed over the years. It's ironic because I always liked my nose and now it's deformed. And when I get this disease into remission I don't even think I would fix it. Are you considering fixing your saddle nose? In your profile picture you can't even tell you have one. Sorry your Wegeners went to the lungs but you have a great positive outlook and seem to be doing really well.

I'll let everyone know what happens on May 10.

Michelle

That's pretty much how I felt, having read enough about WG, having a hospital doc suggest it after seeing my lung CT scan, and then noticing my saddle nose, which seemed to happen all at once, soon after that. So when I went in to my ENT, I was pretty well prepared for the outcome, and the doc was pretty sure, too. He was very apologetic, having overseen my never ending sinus and ear infections for a couple of years, and having not thought of WG. He and his nurse stayed late to do the biopsy on the spot, unplanned for the day.

Well, it was a lucky picture, plus my glasses sort of hide it, plus it really looks much worse from the side than from the front. My latest drivers license pic is terrible, because they made me take my glasses off, and I was very self-conscious. They probably thought I was a cocaine addict. As for getting it fixed, I have no plans, it would probably be more than I could afford, and the Medicare I'm on would probably not cover any of it unless it was seriously interfering with my breathing, which it isn't. And you are supposed to be pretty much in remission before doing it. There is also a filler of a collagen-like material called restylane, which I've heard of some Weggies having good results with, cheaper than surgery but must be repeated every so often. Same thing, they'd probably want you to be in remission. There info on the web about it.

I was initially treated with Cytoxan, one of the stronger meds, probably because I had lung involvement as well as sinus and ear, and because rituximab (RTX, Rituxin) had just barely or was in the process of being approved for WG so it would be covered by insurance, and it is very expensive. If you have only sinus/ear involvement, they might just put you on methotrexate, which I am now on as a maintenance med. Or they could choose azathioprine or Cellcept, some other lesser strength drugs. Most people start on high dose prednisone as well, and taper down to a much lower amount over a period of months, and many of us are on Bactrim DS, an antibiotic taken 3x per week to prevent opportunistic lung infections which we are more susceptible too when immunosuppressed by our other meds. We look forward to hearing about your rheumy appt. and what he decides.