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.

[MaxD]

Michelle,

I too live in NJ (Morristown area) and was diagnosed two years ago with similar symptoms as yours (minus the saddle nose) after 8 months of sinus and other ailments. I was fortunate to see a rheumatologist who diagnosed me right away, and started treatment with Rituxan without delay. If you are anywhere close to Morristown and need a recommendation for a rheumatologist, let me know. My doc is coordinating my care with specialists in NYC (Dr Robert Spiera, and Dr Robert Lebovics ENT).

Good luck to you and hope you are on the path to remission soon.

[mich911]

Hi,

Well I just got a call from my local Rhuematologist and he is now suggesting that it's in my best interest to look for a Rheumatologist at a University Hospital who specializes in WG. My biopsy hasn't come back yet but the local Rhematologist feels it's most likely WG. So my appt on May 10 has been cancelled and I'm searching hospitals in the Philadelphia area. I'm from NJ so Philly isn't too far and they have state of the art facilities and doctors. I'm thinking of looking at the University of PENN.

I would love to know if anyone has any experience going to Philadelphia to treat their WG. Any recommedations would be helpful:)

ANNE, thanks for the information regarding the medicine. As of right now my condition seems to be contained to the sinuses. I did recently have a xray of my lungs to rule out pnemonia so I'm not sure if they could see any WG activity from an xray. I don't have any symptoms in my lungs. Sometimes I do have a dry cough but that could be allergies.

Michelle

[drz]

Hi,

Well I just got a call from my local Rhuematologist and he is now suggesting that it's in my best interest to look for a Rheumatologist at a University Hospital who specializes in WG. My biopsy hasn't come back yet but the local Rhematologist feels it's most likely WG. So my appt on May 10 has been cancelled and I'm searching hospitals in the Philadelphia area. I'm from NJ so Philly isn't too far and they have state of the art facilities and doctors. I'm thinking of looking at the University of PENN.

I would love to know if anyone has any experience going to Philadelphia to treat their WG. Any recommedations would be helpful:)

ANNE, thanks for the information regarding the medicine. As of right now my condition seems to be contained to the sinuses. I did recently have a xray of my lungs to rule out pnemonia so I'm not sure if they could see any WG activity from an xray. I don't have any symptoms in my lungs. Sometimes I do have a dry cough but that could be allergies.

Michelle

How close is this? A world expert near by---Merkel PA
https://www.med.upenn.edu/apps/faculty/index.php/g20001880/p8342206

My treating doctors consulted him.

A NY expert
https://www.hss.edu/playbook/ask-the-expert-dr-robert-spiera-rheumatologist-answers-your-questions-about-vasculitis/?utm_source=rss&utm_medium=rss&utm_campaign=ask-the-expert-dr-robert-spiera-rheumatologist-answers-your-questions-about-vasculitis#.VykwyvmDGko

[Pete]

Dr Merkel is at Penn.

[mich911]

Thank you everyone for the advice. This is the hospital I was going to look into and they accept my insurance. Also, Dr. Merkel is the doctor that I researched. Sounds like a good fit and I will be calling tomorrow to make my appointment. Can't wait to get this started and feel better soon.

Michelle

[annekat]

ANNE, thanks for the information regarding the medicine. As of right now my condition seems to be contained to the sinuses. I did recently have a xray of my lungs to rule out pnemonia so I'm not sure if they could see any WG activity from an xray. I don't have any symptoms in my lungs. Sometimes I do have a dry cough but that could be allergies.

Michelle Hi, Michelle. From reading the above, it sounds like Dr. Merkel at Penn would be a very good bet for you. I wanted to say that you are right, they might not see any WG activity with an xray. With any luck, there is nothing to see there, anyway. But I was having definite lung problems, I thought I had pneumonia, the xray showed little or nothing, and it took a CT scan to see the numerous cavitary lesions that turned out to be WG/GPA. I wouldn't worry about it until such time as things get worse in your lungs than they are now.

[mich911]

Michelle,

I too live in NJ (Morristown area) and was diagnosed two years ago with similar symptoms as yours (minus the saddle nose) after 8 months of sinus and other ailments. I was fortunate to see a rheumatologist who diagnosed me right away, and started treatment with Rituxan without delay. If you are anywhere close to Morristown and need a recommendation for a rheumatologist, let me know. My doc is coordinating my care with specialists in NYC (Dr Robert Spiera, and Dr Robert Lebovics ENT).

Good luck to you and hope you are on the path to remission soon.



Hi MaxD,

Yes Morristown is probably about 30-40 minutes south from me. Isn't Morristown supposed to be the nicest town to live in NJ? Maybe I'm wrong. LOL I think I was sick for a while but these last two months i went really downhill. I had the flu in March and haven't been the same since. My illness just came right out and the bloodwork shows it. I did end up scheduling an appointment with a specialist from the University of Penn. His name is Dr. Antoine Srieh. He is an expert in Vasculitis and rare diseases. The only problem is I now have to wait until June 17. More waiting but he's a really good doctor.
Anyway, thanks for sharing your information.

Michelle

[renidrag]

Back in 2010 I had an appt with Dr. Merkel but he left Boston Medical for Penn before I got to see him. Very happy with his compadre Dr. Monach.

[mich911]

Back in 2010 I had an appt with Dr. Merkel but he left Boston Medical for Penn before I got to see him. Very happy with his compadre Dr. Monach.

Hi,
When I called for the appt the scheduler plugged in all my information and came up with Dr. Antonie Srieh. I know Dr. Merkel is in that group but he may only be doing research and teaching right now. I'm not sure if he is even taking patients. I know he is the world renowed expert in WG but I'm sure Dr. Srieh is also very good. Most of the docs at Penn are amazing!!

Michelle

[Pete]

Dr Srieh gave a webinar for the Vasculitis Foundation awhile back (2014?). He seemed to know his stuff. Webinar should be in VF site somewhere.

[mich911]

Hi everyone,

Maybe someone can give me some insight. Today I have a numbness in my right foot on the side where my ankle is and the numbness is going a little up my leg. Has anyone experienced this with WG? Is it inflammation? I took two advil but maybe I should take something stronger. Any advice would be great.

Thanks,
Michelle

[mich911]

Dr Srieh gave a webinar for the Vasculitis Foundation awhile back (2014?). He seemed to know his stuff. Webinar should be in VF site somewhere.

Thanks so much Pete for the information. I'm going to check it out:)

[drz]

Hi everyone,

Maybe someone can give me some insight. Today I have a numbness in my right foot on the side where my ankle is and the numbness is going a little up my leg. Has anyone experienced this with WG? Is it inflammation? I took two advil but maybe I should take something stronger. Any advice would be great.

Thanks,
Michelle

Wegs can cause or exacerbate neuropathy and this usually starts in the feet but often disappears with effective treatment. Cramps can be serious and painful and may also cause some residual numbness for awhile. Any painful cramps?

[vdub]

I read the treatment would be pregnisone and a drug called Cyotoxen
Pete pretty well answered your question on Cytoxan, but I didn't see anyone respond to pred (unless I missed it). I think the "pregnisone" you are referring to is prednisone. Most all AI diseases are treated with prednisone and some type of immune suppressant like rituximab (rtx), methotrexate (mtx), cytoxan (ctx), and several others.

You will feel wonderful on prednisone, but don't let it fool you. In the long run, it is a nasty drug. You'll be wide awake and get more stuff done than you ever imagined, but at the same time you'll be eating anything you can get your hands on. The net result is that you will gain weight, it is inevitable, so just go with the flow. In the long run, it has some nasty side-effects such as calcium loss. You can read about pred at the url below. Most of us are on pred at various doses and some of us have been on it for years -- I'm going on 6 years, but slowly tapering off and should be off by Sep. Unfortunately, my ESR and CRP were a little high this month, so I might have to go back up for a while. That's kind of the way things go with wegs.
Prednisone (Oral Route) Side Effects - Mayo Clinic (http://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269)

I almost forgot the pred rage -- you will likely get agitated very easily, so you should warn your friends about that, too.

[Alysia]

Pete pretty well answered your question on Cytoxan, but I didn't see anyone respond to pred (unless I missed it). I think the "pregnisone" you are referring to is prednisone. Most all AI diseases are treated with prednisone and some type of immune suppressant like rituximab (rtx), methotrexate (mtx), cytoxan (ctx), and several others.

You will feel wonderful on prednisone, but don't let it fool you. In the long run, it is a nasty drug. You'll be wide awake and get more stuff done than you ever imagined, but at the same time you'll be eating anything you can get your hands on. The net result is that you will gain weight, it is inevitable, so just go with the flow. In the long run, it has some nasty side-effects such as calcium loss. You can read about pred at the url below. Most of us are on pred at various doses and some of us have been on it for years -- I'm going on 6 years, but slowly tapering off and should be off by Sep. Unfortunately, my ESR and CRP were a little high this month, so I might have to go back up for a while. That's kind of the way things go with wegs.
Prednisone (Oral Route) Side Effects - Mayo Clinic (http://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269)

I almost forgot the pred rage -- you will likely get agitated very easily, so you should warn your friends about that, too.

Welcome to our family Mich ♡
Not everyone reacts to pred this way. I didnt gain weight on it. Actually I lost weight. I slept great. Even on high doses. And I can cook special goormet foods while on high doses. No idea how and why. Without eating it.

[drz]

I use the term pregnantzone for pred meds since it gave me the pregnant look.

[mich911]

Wegs can cause or exacerbate neuropathy and this usually starts in the feet but often disappears with effective treatment. Cramps can be serious and painful and may also cause some residual numbness for awhile. Any painful cramps?

Hi DRZ,

It was really painful and there were cramps that came in intervals. It ran up my leg. I finally felt better after taking my two advils & then two tylenol an hour later. However my foot on the ankle side is still feeling numb. I don't know if this is serious and my appt at PENN is not until June 17. Do you know if this will progress worse? All this waiting to get my diagnose is crazy. I have all my bloodwork, waiting for nasal biospy and now waiting for doctor. Any advice for the neuropathy. Am I doing something to cause it or its it just part of WG?

[Pete]

For relief of muscle cramps, I found three things to be helpful. Stay well-hydrated. I eat a banana daily to get more potassium. For awhile, I also took an OTC potassium supplement. Another thing I did was drink tonic water. It has quinine in it which is a natural anti-inflammatory. Don't drink the diet variety as the artificial sweeteners are worse than the HFCS.

These reduced the frequency and severity of the cramps. They should disappear as you get into remission.

[drz]

For cramps I was advised to massage the tight area till it relaxes. I was told not to force a stretch of the cramp area since that might cause tissue damage. That used to be my usual response to force the cramp back to normal position. Being well hydrated, and taking calcium supplements is usually advised too when on pred meds which can also help prevent some type of cramps. I still have cramps frequently but less than I did a few yeas ago.

[annekat]

I do have neuropathy and cramps in my feet that can run up my leg. This mainly happens at night when I'm trying to sleep. Lately, I take 500mg. of magnesium before bed, which seems to help the neuropathy and cramps and promote sleep. Also, calcium and dairy products before bed. Sometimes if I wake up with painful cramps, I find that getting up and walking around helps. Soaking in hot water, esp. with epsom salts, would help, too. And there are foot creams available for neuropathy, I haven't tried them, but they are in drug stores. There have been other threads on this, and I remember one lately, so you might want to try a search on this.