My Story...

[ErikaCS]

Hi All,
My Name is Erika, from Edmonton Alberta, Canada. It took my GP (Doctor) over 3 weeks to get me in to see a specialist (Rheumotologist). I endured a lot of pain which started May 9, 2011 (all my joints, ears, eyes, teeth, numb feet, then weight loss)
I just got diagnoses June 3, 2011. My Rheumatologist did not go over much with me when I saw her, she told me that I was tested for WG and tested positive, told me a little about it (blood vessels – effects the lung and kidneys), she was in a rush (limited patient room time at the hospital, and going on holidays the next day), gave me prescriptions (pred. 50mg/daily & Sulfamethoxazole/Trimethoprim 800mg/160mg - 3x/wk, and painkillers) and booked me in for my first Chemo treatment (cyclophosphamide) 10 days later, so I had to live with intense pain for another 10 days. She also asked me to asked me to get a kidney biopsy (kidney specialist advised against it). Talk about scary!! No support, no advice, no warning...
I have had a nasal infection since the spring of 2010 (still infected), I was referred to an ENT from my GP after the antibiotics and nasal remedies that he prescribed failed to work. I asked my GP to get me in to an allergy clinic and found out I was allergic to environmental elements, grass, pollen, trees... etc... The ENT did pretty much the same thing, antibiotics, nasal sprays, ointments, nasal rinse... nothing has worked. The last time I met with my ENT, he suggested sending me to a nasal surgeon, I declined.
I had my first treatment on June 13, 2011 and for the last 5 days I’ve been losing my hair. I did have a choice of pills or IV, but the stomach pains from the pills I am already taking was just too much. The treatment has helped some, my feet are still numb and my left ear is causing me problems (dizziness). Also 5 days ago, I started noticing some of the pains coming back, not as severe as at the beginning, but some other discomforts as well, which concerns me. My lungs seem to be a bit irritated; I do have exercise induced asthma and used symbicort, but did not help. I am still at a loss of what to do, eat, avoid.
I have had to stay with my Mom (My Guardian Angel), who has helped and is still helping me. If it wasn’t for her, I do not know where I would be today. She fought to get me into a specialist, because I was in too much pain to fight.
Now I find out that this nasal infection is the start of WG. How did I get this infection? How did it turn into this disease called Wegener’s Granulomatosis? So many questions, no one to hear me till now, I would like to thank you all in advance for being here!!
Erika – Diagnosed June 3, 2011

[Psyborg]

Sorry you've developed the disease, but welcome to our family here. I think some of our Canadian members can give you good information on specialists in Canada. You are going to hear this a bunch, but you really should find someone with lots of experience with Wegeners as it is a very odd disease and many inexperienced docs get in over their head.

[ErikaCS]

Thank you for your advice Bob.
I have been off work since May 10th and the Rheumotologist is telling me I should be back at work within a couple of months. I work in an office with 60+ people, who go to work sick, due to limited sick days. I have to get 5 more Chemo treatments (IV once a month) and that brings my immune system down. Should it not be under control, before I go back to work?
Erika

[Sangye]

Hi Erika, welcome to the group. I'm sorry your doctors have done a poor job of educating you about Wegs and the treatment, etc.... Hopefully we can fill in some of the gaps. There is a wealth of knowledge and experience in this group! Like Bob said, it's very important to get to a Wegs specialist as soon as possible.

Here's some info that will help: http://www.wegeners-granulomatosis.c...need-know.html

Looking at your list of meds, I don't see an acid-blocker. That is absolutely necessary when you're on high dose prednisone. You can destroy your stomach in a few days. I suggest you get an OTC acid-blocker immediately and then call your doctor for a prescription. Please don't wait.

As far as some of the pain returning, that's most likely happening because the cyclophosphamide (aka cytoxan aka ctx) takes awhile to start working. The high dose pred works quickly to get the inflammation down, but it isn't strong enough to completely control the Wegs. But keep an eye on the pain and if it starts to increase a lot let your doctor know.

[Chris G]

Welcome, Erica. And YAY for your mom!!! I don't have experience with cytoxan, but many people here do. Regardless of which control med you use, your immune system will be compromised for some time to come. I'm not sure if that's what you meant when you asked about it being "under control" before you go back to work. Usually, our treatments (on various different drugs) are ongoing for a long period of time. They will likely keep you on cytoxan for a few months, and then step you down to one which is less harmful. Prednisone also compromises the immune system, but not nearly as much as the ctx. Sometimes, the best we can do is wash our hands a hundred times a day, and be careful not to touch our faces (or be coughed on!).

Feel free to ask anything that's on your mind! The group is very diverse, and (unfortunately) has lots of experience with wg.

[pberggren1]

Hi Erika:

Welcome to the Forum.

I am sorry that you have Wegs. All the symptoms you list point towards Wegs for sure. As far as a Wegs specialist goes there is another member on here, Marta from Jasper, that sees. Dr. Elaine Yashysyn. Spelling could be wrong on her last name though. Marta really seems to like her and she has a lot of experience with Wegs. She worked with one of the leading Wegs specialists in the world at the Mayo Clinic in Rochester Minnesota, Dr. Ulrich Specks. Marta recently posted something about her doc saying that she thinks that one should be on a maintenance drug all the time. I believe this is false thinking because I have never heard this before and all the other leading Wegs specialists in the world try to get all their patients med free at some point.

But non the less, you need a Wegs specialist or at least consulting with one. I have my own Wegs specialist right here in Swift Current, SK. I know that may sound weird having a doc like this in such a small city, but it is true. He is from the UK and worked with the top Wegs docs over there. He has seen over 1000 Wegs patients in his career. I am sure that he would be willing to consult on your case as well. Let me know what you think and I will give you his contact information.

I really have to echo what Sangye says about the acid blocker. You have to be on one with even low doses of pred. I am on omeprazole right now. That is the prefered choice amongst most Wegs docs.

Also, I would prefer to be on oral ctx rather that pulse injections every month or six months. Oral works way faster but does have more side effects. With oral ctx you would most likely be on it for about 3 months and then switch to something like Imuran. There is also methotrexate and Cellcept but for most people Imuran seems to work the best. I will be going on Imuran again myself later this month after I finish the Rituxan infusions. This is something else you should be thinking about as well. Getting pre approved for Rituxan. This is something that you will have to talk to your doc about, your main Wegs doc. I think you will be fine using oral ctx for this first go around but if you flare again I think rtx is the next logical choice. It is far less toxic than ctx.

What are all your nose and sinus symptoms right now? I irrigate with a Waterpik everyday. Also there is a NeilMed squeeze bottle that you can get at a local pharmacy with pre mixed packets to rinse or irrigate your nose with. It works very well. I use it myself from time to time.

I will be in Edmonton on August 9 to see Dr. Liu, an ENT, on August 10. He does cochlear implants and I am totally deaf now and am wanting to try them. Hopefully he will let me get them. Anyway, if you would like to meet me just let me know. I know of some other Weggies in Edmonton as well.

Feel free to ask as many questions as you like. This disease demands your full attention and you have to become very informed to stay on top of it all. You have to become your own best doc even if you have an amazing Wegs specialist.

Please let us know how you are doing. Do you have any hearing loss? Have you had your hearing tested?

[ErikaCS]

I appreciate all your advice, I will be on this site as much as I can. I have recently started taking Rabeprazole, is that an acid blocker? I have a hard time drinking water, I have to force myself. Before this, I was never one to drink much water... now it is very important I do. Can I add something to the water that will still help flush out the ctx?

[Sangye]

Erika, yes rabeprazole is an acid-blocker. I've never heard of that one--had to Google it. If you're still having stomach pain it might not be the right one for you. Sometimes you have to try different ones. The only one that works for me is pantoprazole (Protonix).

I don't know if it's true with IV ctx but when you're on the oral you have to drink a lot of water every day to flush the bladder. Your doctor should give you detailed instructions on this, but if she didn't other members will help. Try adding a squirt of lemon to your water or even some mint leaves.

[elephant]

Welcome Erika, and dito to what everyone else said. We are here for you!

[drz]

Erika, yes rabeprazole is an acid-blocker. I've never heard of that one--had to Google it. If you're still having stomach pain it might not be the right one for you. Sometimes you have to try different ones. The only one that works for me is pantoprazole (Protonix).

I don't know if it's true with IV ctx but when you're on the oral you have to drink a lot of water every day to flush the bladder. Your doctor should give you detailed instructions on this, but if she didn't other members will help. Try adding a squirt of lemon to your water or even some mint leaves.

You might also need a larger dosage than what they suggest at beginning. For me Protonix was also the answer but I had to double the dosage to 40 mg twice a day.

Flushing the bladder is very important but most liquids will work for this. Try ice tea, warm tea, or any other drink you can get in large quantity that you like.

Welcome to the forum. Sorry you need to be here but this is best internet source of help and support IMHO