Hello, I'm new here.

**Edmonton Rob** · 02-21-2015, 07:40 AM

Hi, My name is Rob, I'm a divorced 36yr old father of 3. In October of 2013 I was diagnosed with Wegeners after suffering 2 heart attacks in the span of 3 days. I am currently in remission, or so they tell me. I have been taking cyclophosphamide and prednisone since I was diagnosed. I tried switching to azathioprine just before christmas and ended up in the hospital for a week due to renal failure and stroke like symptoms. It obviously didn't like me...

I am trying to switch to Rituxan but the province is dragging its heels and my insurance company says that since the province should cover it, they won't. I am frustrated to the point of saying screw it to all the meds and letting nature take its course. My fiancee is very supportive and was obviously upset when I mentioned that to her but she just doesn't understand what this disease is like. Prior to getting sick I was very active and I guess you could say, a workaholic. As it stands now, I am lucky if I can do 35hrs a week when I used to do 65-70.... I have put on over 60lbs due to the damned prednisone.

I just don't know what to do.....

**renidrag** · 02-21-2015, 07:59 AM

I don't know where you are but trying to push the Insurance company for coverage should be very important. Getting off all meds isn't the answer, and you are not the only one who has felt that way, but keeping on is most important. Has Doctor mentioned MTX or Methotrexate? I don't think this is as expensive as RTX. Keep in mind I never had either one of them but from reading on here for six years there are folks here who are very happy with MTX. Others will be along soon, with more expertise with these meds and even fights with insurance companies. I too was very active self employed plumber who went from the man that doesn't stop to the man who does nothing, very humbling. I am blessed to have the best wife in the world. As you go forward in this journey I am sure you will have the best wife and children ever. Doh, Edmonton. There are quite a few Canadiens here, they will chime in soon.
Dale

**gilders** · 02-21-2015, 09:14 AM

Welcome Rob.
As far as insurance is concerned I can't help as I'm in UK and use NHS. I have read that the NHS won't usually prescribe RTX unless other treatments (such as cyclophosphamide) have been tried and failed. You seem to fall somewhat in to that category, so would expect an insurance policy to cover RTX in your case.
Don't ever give up the fight. Things will get better, especially when you're on medication that works for you. There's always people kicking about on this forum that are happy to lend a sympathetic ear when you're feeling down or need to vent your frustration somewhere.

If you don't mind, could you explain how they came to diagnose Wegener's after the 2 heart attacks? I.e. is there a definite link between your heart attacks and Wegener's?

The weight will drop off once the pred is reduced.

**Edmonton Rob** · 02-21-2015, 09:47 AM

Initially I was suffering from nasal inflammation/pain. I had gone to see many a doctor in various walk in clinics and had been told by all of them that it was simply an infection (Here's some antibiotics and some T3's, have a nice day). The only thing that seemed to help was standing under the hot water in the shower. The first heart attack actually happened while in the shower trying to get some relief. I was taken to the hospital by ambulance. I was tested and scanned for all sorts of things. This was on a Saturday. On the following Monday, I suffered another attack. I was then sent to the cardiac unit within the hospital. My heart didn't seem to show any signs of damage but all of the signs and symptoms said heart attack. As it turned out, Wegeners not only started in my sinuses but it had also attacked my lungs, kidneys, spleen and heart. What actually caused the heart attacks was Wegeners causing swelling of th sac around my heart putting pressure and stress on my heart leading to the attacks. It was about another 3 weeks in the hospital before I was correctly diagnosed and began treatment before things settled down. Initially I was told I had Non-Hodgkins Lymphoma.....

**Pete** · 02-21-2015, 09:51 AM

Hi Rob,

Welcome aboard. I second Gilders and Dale's thoughts. You've been on cyclophosphamide too long. Methotrexate or mofetil (cellcept) might be better maintenance drugs for you. Rituxin can knock down flares and give some intermediate term (6-12 months) relief. You may also want to talk to your docs about weaning off prednisone. If you get the OK, just remember that slower is better. Just stopping your meds (especially prednisone) is asking for big trouble. When I weaned off prednisone (I'm at 3 mg/day and holding now), I started down at 5 mg/week from 60 down to 20. Then I dropped 1 mg/week down to 15. I then dropped 1 mg/month down to 3. My creatinine got a little squirrely, so my doc and I decided to hold there and see what happens.

When I see my wegs doc in April, coming off methotrexate is on my agenda. If she allows me to try it and I'm successful, I'll starting weaning off prednisone later in the year.

The fact that you're still working productively bodes well for you. If you need a wegs specialist, you can find one here: VF Medical Consultants They will usually consult with your local doc free of charge.

Good luck and better health!!

**mrtmeo** · 02-21-2015, 10:54 AM

Mofetil has worked in clinical trials.
Mycophenolate mofetil for remission maintenance in the treatment of Wegener's granulomatosis - Langford - 2004 - Arthritis Care & Research - Wiley Online Library

**marta** · 02-21-2015, 12:25 PM

Hey Edmonton Rob,

I'm ex Edmonton Marta, current Jasper Marta.

So, first of all, don't stop the meds. May I ask who is your doc? May I also suggest you get a new doc? Her name is Elaine Yacyshyn. She is under the Edmonton Rheumatology website, she is taking new patients, but only Vasculitis. She is my doc and absolutely awesome. She is the one who went to the Alberta Government to make RTX be accepted as a treatment for WG. She is one of, if not the best Vasculitis doc in Western Canada. Worked with Specks at CC and was trained at Mayo. Vasculitis is her thing, and she actually has Vasculitis clinic once a month. She will work to get your RTX covered when she sees what you're going through. I was having chest pains early on, and she sternly told me that you can get myocarditis with WG, and should go into ER if ever it happens again. She's truly awesome, and will do whatever she needs to in your corner. You can call her office, and see if you can get into one of the clinics without a referral, or get a referral from your GP and as soon as it goes through, give her office a call and see if she has a hole she can squeeze you in. Tell her assistant the details, and tell her you're in trouble. That's what happened to me when my old rheumy dropped me like a hot potato when my disease was over his head. Her office phone is 780-407-6762.

Please do it. She saved my life. For real. She knows this disease, and has a ton of experience with it. I sent someone from Jasper to her about two months ago with another type of Vasculitis, she didn't go and let her GP treat her here (no experience in this tricky disease) and she passed last Sunday. Please don't let me read something like that. I can't handle it much more.

If you want to contact me, or have a Jasper getaway, please send me a PM, and we can connect.

Take care of yourself, and don't let the crappy treatment you're getting make you quit trying to fix this mess. It is fixable, but you've gotta be proactive. You've gotta be on it, and once you get Dr. Y in your corner, you're good. She will absolutely do what's in your best interest. I cried my first appointment with her.... she is kind, compassionate, intelligent, and a go getter, not to mention an expert in Vasculitis.

I promise you wont regret that move. Take care and be well, and keep in touch. There are a couple/few of us from this neck of the woods. We can have each other's back.

Check out my blog if you want to see some good outcome stories.

**renidrag** · 02-21-2015, 12:32 PM

So good to hear from you Marta, knew we would. Rob, there are a number of folks here to help.
Dale

**Edmonton Rob** · 02-21-2015, 01:12 PM

I truly appreciate all of the info Marta, I will definitely be giving this Dr Y a call. I am currently seeing Dr Vivek Dhawan who diagnosed me at the Alex and has been treating me ever since. He is a Pulmonologist. I am also being followed by Dr Magdelana Michalska, who is a Nephrologist.

I might just take you up on that Jasper offer... I have been there 3 times now, twice in the winter (My first time to the mountains, it snowed the entire time and we couldn't see more than about 200ft up) and the third was an evening drive through.