Hello, I'm new here.

[Edmonton Rob]

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]

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]

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]

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]

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 (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) They will usually consult with your local doc free of charge.

Good luck and better health!!

[mrtmeo]

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 (http://onlinelibrary.wiley.com/doi/10.1002/art.20240/full#sec1-3)

[marta]

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]

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

[Edmonton Rob]

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.

[Edmonton Rob]

Thanks to all of you that have replied thus far. I don't feel near as alone as I did yesterday

[marta]

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.

Well it's definitely time to come back and actually see the mountains. It's pretty awesome. I definitely think you might want Dr. Y to quarterback your treatment, working with the nephro' and the pulmy, because they're working on symptoms rather than the whole disease. She knows this disease inside out and works well in teams.... can you tell I love my doc? Ha ha. But all joking aside, people on here will tell you unequivocally, to get a rheumatologist that knows WG as your doc, and she's THE ONE.

Send me a PM and we can connect, and you can come up for a retreat when we have availability and stay with us. I'm actually working with a man in town and we're in the very early stages of making Jasper an autoimmune disease centre. Baby steps. I look forward to meeting you.

P.S. My avatar is above 200ft ;) - taken about a month and a half or so ago. See, you should come out.

[annekat]

Welcome, Rob! I'm glad you found us. Everyone above has said most of the important stuff. I can't even begin to tell you how much this forum has meant to me since even before I was officially diagnosed. It is a big part of my daily life to check in here and see what people are talking about, who is new, etc. You said it, here we feel MUCH less alone with the crappy hand we have been dealt, and we show each other that life goes on, most of us get better, and there is still a lot of living to do after this diagnosis.

Cyclophosphamide worked very well for me, but I was on it for longer than I probably needed to be or should have been, though not as long as you were. I was switched to methotrexate and it has been working well for me for the last three years or so. I probably don't need RTX at this point, but might someday. In your case, with the heart issues and all, I guess I'd see it as more likely that a doc would want you to take it. So I wish you all the luck in the world in getting it approved and covered by your insurance, or by the province, however you can. And I'm so glad you have connected with Marta and are going to give her doctor a call. I hope the two of you and your families will get to meet in person before too long. Keep us posted on your progress. :smile1:

[vdub]

Hi, Rob.... We all totally understand the frustration. As others have said, check with your docs about methotrexate. Its old, dependable, and pretty cheap. I have been on mtx for 5 years now; 5 or 6 months of higher dose treatment and the rest as low dose maintenance.

As for quitting the drugs without taper. Some you can, some you can't, so you always want to check with your doctor. Almost all of us are on prednisone. Pred is one of those you can't stop without a taper. Pred replaces an adrenal hormone called cortisol. When your body sees that you have sufficient cortisol because of the pred, the adrenal gland slowly quits producing as much. If you quit abruptly, your adrenal can't manufacture enough to supply the body with what it requires on a daily basis (about 5mg or pred or 20mg of hydrocortisone). Basically, you could potentially (depending on dosage and length of time on the drug) cause a condition called Addison's disease or have an adrenal crisis. It can be quite serious.

Addison's Disease (http://www.mayoclinic.org/diseases-conditions/addisons-disease/basics/causes/con-20021340) / Prednisone withdrawl (http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923)

[whatthewhat]

Just a quick welcome. I'm glad you found this forum. Hang on - things will get better step by step.

[mishb]

Hi Rob and welcome to the forum.

I'm glad Marta has dropped by to point you in the right direction.

Stick around with the wacky weggies in this forum and you will never be alone (cyber wise) again :hug1:

[gilders]

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.

Thanks for sharing that information.
A few moths ago I was sent for a CT scan of my lungs. My nephrologist, who also takes care of my Wegener's, said that the problems I was suffering with my heart (painful, eptopic heart beats) could be caused by either fluid in the sac around the heart or inflammation around the sac. He said that this would show up on the lung CT scan.
Unfortunately, when the report came back, it was only issues with the lungs that had been reported on. Firstly they said I had Pulmonary Embolisms, then later decided it was more likely damage caused by wegener's.
Now that I know inflammation of the sac caused your heart attacks, I think I need to chase up on the Drs to either re-check the CT scan (if it captured images around my heart) or get them to repeat it.

[LisaMac]

Hey Rob!

It looks like you've gotten a pretty warm welcome from our little band of misfit toys, lol, I'm so glad you've found us.

I'll just take a minute to encourage you to stay the course, stay on your meds. Life is worth fighting for! Your kids need to know that you'll fight for them.

You can probably find my story somewhere around here so I won't go into too much depth except to say that I have also 'considered my options' when it comes to quitting my meds and letting nature take it's course. After my initial diagnosis and a long hospital stay I felt I had nothing to offer my family. I had heart involvement as well except that I did have a heart attack and kidney failure. I left the hospital with 20% heart function, no kidney function, on dialysis every other day, Ctx, bald head, puffy face and body, and NO strength. With help, I could sit up and try to take the fistfulls of drugs, with my 1 liter of water per day. I was so miserable! My husband was unemployed at the time, but we still had nearly a million dollar life insurance policy on each of us. Trust me, I thought it noble of me to give up the fight so my family, which includes 4 kids, ages 6-16 at that time, could have the money and be done taking care of me.

Well, obviously I chose to fight. I had to. When I looked into the faces of my young daughters as they rubbed my feet, or my 16 year old son as he carried me upstairs to bed, I found a resilience I never knew I had so...I...fought! And now, 8 years later, I reap the rewards of my fight. I will never climb a mountain as I always say, but I have a wonderful life. I'm surrounded by my kids and a precious grandson, friends, love, joy, and happiness. It was we'll worth the trip here.

You have kids, and a loving, supportive fiancee to fight for, you must fight. You must. We all talk about our 'new normal' life on this forum. You may never get to be a workaholic again. Good. Find your new pace and learn to love the new you. The weight will eventually come off, you will find the right cocktail of meds, with the help of your drs and your new Weggies family here, and life will be good once again. Just don't lose hope, OK?

Please keep us informed on how you're feeling. I know I had to go on an antidepressant for a while, I would imagine I'm not the only one.

Thanks for your honesty, this is the place to, let it all hang out, as they used to say.

Lisa

[MikeG-2012]

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 (http://onlinelibrary.wiley.com/doi/10.1002/art.20240/full#sec1-3)

But...Failed for me...

[marta]

Thanks for sharing that information.
A few moths ago I was sent for a CT scan of my lungs. My nephrologist, who also takes care of my Wegener's, said that the problems I was suffering with my heart (painful, eptopic heart beats) could be caused by either fluid in the sac around the heart or inflammation around the sac. He said that this would show up on the lung CT scan.
Unfortunately, when the report came back, it was only issues with the lungs that had been reported on. Firstly they said I had Pulmonary Embolisms, then later decided it was more likely damage caused by wegener's.
Now that I know inflammation of the sac caused your heart attacks, I think I need to chase up on the Drs to either re-check the CT scan (if it captured images around my heart) or get them to repeat it.

Wegener's Granulomatosis is one of the things that can cause Myocarditis: Myocarditis Causes - Diseases and Conditions - Mayo Clinic (http://www.mayoclinic.org/diseases-conditions/myocarditis/basics/causes/con-20027303)

According to my doc, we should all be weary of signs of heart issues if we have WG. Just food for thought.

[gilders]

Marta, thank you for the link with info on myocarditis. The symtoms are all what Icurrently have or have had recently. I have finally got an appointment date with Dr Jayne at Addenbroke's. He's probably the best Dr for vasculitis in the UK so I'll talk to him about this.

[marta]

Marta, thank you for the link with info on myocarditis. The symtoms are all what Icurrently have or have had recently. I have finally got an appointment date with Dr Jayne at Addenbroke's. He's probably the best Dr for vasculitis in the UK so I'll talk to him about this.

Sweet!
I know quite a handful of loyal followers.
I believe you will be in good hands.
Best of luck.

[annekat]

Marta, thank you for the link with info on myocarditis. The symtoms are all what Icurrently have or have had recently. I have finally got an appointment date with Dr Jayne at Addenbroke's. He's probably the best Dr for vasculitis in the UK so I'll talk to him about this. Yes, thank you for this link, Marta. It was the only one that even mentioned Wegener's in connection with myocarditis, of the several I looked at. The possibilities of heart problems with us is scary, since they may be present without noticeable symptoms at first.