New kid on the site.

[Football lover]

I am new on here. I live in Alaska, so finding a doc and treatment is limited. My rumi wants to start me on Rutaxin IV therapy once a week for a month. Nothing else seems to be slowing down the pain or inflamation in the eyes or making the joint pain go away. I have had shots in my eyes, had a eye biopsy, been on high doses of prednisone (now down to 10), I am on methotrexate, and dilaudad for pain. I see double some days and other days, it is just pain.

Is there any other forms of treatment? Thanks for your input. God bless each and everyone of you. You are in my prayers.

Football Lover
Anita in Alaska:smile1:

[pberggren1]

Sounds like your doc knows what he is doing.

[mishb]

Hi Anita in Alaska and welcome to this fun loving group.

I too am a football lover but not the type you like - I love Aussie Rules (AFL)

You have had injections in your eyes too, like Phil ?
I'm sorry that you have to go through that (both of you)......it kind of creeps me out .......ouch :crying:

How long have you had this, oh so wonderful, condition .......or as we really like to say......."How long have you been a weggie??"

I hope you find the answers to your questions.

Take care

[Alysia]

Hi Anita, welcome.
It is not easy to live in a place where there are not enough docs to trust, being lonely with no other weggies around. I feel the same. It makes doubts if Im having the right treatment, anxiety about that, especially when the symptoms are "stubborn".
when Im coming here, to the forum, Im not alone anymore. and I have the best "WG doc" in the world: the people here with their knowledge and experience. I trust the people here. they help me feel less anxiety. here I learned that RTX is a very good med and I spoke to my WG doc and asked it. I did my first IV 6 weeks ago. Im starting to feel better, eventhough it is a very slowly process.
meanwhile, you may ask your doc about elevating pred. I was on 30mg, and then 20, 15, 10, 9, 8, 7, now 6 and soon 5mg.

[Psyborg]

Welcome to the site. Your doctor sounds to be on the right track. You might inquire if he'd be willing to consult with a vasculitis specialist, but that might depend on your relationship.

[JeanMarie]

Welcome Anita.
Sorry you are one of us, but glad you found this site.
Lots of friendly folks here so ask lots of questions. For info on different drugs go to the Vasculitis Foundation web site. They have lots of info & its a good resource for us.
May you be in remission soon!!!!
Jean Marie

[Marci]

Welcome Anita, Boy, since I posted last there has been so many new people join us. It makes me sad, but so happy they found this site. Also so many of us seem to be having flares. I swear I learn something new from this site everyday from each new post.

Your doctor does seem to know what he's doing so that's good. Here's hoping you will be in remission soon.

[annekat]

Welcome, Anita, from another western state. Sounds like most of your Wegs involvement is in your eyes and joints. That seems unusual, but everyone is different. I can't comment much, except to agree that it sounds like your doc knows what he is doing. You are lucky in that, and in finding this forum. This is a wonderful group of people and a wealth of information and experience. You might search the archives, too, for specific questions on different drugs, etc. The main one you haven't mentioned that a lot of us have used for starters is cyclophosphamide (Cytoxan, CTX), a pretty strong drug, but with your type of involvement your doc probably knows best in choosing RTX. I am currently on MTX but was on CTX to start my treatment because I had serious lung involvement along with the sinus, ear, and joint stuff. Otherwise, they might just have put me on MTX instead. At the time, RTX was only just becoming more widely used and more accepted by insurance plans, etc. In retrospect, I still might not have gone that route and CTX did a good job of clearing up my lungs. Eye involvement sounds scarier in some ways; I had some more minor problems around my eyes which cleared up with treatment. Joint pain cleared up right away, too. The sinus and ear stuff drags on, which is typical. I hope that you start noticing more improvement in your symptoms very soon; I know it can sometimes take awhile. Keep us posted on your progress.

[Football lover]

Thank you for your comments, I am waiting approval from my insurance company for the RTX. The pain has been horrible the past few days. I have no energy and can barely get through my work. I was going to the gym, but cant even seem to get there anymore. Very frustrating since I was doing so well at losing weight and when they raised my predinsone, I gained it all back. I havent heard of the Cytoxan, and my doctor hasnt mentioned it to me. I will do some research on it. Thanks for mentioning it. Yes, I am so grateful to have found this site. What were your side effects with the RTX?

Have a great day.
Anita



Welcome, Anita, from another western state. Sounds like most of your Wegs involvement is in your eyes and joints. That seems unusual, but everyone is different. I can't comment much, except to agree that it sounds like your doc knows what he is doing. You are lucky in that, and in finding this forum. This is a wonderful group of people and a wealth of information and experience. You might search the archives, too, for specific questions on different drugs, etc. The main one you haven't mentioned that a lot of us have used for starters is cyclophosphamide (Cytoxan, CTX), a pretty strong drug, but with your type of involvement your doc probably knows best in choosing RTX. I am currently on MTX but was on CTX to start my treatment because I had serious lung involvement along with the sinus, ear, and joint stuff. Otherwise, they might just have put me on MTX instead. At the time, RTX was only just becoming more widely used and more accepted by insurance plans, etc. In retrospect, I still might not have gone that route and CTX did a good job of clearing up my lungs. Eye involvement sounds scarier in some ways; I had some more minor problems around my eyes which cleared up with treatment. Joint pain cleared up right away, too. The sinus and ear stuff drags on, which is typical. I hope that you start noticing more improvement in your symptoms very soon; I know it can sometimes take awhile. Keep us posted on your progress.

[Football lover]

Bob, I flew to Portland a couple of months ago to see one. He put me on the methotrexate and sent me home. Wasnt too impressed for the money I spent to see him. He wanted me to come back in 3 months, but my doc says that isnt necessary. I also saw a eye specialists at the Casey Eye Institute. Seems sureal sometimes that I am even discussing this. One day at a time, right? Have a great day.

Anita

[Alysia]

Hi Anita,
it is either CTX or RTX but not both. but you can be on MTX + RTX, maybe you even should be.
if Im wrong, please anyone here, correct me.
when I got RTX the only side effect I had was very low blood pressure: 70/35. I know other people had other side effects, but usually not something "big".
good luck !

[Football lover]

Michelle, I woke up with a horrible headache last November and soon started losing the feeling in my face and then my right eye started doing crazy things. I was diagnoised with 5 other things before they finally dx me with WG. I have seen so many doctors, but now they finally all seem to be on the same page. I just want the pain to go away. Even with the narcotics that I have, it is unbearable at times in my eyes and head.

Yes, I am a football lover. I am from the midwest and I use to go see my team play a lot. We only have hockey and hockey here. LOL! Not much of a fan of that. I dont know the rules for the AFL. Maybe one day, you can share them with me.

How are you doing with your treatment? How long have you had it. I was told the average person lives around 5 years with this, is this true? I sure hope not.

Have a great day.
Anita

[Dirty Don]

I was told the average person lives around 5 years with this, is this true? I sure hope not.

That's probably correct without proper treatment...not so with treatment. Phil knows some 80 somethings who have WG...I plan on making it to 80 something! LOL! Don't know who told you, but they better check their facts and stop reading out of a book or on the generalized internet sites about WG...glad you asked!

[annekat]

Thank you for your comments, I am waiting approval from my insurance company for the RTX. The pain has been horrible the past few days. I have no energy and can barely get through my work. I was going to the gym, but cant even seem to get there anymore. Very frustrating since I was doing so well at losing weight and when they raised my predinsone, I gained it all back. I havent heard of the Cytoxan, and my doctor hasnt mentioned it to me. I will do some research on it. Thanks for mentioning it. Yes, I am so grateful to have found this site. What were your side effects with the RTX?

Have a great day.
Anita

Anita, I've never been on RTX, but a lot of people on here have. It used to be that CTX (Cytoxan) was the first choice for people with severe cases of WG, or in cases where lungs or kidneys were affected. Now RTX seems to be the first choice. It is very expensive and not always easy to get approved by insurance. At the time I was diagnosed, I think it was in the process of becoming fully approved by the FDA or something like that, and now seems to be a lot more prevalent in forum members' treatment than it was then. CTX has some serious issues of toxicity over time, but it very effective in treating WG. My doc put me on that and it cleared up my lungs very fast. Later I was switched to MTX, which I'm still on. I guess RTX is considered the ideal, but it seems like a lot more hassle to go through, with the multiple infusions, the time it takes to start working, the side effects, the expense, etc. So I'm just as glad I got CTX, just a daily dose at home in pill form. The main precaution with CTX is that you make sure to drink lots of water to minimize it building up in your bladder and eventually causing bladder cancer. But sounds like you will be on RTX.... probably a good thing in many ways.

[annekat]

Bob, I flew to Portland a couple of months ago to see one. He put me on the methotrexate and sent me home. Wasnt too impressed for the money I spent to see him. He wanted me to come back in 3 months, but my doc says that isnt necessary. I also saw a eye specialists at the Casey Eye Institute. Seems sureal sometimes that I am even discussing this. One day at a time, right? Have a great day.

Anita Anita, I'm questioning whether the doc you saw in Portland is really a WG specialist, since I've never heard of one in that area. Doctors who are considered specialists are listed on the Vasculitis Foundation website. The closest ones to me on that list are in Salt Lake City or San Francisco, both a long journey for me. However, you also mentioned Casey Eye Institute, and one of our members had VERY good things to say about one of the doctors there whom she went to for some WG related eye problems. So that is a good thing.

[annekat]

Anita, the figure of 5 years has been thrown around a lot on websites trying to give info on vasculitis and Wegeners. It could be true for someone in a severe, lasting, undiagnosed or improperly treated flare. But for most of us it is just not that way. Some of us have had what we call "smoldering" Wegs for years before being diagnosed... typically this means sinus and ear problems, asthma like problems, and joint pains, all of which can come and go and be interpreted as other things than WG. Once we are dx'd and treated, many or most of us respond well to the meds and things clear up to where we can function almost as well as before. Some of us need the meds indefinitely, ideally at much lower doses than initially, to stay well. But we are generally not dying off after 5 or 10 or even 20 years, and like Don says, there are Weggies in their 80's. Before modern medicine figured out how to treat WG, yes, people would die of it, and a lot sooner than anyone does now. People now tend to die not of the disease itself but of complications of being immunosuppressed by the drugs, and there are precautions that should be taken, but even that is pretty rare.. That is my take on things I've read here, anyway.