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Thread: Wegeners is back!

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    Default Wegeners is back!

    Let me be clear, i have no symptoms, and my blood work is great! Its just that, for the past year i have been off all immunosuppresents. And enjoying it oh so much! First in 17 years of this beast entering my life. You know what happened though? I got really spoiled, and was even able to subconsciencly forget about being a sick person. It was so wonderful! But yesterday it ended. See, i was waiting 9 months to get in to my new rheumy, since she was the dr that cleveland clinic drs recommended here in Pa. So in the meantime i was under cleveland clinics care, at least if problems arose. When i went to them last march for a second opinion, they recommended going on methotrexate right away. I was just sick about it since i had just done rituxan 1 month prior, and my "ex" rheumy was going to let me off all meds until i flared. You know how this issue is very contraversial....and i wanted a break! And i was not facing any issues, so i decided to wait til i got to my new rheumy and see which side of the coin she landed on with the treatment plan. And then it took 9 months to finally get in with her. And so yesterday was HUGE for me...but i didnt go into it with that attitude. I was just excited to finally have a new dr! So this new dr, she did her fellowship at cleveland, trained under the one and only Dr Huffman, and worked there 6 years as an attending. SO i know she knows her stuff. And what do you think happened when she realized i wasnt taking their advice on methotrexate? Ummm...yeah she hit the roof. I didnt even see it coming. I was not even thinking about the fact that she would feel that way (Duh,tho!) she told me 3 times if i dont follow her advice, dont come to her. (In other words she was not very merciful)...i am to start methotrexate today, and come back in 2 weeks. I left her office and cried and cried. I dont really know why, except that i was forced to face the reality of this disease in my life and i had become so used to pretending.I know she is a great dr! Although im hoping a bit more kind at my next visit. And im sorta confused. I asked her the plan in the future, you know, will i ever go off of it? Her response? She doesnt hold a crystal ball, but at this point research is clear, i will be on maitenance drugs the rest of my life! Wait, WHAT???!!!! Research shows???!!!! Research shows every weggie is different, how do you then take a blanket approach to my treatment plan??? And i happen to KNOW several of you who have been drug free, some many years! I dont know...what do you think? I think im still fighting reality, maybe? Thanks guys for listening!!!
    Last edited by im so blessed; 01-28-2018 at 03:28 AM. Reason: I can't spell

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    Default Re: Wegeners is back!

    Hello! So I understand both sides to the story, yours and the docs. See my rheum wanted me to get off cellcept. I had maybe 1 year before I had a full relapse of symptoms again. And ever since then my rheum has been very hesitant to take me off of them again, which i suppose I am okay with because I really don't want to end up in the hospital again. It could be that your rheum doesn't want to take that approach with you just yet. I know every WG patient is different, but that could be the docs way of doing things until she feels you are ready. I would ask her about it again and see what she says.

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    Default Re: Wegeners is back!

    Interesting post. My Rheumy has told me from the get go that I will be on drugs for life. According to him the risk is too great of Wegeners returning and doing even more damage to already damaged organs. Also that a flare is usually less aggressive when still on maintenance treatment.

    Rose

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    Default Re: Wegeners is back!

    I'm convinced that no one has found a cure for this disease, yet. Wegs is merely arrested. I believe that my eyes and possibly brain as well as other organs, have been permanently damaged already and it will get worse if I don't follow medical advice.

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    Default Re: Wegeners is back!

    I've also been told that I will have to stay on maintenance meds for the rest of my life as I had a flare after 30 years which is quite unusual. They are doing research all the time though and I'm hoping that they will come up with something else soon, who knows.

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    Default Re: Wegeners is back!

    I think im just fighting with reality. I have it in my head that maybe another dr would just let me go til id show signs of active disease..and maybe i could just stay off meds for awhile. But thankyou for your responses, Donnak06 going 30 years with no activity would make it very very hard for me to be convinced i have to be on maintenance drugs for life, so if you can do that, i can do this, right? I do know that the drs are looking out for us, and are doing what they know as best at this point. Maybe it will change at some point. Im thankful for the clinical trials that ppl are a part of, otherwise they would always be following protocol and how would they ever know what might actually work. Who knows where GPA treatment will be in 10, 20, or 30 years from now!
    Last edited by im so blessed; 01-28-2018 at 03:25 AM.

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    Default Re: Wegeners is back!

    Most weggies relapse sooner or later when they are off meds. And the relapse might be harder. Like a weggie friend on facebook who was in meds free remission 10 years or so and then relapsed fast and is now on dialysis for life.
    I am not going to go meds free. Actually, I cant because my wg is smoldering most of the time, more or less. But even if I could, I wouldnt.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Wegeners is back!

    I understand the wanting to be a “normal person”-I myself have always wondered what it would be like to not be on medication & basically your life revolving around the disease & drugs. I have been off meds a few times since my diagnosis. The longest time I managed? 4 months. The last time my last rheumatologist said that he would not recommend taking me off meds ever again because you don’t know the damage the disease has done before you show symptoms. But I also have to tell you-only you know your body. I am a little disappointed that your new rheumatologist was not as understanding on what it’s like to have your life revolve around this, where is the compassion?


    Sent from my iPhone using Tapatalk

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    Default Re: Wegeners is back!

    "I am a little disappointed that your new rheumatologist was not as understanding on what it’s like to have your life revolve around this, where is the compassion?"

    Right! Unfortunately, too often compassion doesnt come as easy when you havnt suffered it yourself, albeit i have had drs who have been much more compassionate! Maybe at my next visit once she calms down from being upset at me. I understand her feeling frustrated.

    Sent from my iPhone using Tapatalk[/QUOTE]

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    Default Re: Wegeners is back!

    "Im thankful for the clinical trials that ppl are a part of, otherwise they would always be following protocol"
    It's nice to hear people being appreciative of clinical trial patients. I'm on the RITAZAREM trial.

    As for whether you should be on drug free remission or not is a tough choice. I have had periods of drug free remission and have quite aggressive Wegener's (when active). I'm currently awaiting kidney transplant and really could not say if I'd never gone drug free whether my kidneys would have failed so badly or not.
    I can't regret my drug free choices as the drugs have bad side effects and in my case, they have become less capable of "fighting" flares/relapses. So I'm happy to hold back on maintenance, so that the drugs are more potent during a flare.
    Diagnosed April 1995

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