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  1. #11
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    Quote Originally Posted by Debbie C View Post
    Hi lovetoswim..Yea that was bad timing for me but I would have never have know I was sick unless the accident happened.
    Since I only had 1 infusion I didn't know what the "norm" was supposed to feel like afterwards, But I just wanted to sleep for about a week.The problem was the from the facility I had it done at. It was their first time giving a rtx infusion and it was getting close to their quitting time for the day so they pushed the remainder of the iv in too fast. I was fine throughout the treatment besides that.
    Debbie, same goes for me. If my primary doc didn't recommend I see an immune doc, I never would have known I had a high pANCA level. Next week, I see a rheumy and will learn more. If you don't mind my asking, had you had the flu in the past and this last flu set off the serious onset?

  2. #12
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    Welcome to the forum. I am glad that you made it though that horrible onset of this very unpredictable disease. I wish you all the best with your journey. Please take care of yourself!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #13
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    Quote Originally Posted by lovetoswim View Post
    Debbie, same goes for me. If my primary doc didn't recommend I see an immune doc, I never would have known I had a high pANCA level. Next week, I see a rheumy and will learn more. If you don't mind my asking, had you had the flu in the past and this last flu set off the serious onset?
    Lovetoswim, I really don't want to hijack sophiasmom thread but to answer your question. I get a flu shot every year at the Cleveland Clinic with my rheumy. I have not gotten the flu or had any serious onset from it. There is a lot of different opinions on the flu shot that I really don't want to get going on that. If you like you can pm me. Good luck seeing a rheumy,make sure you write down a questions for him/her and try to take any med, records you have with you.
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #14
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    Thanks, Debby.

  5. #15
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    Quote Originally Posted by SophiasMom View Post
    This is my third series of Rituxin. I have 1g, in two infusions two weeks apart every 4 months. I suspect I may have to stay on the Prednisone due to adrenal fatigue also. My cortisol was a little off before all of this took place. Aside from all of the crappy side effects of the Prednisone, I felt really great while I was on the higher doses. I guess we need to find my happy place. Above 10 is not gonna be it.
    Yuck, what a horrible start of the journey, but sadly, too many people with this disease have to go through hell before starting treatment.

    As I was reading down this thread, a few things popped up that I want to share comments on.

    First regarding the hair loss. Fret not. The hair that comes back after losing your hair due to the drugs is amazing. Mine came back at least twice as thick as it was when I was healthy (before diagnosis) and also with a beautiful wave to it (it use to be as straight as straight comes.)

    Second regarding the pred. My first introduction into the world of WG, took me about 5 years to get off the pred. Everyone that uses it more than a week, gets adrenal atrophy. That's because after about 10-14 days of using high doses of pred, your adrenals go "wait what, we don't have to do anything, vacation time". The only way to get back to having your adrenals activate again is to wean off the pred in a way to wake them up slowly enough to not put yourself into 'adrenal crisis' (which can kill you, and it totally sucks) or worse, trigger a flare if you're a Weggie. I got a pretty fantastic flare last year (March) complete with granulomas, actual holes (perfectly round lesions, the biggest being 30mm) in my lungs along with clots as well, so I too am on the thinners since. I just got off the pred from that flare and I was being quite aggressive about it since I didn't want to be on pred for another 5 years.

    So knowing that getting off the pred too quickly can either trigger a flare or set off adrenal crisis, my advice to you is to not go from 10mg to 5mg. The wean below 10mg should be done a little slower, and 1mg at a time. Your body normally makes between 9-11mg / day of corticosteroids, and the worst part of the wean (in my experience) was between 8mg and just below 5mg. That's when the adrenals are forced back into action, and your body has to go through a deficit in corticosteroids for the adrenals to wake up, but it sucks. You're going to have to know that this process is not even remotely fun. But, and this is a big but, it's a lot less painful if you do it 1mg at a time and follow your own body's clues as to the timing than 5mg at a drop. If you want, I can tell you my tecnhique for knowing timing but I wont put it here because already this is too long a post (in typical Marta fashion )

    We all feel great while on the high doses. As sick as I was earlier, when I was on the high doses, you wouldn't believe the home projects I did. I have one wall that I tiled with slate, and in my mind that's the pred wall. I also tiled my bathroom in less than 3 hours, ha ha, pred makes you superhuman. Dropping pred, makes you supermush. Having dropped pred completely and being on the other side, also makes you feel super human because you did it.

    Lastly, a comment on the RTX. I understand that they really want to beat the beast down, but a treatment every 4 months seems kind of aggressive in my limited knowledge base. My personal choice is to keep RTX as the big gun when I really need it to knock down a flare. I know many docs and patients use it as a maintenance drug and use it every 6 months, but my doc and I wont even go there. I only have RTX to knock a flare down, and it has been proven that the efficacy diminishes with each use, and another thing they know is that WG gets harder to treat with each flare. So in my humble, uneducated opinion, it's good to have a big gun handy for those moments when you need a big gun. For me it's all I have left for a big gun since I've taken my life supply (and then some) of CTX, so I treat it like a golden gun not to be touched unless a Zombie attack (a.k.a. Wegener's flare) is imminent.

    There. I'm stopping my rambling. Take it with a grain of salt as it's all based on my experience and might be totally different from your experience, but I think experiences are worth a consideration so you become a long lived patient. I know other experiences on this forum saved my life in the first year of being a Weggie, so hopefully mine can help someone else.

  6. #16
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    Thank you Marta! Based on your profile pic...pretty sure we could be bff's Skiing is my favorite outdoor activity. I haven't put up my skis yet, so to speak...but I may be forced to give it up. But, that thought is for another day, not today! The hair...mine is coming back in great and is also curly right now...looks like a Cocker Spaniel on the top. Mine fell out mostly on the top and back. So, I have enough to pull up and wear a fake hair thing around my piddly pony tail. So, if what's left will hang on, no complaints! Also, you are so right about the prednisone. I felt better in the fall and winter than I had in years. I didn't tile a bathroom, but I had great energy! The month before I got sick, I was on a roof putting on sheet metal. So, I was very active and a wanna be Joanna Gaines (Fixer Upper). 10mg seems to be a good place for me right now. I had developed a strange rash a month or so ago, that I now think is Wegener's related, based on what I have read. Dermatologist thought so too, so prescribed a topical steroid. He thought it came about because of the fairly rapid drop of Prednisone, and using the topical form would calm it down. It did, but the consistent 10mg of Prednisone seems to have stopped it. About the RTX, I am having my last infusion of this series Thursday and I plan on talking to my rheumatologist about it. Originally, she said every four months the first year, then every 6 for 3 years. So, I will be asking. I see my pulmonologist tomorrow. I am going to ask if I had granulomas in my lungs...I never thought about what caused the bleeding. I had these gross sores on my legs and feet..one on my hand. They took forever to heal. They looked like blood blisters. Anyway, thanks to you and everyone that has responded. It helps so much to talk to people that actually know what I've been through.

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