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Thread: What is remission?

  1. #11
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    Hi Bloom,

    With regards to my RTX treatment, I had worked my way thru Cyclo, Plasmapheris Exchange, Azathiaprine, Mycrophenolate Mofetil, Campath (Alemtuzamub) before I finally went onto RTX. The doctors at Addenbrookes said that they were keeping it back in case all else failed!
    I am very lucky to be seen by Dr David Jayne at the Vasculitis Clinic at Addenbrookes, he is a very well respected authority on Vasculitis.
    I live in North Essex near Colchester and its about an hours drive to Cambridge for my visits, never a chore, always a blessing!

    Reading between the lines, are you confident about the treatment you are receiving? I know Gilders managed to get a referral to Addenbrookes and he lives in the N.E of England. I understand your dislike of steroids. I have been on them constantly for the 7 years since DX but am tapering slowly and successfully at this moment.

    Keep in touch and let me know how you get on. Down here we attend several WG get togethers which prove to be very supportive and good fun. Have you checked out John and Susan Mills from the Vasculitis UK site?

  2. #12
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    Hi Geoff, thanks again for your helpful advice. I am glad that the treatment has worked for you at last.
    Like a lot of people it took me a long time to get a diagnosis, and even now I'm still unsure. I sometimes wonder how much is due to illness or just getting older!
    The WG get together sounds like a great idea.

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    People and doctors have different opinions of what remission is.

    My personal view is very similar to Drz's - symptoms under control and no meds or no new meds planned on being used.

    But even if you achieve med-free remission, you're likely to have some long term, permanent effects. Some of this can be directly linked to a damaged organ, but there also seems to be things like fatigue that can't be pinpointed to anything other than "after effects" of Wegener's even when you've been in remission for a long time.
    Diagnosed April 1995

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    Thanks Gilders, I wondered if some things might also be considered acceptable in remission, like earache etc. Whereas some things not, new growths in lungs and coughing up fresh blood. The treatment centre I attend views lung symptoms as their priority I think, but then that is their specialism.

  5. #15
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    Quote Originally Posted by gilders View Post
    People and doctors have different opinions of what remission is.

    My personal view is very similar to Drz's - symptoms under control and no meds or no new meds planned on being used.

    But even if you achieve med-free remission, you're likely to have some long term, permanent effects. Some of this can be directly linked to a damaged organ, but there also seems to be things like fatigue that can't be pinpointed to anything other than "after effects" of Wegener's even when you've been in remission for a long time.
    Fatigue is major issue for Weggies and was main article in the last Vasculitis Foundation Newsletter. I attribute my feelings of fatigue and lack of endurance to my damage from the Wegs to kidneys, lungs, neuropathy, etc and weakness caused by meds and maybe some to the stress of trying to manage two chronic illnesses (diabetes and Wegs). But it seems there is also some additional unclear, unknown or undiscovered reasons for why fatigue is such a big issue to many, perhaps most, people with Wegs or similar autoimmune disorders.

    Yet there are the extreme examples of some Weggies doing impossible physical tasks that most healthy people cannot do, like climbing Everest, running the Idatirod, biking cross country etc. that are harder to explain given our tendency to often feel fatigued.
    Last edited by drz; 08-11-2015 at 06:58 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

  6. #16
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    Quote Originally Posted by drz View Post
    But it seems there is also some additional unclear, unknown or undiscovered reasons for why fatigue is such a big issue to many, perhaps most, people with Wegs or similar autoimmune disorders.
    I read a paper about how muscles work and how body chemistry affects the muscle's ability to make use of the chemical energy used in contracting muscle tissue. It was understandable while I was reading it, not so much a couple years later. What I took from it was that a condition like Weg interrupts the chemical reaction, accounting for muscle fatigue, my biggest issue for the last 4 months. Like an old cell phone battery that runs down fast, I have to lay down to recharge the muscles. Recharging takes much longer than discharging. On average, 5 min on my feet needs 30 to 60 min for recharge.

  7. #17
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    Quote Originally Posted by Birdie View Post
    I read a paper about how muscles work and how body chemistry affects the muscle's ability to make use of the chemical energy used in contracting muscle tissue. It was understandable while I was reading it, not so much a couple years later. What I took from it was that a condition like Weg interrupts the chemical reaction, accounting for muscle fatigue, my biggest issue for the last 4 months. Like an old cell phone battery that runs down fast, I have to lay down to recharge the muscles. Recharging takes much longer than discharging. On average, 5 min on my feet needs 30 to 60 min for recharge.
    That's a lot of recharge time for five minutes. My need to recharge accumulates over the course of a day. I do definitely feel the muscle fatique on a daily basis, when walking up a steep driveway or lifting something heavy. The muscles feel sort of like rubber bands getting stretched out too far. The theory you read about sounds plausible, and I also think there could be permanent blood-vessel damage throughout the body, including the muscles, which prevents the blood from adequately supplying the muscles with what they need to work. And there is also our brain, which may have been affected and become less good at telling the muscles what to do. My theories are based on little knowledge, though.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    That's a lot of recharge time for five minutes.
    And that's why I'm in a wheelchair.

    I don't get spoons in the morning, I get one small rusty bent olive fork. I use it up getting out of bed and into the bathroom. That takes anywhere from 5 minutes to 30 minutes. Rest during the day gets me spoons. 3:00 TO 6:00 PM I've got enough spoons to get groceries, in a wheelchair, one bag at a time.

    On a good day I could go to a movie. Mmmmm, buttery popcorn...

  9. #19
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    What are Spoons?!
    I increased my prednisolone to 20mgs daily as instructed and so far feel worse. Still coughing up blood and my lungs feel as if they are being compressed! This was a symptom I had a lot before. However, I have to admit I feel a bit better at night. Does anyone else get woken up by a sinking feeling in their chest? I assume it's an ectopic heart beat.

    I am having a CT scan at the end of the week and then they'll discuss treatment options. I think it's going to be methotrexate though. The Dr said it would either be something IV or orally, I don't know why I didn't ask him what treatment is available. I did ask him whether it was something else in my lungs that was bleeding. He said that they'd looked at the tissue from the hospital that did the biopsy and it was vasculitis, most likely Wegener's.

    Bloom.

  10. #20
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    Hi Bloom,

    What are spoons? Read this: But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness

    As for your other issues:

    > 20 mg of pred may not be enough. Many of us were on 60+ mg at disease onset and during major flares.

    > Good that they looked at your biopsy tissue and got a pretty definitive diagnosis. Are any of your docs vasculitis specialists? If not, they can consult with one and get further guidance regarding treatment.

    > Before you see your doc again, write a list of questions you want answered - and don't stop asking until you have answers you understand.

    > The CT scan will probably show where the damage is and its severity. This is a good tool.

    Hope this helps!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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