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Thread: "All good news"

  1. #11
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    Great news Pete!
    I'm still in a bit of a rut. My relapse symptoms have worsened, especially this last week. All my bloods are coming back good, in fact my ANCA has just gone negative for the first time in 14 months (goes to show you can't rely on ANCA). My nephrologist, who deals with my WG, is now quite concerned as it's been over 2 months on high dose Pred and Aza. This has always knocked my relapses back into remmission, but it doesn't seem to be working this time. He's giving me to the beginning of January and if no improvement I'll be on something stronger.
    It will have to be RTX as I previously couldn't tolerate Cyclo and MTX isn't suitable due to kidney failure. He mentioned Mycophenolate but from what I've read it doesn't seem much more powerful than the pred/AZA combo I'm already on.
    There is still some issues with obtaining RTX on the NHS, but I'm hopeful I can get it AND tolerate it, otherwise there's no other treatment I'm aware of.
    I'm at the cardiologist next week as the heart issue is getting worse every day. My nephrologist has aid he will also get a rheumatologist involved if I need stronger drugs in January.

    I really need to be much better by May as we have a holiday to Cyprus booked. I couldn't get insurance for it as I booked when my ANCA was positive, so if we miss the holiday we won't be able to claim any of the money back.
    Diagnosed April 1995

  2. #12
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    Gilders.I am sorry to hear you are not getting any better. I don't understand, if your blood and anca are coming back good. What is the matter. Are they saying your kidneys getting worse from a urinalysis?
    And what it the matter with your heart ??? I was out to dinner last night and ran into a cardiologist I used to worked for and as we were talking my wegeners came up and he said he just had a patient last week with wg where her heart was enlarged and she had fluid around her heart...but they changed some of her meds and she is doing fine now.He gave me the phone where he is working at now and said he would be happy to take me as a patient. So I'm going to call on Mon. Maybe that is what you need is a change on your meds. I hope it all works out well soon ,I know how much you are looking forward to your holiday. I will keep you in my prayers
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #13
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    I'm so sorry gilders. Heart involvement sounds so scary.
    Phil Berggren, dx 2003

  4. #14
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    Quote Originally Posted by pberggren1 View Post
    I'm so sorry gilders. Heart involvement sounds so scary.
    Me, too, Gilders. I hope that they can figure out what this is and that it turns out not to be WG affecting your heart, and/or some sort of med adjustment could make a difference. I hope and pray for a turnaround in your condition, and that you can go on that holiday as planned. We would love to see pics from Cyprus.
    Anne, dx'ed April 2011

  5. #15
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    Quote Originally Posted by gilders View Post
    Great news Pete!
    I'm still in a bit of a rut. My relapse symptoms have worsened, especially this last week. All my bloods are coming back good, in fact my ANCA has just gone negative for the first time in 14 months (goes to show you can't rely on ANCA). My nephrologist, who deals with my WG, is now quite concerned as it's been over 2 months on high dose Pred and Aza. This has always knocked my relapses back into remmission, but it doesn't seem to be working this time. He's giving me to the beginning of January and if no improvement I'll be on something stronger.
    It will have to be RTX as I previously couldn't tolerate Cyclo and MTX isn't suitable due to kidney failure. He mentioned Mycophenolate but from what I've read it doesn't seem much more powerful than the pred/AZA combo I'm already on.
    There is still some issues with obtaining RTX on the NHS, but I'm hopeful I can get it AND tolerate it, otherwise there's no other treatment I'm aware of.
    I'm at the cardiologist next week as the heart issue is getting worse every day. My nephrologist has aid he will also get a rheumatologist involved if I need stronger drugs in January.

    I really need to be much better by May as we have a holiday to Cyprus booked. I couldn't get insurance for it as I booked when my ANCA was positive, so if we miss the holiday we won't be able to claim any of the money back.
    Hi Pete,
    I am sorry that you are not getting better. are you not getting the rtx yet because it is not approved yet for you ? maybe you need to insist more on it ?
    I am sending you warm hug
    take care and update us.
    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.

  6. #16
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    Thank you all for your kind words. I don't want to hijack Pete's good news thread with my not so good news, so I'll find one of my old posts to update about myself and explain how my relapse is worsening, even though ANCA is improving.
    Diagnosed April 1995

  7. #17
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    Pete, that is fantastic news about your bloods.

    Look out 2014


    Other Pete (gilders), it's just one thing after another. I'm sorry that you are still struggling.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  8. #18
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    Gilders,

    I sure do hope you can find a way to good health so you can enjoy your trip to Cyprus. Illegitimus non carborundum est (Don't let the bastard grind you down)!
    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

  9. #19
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    I had my periodic appointment with Dr. Villa Forte on Monday. My lab work has all been within the normal range for the past two months now. We discussed future treatment plans. She does not contemplate prescribing any more rtx unless I show symptoms. She is unsure about the long-term effects of rtx in treating GPA. I'm OK with that knowing that it's there if needed. We also talked about my fatigue the day after I take my mtx (20 mg/wk). She suggested trying 17.5 mg/wk to see if that side-effect lessens. I tried it this week and felt a little better today than usual. I'll see how it goes for a couple of weeks. If the fatigue continues, she said I could go down to 15 mg/wk, but no lower. I'm also tapering pred. Now down to 6 mg/day. Since I'm recovering from a cold, she said not to drop down to 5 mg/day unless I was symptom free. Once that's the case (probably this weekend), I'll continue the taper at 1 mg less every four weeks. If symptoms arise, I'm to call her for guidance.

    My hearing seems to be deteriorating. Going to see the audiologist next week for a hearing test and hearing aid adjustment (if needed). If the test shows actual deterioration, I'll call Dr. Villa Forte and see what she suggests. I think my ENT has left OSU, so I may need to find another one.

    I've been a bit of a slug lately as far as working out is concerned. Just haven't had the energy since I had the tooth pulled and the cold. Now that the weather is breaking, I'll make time to get back out and start walking the neighborhood loops tomorrow. My wife and I have been watching the grandkids a couple days a week while their mom recovers from having her gall bladder removed. I get my exercise those days chasing the one-year old around and lifting her up to point her in a new direction. It's fun, but they do wear us out. (Now I understand why parenting is for the young!!)
    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

  10. #20
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    Hi Pete,
    thanks for sharing. you were relatively "quiet" around here, so I was wondering how are you.... I am glad that you are busy with your sweet grandkids.
    I wonder about the rtx: as far as I know, and this is what my wg-doc is telling me: I need to get it every 6 month, 1000mg (2000mg is for flaring).
    but maybe you don't need more because you are "covered" by Imuran or MTX ? (they didn't work for me)
    I am sorry to hear about your hearing. I hope it is not serious. please update us.
    sending you lots of hugs
    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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