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Thread: How are you doing ?

  1. #11
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    Default Re: How are you doing ?

    Thanks! Glad to be back. Things certainly have never went the way I expected after my 2012 diagnosis. I am sure everyone here can say something similar!

    My healthcare has been a rollercoaster ride--forward/backwards--up/down--IN THE DARK!!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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  3. #12
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    Default Re: How are you doing ?

    You are a saint for asking! Iím feeling pretty low. I havenít been on this site for many years (6) because I was in remission. This past April after 7 years remission I had a sudden dramatic relapse and was in hospital with stage 4 kidney failure. Never had renal involvement before. Last time I got into remission fairly quickly, within 8 months. I guess I didnít appreciate how lucky I was. Since COVID it seems like a lot of the doctors at the vasculitis center have left so I donít have a relationship with anyone there now. I know everyplace is understaffed now. But Iím being treated by a fellow in nephrology (not associated with the vasculitis center) who isnít a specialist in vasculitis. She consults with a nephrologist who is but I feel swept under the rug. The nephrologist I see is so sweet and calls or messages occasionally even though they have her working nights. I just feel that with my severe relapse that the expert nephrologist could at least have met me or spoken to me once. Instead of shoving me off to a fellow who is doing the best that she can. Iím worried about my care and am feeling very depressed and hopeless about it. I had an in person appointment May 31 (2022) and televisit in June but that is all. In September I finally messaged through the patient portal to the doctor that is seeing me about some of my concerns about treatment being stalled. She messaged me back and I got my first rituximab infusion Sept 29. I also evidently have no antibodies to anything except COVID (interestingly enough). I am supposed to start subcutaneous antibody therapy. This level of care is so different from my first diagnosis. But everything was so different. Everything that could go right did go right. This time everything that could go wrong has.
    Anyway, thanks for the opportunity to vent.
    Even if this just goes into the void it helps.

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  5. #13
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    Default Re: How are you doing ?

    little sister, I'm sorry to hear things are going badly for you. I'm feeling low too, so we can be grumpy together. My story's similar but kind of opposite to yours. I had kidney failure in 2005 but they recovered somewhat and I've been in remission with stage 3 CKD since then. Came off meds about 5 years ago.

    Anyhoo, now I've relapsed. Have had severe joint pain for 3 weeks and bloods taken yesterday were all over the place. Kidneys have taken a further hit and I'm just praying they hold up above stage 5. Got 60mg pred to take and Cyclophosphemide infusions incoming.

    I know I should have expected this to happen, but after 17 years of remission you kind of forget about ever being ill. So it sucks, and I'm sad.

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  7. #14
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    Default Re: How are you doing ?

    Little sister and tmesis, I'm sorry to hear that you both feel so crappy. I sure hope you will find the care you need, and recover soon!
    Living with WG/GPA since june 2010...

  8. #15
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    Default Re: How are you doing ?

    See, I knew I should realize how lucky I am and count my blessings! How do you manage your diet? This has been very hard for me, the information seems to change and you have to be careful when you google that you're getting the newest info.
    Has your doc brought up avacopan (Tavneos)? It was just approved 10/2021 for GPA and it can help you get off the prednisone more quickly. I saw someone here talking about side effects but I haven't had any. Certainly nothing compared to Cytoxan.
    I know what you mean about forgetting this illness after remission. 17 years is a long time. 7 years is longer than average. I didn't know until my relapse but evidently the average remission is 5 years.

  9. #16
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    Default Re: How are you doing ?

    Quote Originally Posted by little sister View Post
    How do you manage your diet? This has been very hard for me, the information seems to change and you have to be careful when you google that you're getting the newest info.
    I haven't changed much, just reduced my salt intake, cut out alcohol and added a lot more green veg. At the moment my bloods are all in the normal range, kidney function & inflammation notwithstanding. Do you have a nutritionist? Quite a few of my fellow Cyclophosphamide day patient buddies have specialist dietary advice.

    Quote Originally Posted by little sister View Post
    Has your doc brought up avacopan (Tavneos)? It was just approved 10/2021 for GPA and it can help you get off the prednisone more quickly. I saw someone here talking about side effects but I haven't had any. Certainly nothing compared to Cytoxan.
    No, I don't know about avacopan. I know he was dithering a bit at first (I assumed it was between Cyclophosphamide & Rituxan) but he decided quite quickly on Cyclophosphamide because we know it worked well first time round - although back then I was on tablets rather than infusions. I've not had any side effects so far and am down to 25mg pred, dropping to 20mg on Wednesday. Really hoping for quick remission like last time.

    Potential upset is that I may have a growth or growths of some description on my left kidney - but I'm still waiting for the doctor to read the ultrasound scan report & tell me what's going on & next steps. I've been flip flopping between 'oh my god it's cancer' and 'nah, the immunotherapy will just vanish it' for 2 weeks now. On the upside, I feel completely well in myself & am able to crack on with work and childcare and stuff, soooo... this is fine.

    UPDATE 9th Nov: Dr finally called about the scan. It's just a simple cyst!! This is more than fine.
    Last edited by tmesis; 11-09-2022 at 10:54 PM.

  10. #17
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    Default Re: How are you doing ?

    The avacopan is taken along with cytoxan but replaces prednisone (at least in my case). Now my kidneys have improved enough to get off cytoxan and I'll get rtx every 6 months in addition to avacopan daily. Avacopan is a new targeted drug that is more effective for GPA and has fewer side effects than prednisone. But it is expensive.

  11. #18
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    Default Re: How are you doing ?

    Quote Originally Posted by little sister View Post
    The avacopan is taken along with cytoxan but replaces prednisone (at least in my case). Now my kidneys have improved enough to get off cytoxan and I'll get rtx every 6 months in addition to avacopan daily. Avacopan is a new targeted drug that is more effective for GPA and has fewer side effects than prednisone. But it is expensive.
    Oh, I see! I don't think it's available on the NHS yet, although it looks as though it will be. Fingers crossed your kidneys keep on improving!

  12. #19
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    Default Re: How are you doing ?

    Hello All,
    Only just spotted this thread, so I'll give a quick update.
    Main thing is that my WG is still in remission and my transplanted kidney is still doig quite well at around 35%.

    I have suffered for over 20 years with crushing fatigue. Over the many years the fatigue has been attributed to many of my conditions, e.g. renal failure, Wegener's, sleep apnoea, anemia, etc, etc. All these conditions have been managed, but I've never felt any benefit, even including the transplant.
    I have now been diagnosed with fibromyalgia, which really does explain why none of the treatments for my other conditions changed my lack of energy. Unfortunately, there is no cure/treatment for Fibromyalgia.
    Diagnosed April 1995

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