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Thread: Diagnosed, Devastated, & Defenseless

  1. #11
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    Quote Originally Posted by Kvincent13 View Post
    got a pretty full pill sorter
    Do you know your C-ANCA level? Get it included in blood tests so you find out if it's an indicator in your case. It could get you safetly off the cytoxin, much sooner.

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    Kvincent13, I'm so happy you joined! Thank you!! Maybe we can learn a few things or two?

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    Joni, there is lots of valuable info in what has already been written here. So I mainly want to say welcome to the forum, and I hope you and your son will give us a few more details on the progression of his WG and the treatment he is getting. And I hope you will check in with the forum and other WG resources daily; this has saved my sanity and sense of well-being since my dx. And as someone said on another thread, don't believe everything that comes up in a Google search! We on the forum can help sort some of that out, and you also may search things here on the forum. Ask as many questions as you want, any time, share anything, and feel free to vent and complain whenever you want! We are here for all of that. Best wishes and good luck!
    Anne, dx'ed April 2011

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    Quote Originally Posted by Kvincent13 View Post
    Cytoxin (150mg daily)
    prednisone (50mg daily)
    prenisolone eye drops
    restasis eye drops (only taking this because it was very expensive, I won't be renewing this one)
    levoflaxim (750mg daily)
    bactrim (2 daily, for the bacteria that has grew in the cavity in my lung)
    Citrical
    Oxycodone

    got a pretty full pill sorter
    That's quite a list you have going! Is it levofloxacin (levaquin) or levoflaxim that you're on? The only reason I ask is that the former is a quinolone and is known to increase the risk of tendonitis and/or cause tendon rupture. Some of us on this forum suffer tendonitis from the disease even without being on quinolones. The oxycodone indicates you must be in a fair amount of pain. Stay strong!

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    Hi Joni and welcome to you and your son.


    Everyone else has said all of the great stuff that you need to know.

    I hope things come good, really quickly.
    Keep up the great work that you are doing for him.
    Our carers, loved ones and friends are an important part of a weggie lifeline. Thankyou for being here.
    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

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    Quote Originally Posted by MaxD View Post
    That's quite a list you have going! Is it levofloxacin (levaquin) or levoflaxim that you're on? The only reason I ask is that the former is a quinolone and is known to increase the risk of tendonitis and/or cause tendon rupture. Some of us on this forum suffer tendonitis from the disease even without being on quinolones. The oxycodone indicates you must be in a fair amount of pain. Stay strong!



    Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
    Thanks..

  7. #17
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    Quote Originally Posted by Joni View Post
    Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
    Thanks..
    The quinolones are a type of antibiotic. Levaquin is among the strongest of them. I took it and did get some twinges in my tendons when going up and down stairs, as well as some overall weakness in my legs and difficulty getting around, just for the week or so I was on the drug. Prednisone is also known for tendon issues, so if you are taking both, as I was, you need to be extra careful and pay attention to any of these symptoms, and maybe stop taking it if they are bad. Some people have had delayed reactions to these, too. Others have had no side effects. I took Cipro, another quinolone, probably a lighter-weight one, (and I know a lot less expensive than Levaquin), and had no problems. Docs have a way of just not mentioning these things, so it pays to be well informed. You can research the quinolones on the web, and the problems they can cause. But first make sure that was indeed what you were taking. I think it probably was, since I can't find "levoflaxim" in a Google search. Ask your doc about it.
    Last edited by annekat; 08-06-2015 at 06:56 PM.
    Anne, dx'ed April 2011

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    Quote Originally Posted by Joni View Post
    Hi MaxD.. Are the quinolones a type of drug? Also how long had you been diagnosed before you got tendinitis? Just wondering how many, if more, problems Kyle is going to have and the length of time it takes the problems to come along? I pray no more!! I'm sure once again it's the individual. Kyle is having an eye issue, would you recommend an optomitrist or ophthalmologist? I read something somewhere he should ask one of the Dr.s on his team for a referral to the later..
    Thanks..
    Joni,

    Anne wrote about quinolones. I had swelling and pain in my ankles before I was diagnosed. The prednisone hid that until I tapered down, then the pain and stiffness came back - at this point I was in remission so it was the result of prior damage and/or who-knows-what-else. Now it is manageable. Also, I was never on any quinolone, thankfully.

    As for Kyle's eye issues - he MUST see an ophthalmologist. (Optometrists are not MDs.) In fact, depending on his condition, the ophthalmologist may refer Kyle to a uveitis specialist if needed. I had red, scratchy eyes prior to diagnosis and the ophthalmologist gave me some steroid drops which took care of the problem. Fortunately it was a mild case and treated early.

    As long as Kyle sees his doctors and has regular checkups and follows instructions, it's very unlikely new symptoms will develop. Most likely he will feel progressively better and stronger.

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    Hi Joni,
    I am also a "WG Mom." My daughter was diagnosed about 18 months ago. She just turned 26. This forum has been extremely helpful to me in understanding both the disease itself and the personal toll it can take. You've already received helpful and important information here. What I can add is the parent perspective. I think for my daughter one of the most important ways I support her is to continue to see her as who she is and not a victim of this blasted disease. Initially, I was constantly asking her how she was feeling. I think she began to wonder if this was now how she would be defined. I quickly learned to stop asking all the time. She will share the ups and downs as she needs to and not on demand from me ( so to speak). You will become sensitive to your son's moods over time and learn how best to respond to his needs. Interestingly, my daughter wants nothing to do with this forum, although she knows I log in and follow it from time to time. Again, for her it's a matter of not letting WG take her over. Your son may experience this differently than my daughter, but my advice is to take your cues from him. Let him know you are always available to be a sounding board or to support in any other way he needs. Just always remember the disease is not who he is.
    Best wishes to you all.

  10. #20
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    Speaking as a patient the strongest advice I can give is to read up on the medications prescribed and their side effects, prepare yourself to be on the receiving end of the results, don't take it personally, etc.

    Prednisone is a steroid, we get 'roid rage' , mood swings, depression, cognitive failings, depression (and so-on). For the most part patients may not even realise their behaviour is abnormal (until perhaps after the've tapered down to a mild dose, or off it entirely).

    Also, eventually, the realisation that your life has changed forever strikes home - and that in itself may trigger anxiety, paranoia (unclean! out, out damn spot!), and depression.

    Remember that WG/GPA is an inflammatory disease, so things which trigger inflammation are likely to "make things worse" (yes, I mean "may possibly induce a flare").

    High Sugar (or at least, High GI) food "is killing you" (literally), it (temporarily) causes an inflammatory response, best to at least TRY to avoid them as much as possible.

    Long Distance flights REALLY (really really really) knock your immune system around, flaring after a flight does happen. (been there, done that)

    Any surgery you may have will almost certainly trigger a flare, post surgery (or accident/trauma) your immune system revs into overdrive (which is perfectly normal) but the problem is that WG _also_ kicks in and tries to kill you all over again. (but I had ONLY JUST FINISHED getting off pred ENTIRELY, and now you tell me I need MASSIVE doses again?)

    Remember that every body is unique, every case of WG is different. Treatment is more art than science. It's a delicate balancing act between a disease trying to kill you QUICKLY and drugs with side-effects which will probably kill you eventually. (or side effects which are worse than the disease, or "just" leave you feeling like death-slightly-warmed-up)

    Flares happen - Like The Spanish Inquisition.

    The Price Of Freedom Is Eternal Vigilance.

    For the record let me repeat myself: WG/GPA is an inflammatory disease so by definition that means your fitness and diet will have a large impact on your symptoms.

    https://news.usc.edu/63669/fasting-t...immune-system/

    Low GI foods are good, high fibre foods are good, "processed food" is bad, "preservatives" aren't just bad - they're evil, fermented foods (kimchi, kefir, probiotic yoghurt, pickles, certain spices, etc) are awesome, not-quite-all "immune boosting superfoods" are literally poison.

    Exercise works WONDERS , also if you're overweight now is the time to drop several notches from your belt - it'll probably save your life.

    I've previously posted many and various nuggets-of-wisdom I have learned as a result of becoming a patient.

    http://www.wegeners-granulomatosis.c...g-disease.html

    http://www.wegeners-granulomatosis.c...o-careful.html

    http://www.wegeners-granulomatosis.c...d-thought.html

    http://www.wegeners-granulomatosis.c...sary-evil.html
    Last edited by Pierre42; 08-21-2015 at 11:06 PM.

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