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Thread: 20 year old son

  1. #211
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    Hi, how are you all?
    Since my son got married and moved out, I haven't frequented this site much (there should be a law against that).
    He has been doing well, thank God, but his sinuses keep acting up.
    It has never been clarified if the sinuses were related to the Weg's.
    Currently, he's on cellcept, on a study for avacopan with 10/15 mgs of prendisone.
    His disease usually affects him in the lungs, kidneys, sinus/colds, joints and skin rashes.

    Lately, this past week, he has been having headaches. Motrin/tylenol not accomplishing much.
    Dr.'s put him on antibiotics for a possible sinus infection.

    Do you think the headaches are another symptom?
    Does Weg's manifest itself in different ways during a flare up?

    Thank you so much and wishing all well.
    Hi, Nice to see you around, although we can guess that when you are not, it might mean that Yosef is doing good, which is great.

    Congratulations for his wedding and many blessings.

    Each flare indeed might look totally different and include other organs. My wg moving as it wish between lungs, nose, ears, joints, eyes, colon and skin (bleedings under the nails).

    I think we can say that when one has sinus issues, it is WG when the nose's productions are bloody. Mine includes streams of blood from the nose. Also big crustings which might be colorful but comes with blood (fresh or dry). Sorry for the gross description, but it helps to know how wg looks like when it attackes the sinuses/ nose. It also included nose pains and headaches. Sometimes all the face is aching.

    Sinus infection which is not wg related will not be bloody or will have only tiny traces of blood if any, as a result of blowing the nose or so. The productions might be without color, green or yellow. It will react well to antibiotics IF one gets the right antibiotic.

    Usually if its WG it will attack not only the sinuses although it might stay only there.

    Headaches can be the result of the sinuses infection.

    I also have crazy headaches if I try to reduce my pred even in a tiny bit.

    Also worth checking his eyes. My younger son complained about headaches and he just needed glasses and the headaches were gone.

    If his headaches will continue please consult with his wg dr.

    Sending you prayers. Shabat shalom.
    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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  3. #212
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    Default Re: 20 year old son

    Quote Originally Posted by seied View Post
    I think that prednisone and motrin (ibuprofen) don't mix, take tylenol instead.

    https://www.drugs.com/drug-interactions/motrin-with-prednisone-1310-780-1936-0.html
    Thank you. My mistake. He did tell me Tylenol.

    Sent from my SM-G920V using Tapatalk

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    Default Re: 20 year old son

    Quote Originally Posted by Alysia View Post
    Hi, Nice to see you around, although we can guess that when you are not, it might mean that Yosef is doing good, which is great.

    Congratulations for his wedding and many blessings.

    Each flare indeed might look totally different and include other organs. My wg moving as it wish between lungs, nose, ears, joints, eyes, colon and skin (bleedings under the nails).

    I think we can say that when one has sinus issues, it is WG when the nose's productions are bloody. Mine includes streams of blood from the nose. Also big crustings which might be colorful but comes with blood (fresh or dry). Sorry for the gross description, but it helps to know how wg looks like when it attackes the sinuses/ nose. It also included nose pains and headaches. Sometimes all the face is aching.

    Sinus infection which is not wg related will not be bloody or will have only tiny traces of blood if any, as a result of blowing the nose or so. The productions might be without color, green or yellow. It will react well to antibiotics IF one gets the right antibiotic.

    Usually if its WG it will attack not only the sinuses although it might stay only there.

    Headaches can be the result of the sinuses infection.

    I also have crazy headaches if I try to reduce my pred even in a tiny bit.

    Also worth checking his eyes. My younger son complained about headaches and he just needed glasses and the headaches were gone.

    If his headaches will continue please consult with his wg dr.

    Sending you prayers. Shabat shalom.
    Thank you Alysia, your words are always beneficial.

    The doctors thought it was sinus related, as his markers were good and there was no blood or crusting from the nose.

    It's July 4th weekend here, so it is not the easiest making contact today.

    Thank you again,

    Shabbat Shalom!

    Sent from my SM-G920V using Tapatalk

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  6. #214
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    Default Re: 20 year old son

    Sinus trouble is the most consistent and persistent of WG problems. It can be present even when WG is mostly quiet. Also, with some sinus damage a person becomes more prone to sinus infection. For me , it has been a lifelong battle to deal with sinus problems. For me, sinus trouble seems to be most often a combination of WG and infection. So , just treating one cause doesn't yield great results. Add to that the fact that even at my best I have always had SOME degree of sinus trouble. It becomes difficult to to know what I just need to live with and what to seek treatment for.
    A gift of a never ending puzzle.
    I think the most important thing for someone with WG is to take very good care of sinuses. Wash twice a day with salt/soda and add Alkalol during times of extra trouble. The Alkalol is soothing, anti mucus and mildly antibiotic - helpful no matter the root of the trouble .
    The frequent washing will discourage infection from settling in. Staph infection is common in the sinus of WG patients and Staph has been proven to cause relapse. This is in fact why WG patients are put on Bactrim.
    Treat the sinus with extra care. It is more important than it seems.

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  8. #215
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    Default Re: 20 year old son

    Nice to hear from you, Aneinu, and that things are going pretty well for your son. I can't add to what others have said about symptoms of flares. They are right. Big congratulations on your son's marriage and I hope things continue to go well.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: 20 year old son

    The Philadelphia doctors are concerned about his headaches. However, they do not want to give ibuprofen or strong pain medication, for they are detrimental to the kidneys. If headaches persist, they wanna see him on Monday. He did not sound too good on the phone.

    Sent from my SM-G920V using Tapatalk

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  12. #217
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    Default Re: 20 year old son

    I'm sorry you had to repeat about your son's headaches, as I didn't show adequate sympathy for that. It must be disheartening to have him not sounding very good on the phone. Headaches are troubling when you don't know the cause. I have taken Ibuprofen in the past for various pains, and my kidney numbers were always OK. But last year I got very anemic and needed a blood transfusion, and the docs figured my ibuprofen use had caused some serious bleeding in my GI tract. Since then, I have only taken Tylenol, except for meds for nerve pain, and the anemia and blood in the stool have not returned. Unfortunately, Tylenol isn't very effective, for me, against serious pain. So I hope your son's doctors can figure out the cause, and soon! There may be meds he can take, for a specific type of pain, that won't affect his kidneys. Better yet, some other type of therapy could be available, once they know the cause. Best of luck to you both.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 07-07-2019 at 12:52 PM.
    Anne, dx'ed April 2011

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  14. #218
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    Default Re: 20 year old son

    PS the advice from me2 about diligent nasal/sinus rinsing was good, and also his mention of Alkalol. I have used it, it is all herbal and natural substances, and it can be therapeutic and soothing, though in my case it needed to be diluted because it was too strong right out of the bottle. I ended up using a medicine dropper to add it, by experimentation, to my sinus rinsing solution. Also at some drug stores I had to order it to be picked up at the pharmacy. I had actually forgotten about it.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: 20 year old son

    Quote Originally Posted by annekat View Post
    PS the advice from me2 about diligent nasal/sinus rinsing was good, and also his mention of Alkalol. I have used it, it is all herbal and natural substances, and it can be therapeutic and soothing, though in my case it needed to be diluted because it was too strong right out of the bottle. I ended up using a medicine dropper to add it, by experimentation, to my sinus rinsing solution. Also at some drug stores I had to order it to be picked up at the pharmacy. I had actually forgotten about it.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    No worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably will be going for head imaging tomorrow. I'll keep you posted. Thank you

    Sent from my SM-G920V using Tapatalk

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  18. #220
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    No worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably will be going for head imaging tomorrow. I'll keep you posted. Thank you

    Sent from my SM-G920V using Tapatalk
    So sorry about his headaches and night sweats. I am glad they are going to check his head.
    Night sweats can be an indication to wg activity. But can also be related to some virus or infection. How are his labs ?
    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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