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Thread: 20 year old son

  1. #201
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    Default Re: 20 year old son

    Few points:

    According to the protocol of how to give rtx, the second infusion is given in much faster rate. If the first one takes about 7 hours for me, the second is around 5-6 hours. So maybe indeed a slower rate at both infusions might be without events for Yosef.

    Flares do not allways show up in the bloods or urine tests. Only in 2 of my flares my blood tests showed it. In others and also while smoldering, my labs were not too bad, except from Pr3 which get elavated before a flare. But some weggies are anca negative so this might not give an indication. My wg dr. says to look at the symptoms first of all. We need to listen to the body and be on guard.

    Yosef is so young, so on the one hand it is good for him that he is not taking the WG too seriously. On the other hand, too much denial can cause him not to pay enough attention in the right time to changes in his body, and to neglect serious treatment. Maybe some counseling can help him to find the right balance ?

    Praying for wisdom and strength.
    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. #202
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    Default Re: 20 year old son

    Thank you. The second one is always done very slow, but still there was a severe reaction.
    Quote Originally Posted by Alysia View Post
    Few points:

    According to the protocol of how to give rtx, the second infusion is given in much faster rate. If the first one takes about 7 hours for me, the second is around 5-6 hours. So maybe indeed a slower rate at both infusions might be without events for Yosef.

    Flares do not allways show up in the bloods or urine tests. Only in 2 of my flares my blood tests showed it. In others and also while smoldering, my labs were not too bad, except from Pr3 which get elavated before a flare. But some weggies are anca negative so this might not give an indication. My wg dr. says to look at the symptoms first of all. We need to listen to the body and be on guard.

    Yosef is so young, so on the one hand it is good for him that he is not taking the WG too seriously. On the other hand, too much denial can cause him not to pay enough attention in the right time to changes in his body, and to neglect serious treatment. Maybe some counseling can help him to find the right balance ?

    Praying for wisdom and strength.
    Sent from my SM-G920V using Tapatalk

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  5. #203
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    Default Re: 20 year old son

    The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

    God-willing, this should be an answer.

    Sent from my SM-G920V using Tapatalk

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  7. #204
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

    God-willing, this should be an answer.

    Sent from my SM-G920V using Tapatalk
    Your son will soon be very hungry. When I was on that dosage initially, I regained the 25 lbs I lost at disease onset plus 20 more. The last 10 have proven to be very stubborn...

    I hope he understands all the possible side effects of prednisone and experiences none. (You might want to get him a copy of "Coping With Prednisone" by Zukerman and Ingelfinger. I found it quite helpful.) I imagine Dr Langford would advocate a slower taper on the pred as he's still in the early stages of the disease and wants to keep the inflammation at bay.

    Hope things improve quickly!!
    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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  9. #205
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    Default Re: 20 year old son

    Quote Originally Posted by Pete View Post
    Your son will soon be very hungry. When I was on that dosage initially, I regained the 25 lbs I lost at disease onset plus 20 more. The last 10 have proven to be very stubborn...

    I hope he understands all the possible side effects of prednisone and experiences none. (You might want to get him a copy of "Coping With Prednisone" by Zukerman and Ingelfinger. I found it quite helpful.) I imagine Dr Langford would advocate a slower taper on the pred as he's still in the early stages of the disease and wants to keep the inflammation at bay.

    Hope things improve quickly!!
    Thank you so much.

    For the record, he's completing his third year of wegs, so he's very familiar with the preds and it's side affects; that's why he was advocating to start at 20 (not 60).

    Are you familiar at all with cellcept?

    Thank you.

    Sent from my SM-G920V using Tapatalk

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  11. #206
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    Default Re: 20 year old son

    I had forgotten that your son is three years in (another senior moment for the septuagenarian).

    I’m not at all familiar with cellcept. I took cytoxan for about 16 months after dx (sterility wasn’t a concern for me) and had a brief, unpleasant experience with immuran (I don’t think my doc did the enzyme test before he prescribed it.) I was as sick as I’ve ever been with a major wegs flare and pneumonia. I took methotrexate (15-25 mg/wk) for about two years. I started rituximab in late 2013 and have continued to tolerate it well. I got off mtx in 2015.
    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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  13. #207
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    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    The plan, as of now, is to use mmf cellcept for induction and maintenance, together with a healthy dose of preds (starting with 60 and taper to 10).

    God-willing, this should be an answer.

    Sent from my SM-G920V using Tapatalk
    Sounds like a good plan, considering his reactions.
    I was never on cellcept but I know many weggies are.
    I was on 60mg pred for 5 months at the onset of my WG in 2008. The docs here were totally ignorant about WG and they thought that pred alone is enough. Pred alone did clear my lungs back then, although didn't help my nose. Like Pete, I am on rtx since 2013, after I couldn't bear Imuran and mtx didn't work for me.
    For 2 years I also got bactrim which was helpful at that time.

    Sending you more 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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  15. #208
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    Default Re: 20 year old son

    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.

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  17. #209
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    Default Re: 20 year old son

    Another WG flare doesn't mean the symptoms will be the same. I had first flare with lungs and sinuses being the main targets...my 2nd flare attacked joints in legs & feet. Go figure! Headaches may be anything...perhaps a 'warning' that WGs is acting up? Best to you both.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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  19. #210
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    Default Re: 20 year old son

    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

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