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Thread: Pred Uglies

  1. #41
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    Quote Originally Posted by marta View Post

    I so totally get that feeling of being completely spent and hearing the 'outside world' give advice on exercise and how to treat your disease. It use to drive me nuts at the beginning, but now I just let them say their thing, knowing full well that it's completely well intentioned, and smile and then ignore them. They're just trying to do whatever they think they can to help. I always say that it's easier being the Weggie than the loving bystander. At least we know we're doing something even if we're on the couch surviving.

    I also get that feeling of looking in the mirror while on pred, not recognizing yourself, hating what you see, and then hating yourself for that reaction. I think we're so hard on ourselves. "Don't be so vain Marta", and then your family catches you being disgusted at that moment you catch a mirror glimpse, and you hear "Don't be so vain Marta. Nobody cares." Then you go downtown and see people you've known for decades who can't recognize you from two feet away until you open your mouth and they hear your voice. It sucks. It so totally sucks. I feel like crying just thinking about how much it sucks, but you can't react to it because instantly there is a label of 'pride and vanity' attached to this reaction. Then you hear people say.... "Yeah, well I'm fat naturally, so don't complain." What I want to say is (and I will here because this is a safe space for Weggies) "Yeah, but you didn't go from your normal look, that you've had for decades, to THIS in 3 weeks. You got to get used to how you look over a long period of time. It's not a shock that a stranger is looking back at you every time you go by a mirror." But you can't say that because then it becomes twisted into a vanity thing again. I'm not a vain person. At least I don't think I am. I don't own make-up. I don't spend a bunch of time in front of the mirror. I don't spend a bunch of money on wrinkle cream. I probably should. But I don't. So it really really gets my goat when people tell me not to be so vain when I'm hating my pred equivalent of bad plastic surgery. There. I have vented. Sorry. But anyone who hasn't been on pred and have had their entire body, face, look drastically altered because of it, can't be giving advice on this one. That's why I wanted to post those pics though. Because when you're in the thick of it (ha ha - pun not intended) it's hard to see the other side, and it feels like you're stuck here for ever.

    .facebook_1506777251511.jpg

    P.s. 1. I took today for the first time in years only 4mg pred. Going to try first only one day a week with 4mg for a while. Then 2 days etc. Only if I will not get the crazy headaches. I dread them. Thanks for the guidance and inspiration marta ❤

    P.s. 2. I am also on budezon for my colitis. It is a much more friendly steroid with less side effects.
    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. #42
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    Yeah Alysia, I hope it goes well. I don't think you'll notice much of a difference with taking 1mg down, once a week. I hope it goes completely painless for you and that you see that it is in fact an achievable goal. I know you'll do great.

    Susan, the 100mg of pred I only took while getting Rituxin infusions, otherwise I was on 60mg at my highest as an ongoing thing. Once during this exercise I have had three days of 1,000mg of solumedrol. That's the equivalent of about 1,500 mg of pred (so like 4,500mg of pred in three days - woooooo hoooooo.) That's when things got really bad and they wanted to use the steroids to completely knock the crapola out of the inflammation process. It was a crazy weird experience. Remember the Seinfeld episode where Kramer got free coffee for life with a lawsuit he was initiating against a coffee shop. The last scene of the episode he was talking a mile a minute because he was so hopped up on coffee??? That was me on solumendrol. People came to visit me in the hospital and I just couldn't shut up. Super fast too. It was hilarious. People's jaws would drop seeing me so full of energy. "I thought you were sick" they would say. It was during this spell that I put together the survey for Weggies that Andrew promoted on here and we ended up having the results get published in a medical journal last year. So good things can come out of a steroid high. Ha ha.

    Actually when you make it through each ordeal, much of this experience is kind of funny in hindsight.

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  5. #43
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    Quote Originally Posted by Susan55 View Post
    I am trying to understand how you go down to say 4mg when the pills come in 5 mg dose? Something I am not understanding or miss reading. I started at 50 mg Sept 12 and down to 30 for the last week and now starting today down from 30 to 20. I think this is just too fast, but this is the order's by Rheumy and then in 2 weeks I go down to 10 mg and from there I don't know the dose.
    I now understand my my mid back hurts so bad
    Hey Sue,

    you're dropping super quick by the sounds of it.
    I know you're an old pro at pred, but this is a different animal (WG) so be very aware of how you're feeling and adjust accordingly.
    I remember reading many discussions in my early days on here about people weaning too fast and setting off a flare.
    The problem with setting off a flare is that it's been shown that with each subsequent flare, it's harder for the meds to work and it takes more medication to do the same job as before. I personally do anything to avoid flares like the plague. So if weaning the pred a little slower will potentially decrease the chance of triggering a flare with the wean, do it.

    Bellow 20, you should be dropping in much smaller increments. My first go I flared at 17.5mg. It also coincided with me getting a flu shot (which is when I actually made the connection of my trigger, but that's a different topic) but just worth knowing.

    As for the smaller increments. Ask your doc to give you prescription for 1mg pred. You will certainly need it below 10mg, and also once you get bellow 20mg it helps with managing the dose and wean much better. Call me at home if you wanna chat about it.

    If something is hurting bad, I would recommend going back to the last dose for a bit until it stops, then do a much smaller drop and see how you feel with that. Doctors really like to tell us how to wean fast, but I'm certain than none of them (or very few if any) have been on high doses of steroids for extended periods of time. That's why my doc is so awesome. She really leaves it up to my discretion on the speed of the wean.

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    Quote Originally Posted by marta View Post
    Hey Sue,

    you're dropping super quick by the sounds of it.
    I know you're an old pro at pred, but this is a different animal (WG) so be very aware of how you're feeling and adjust accordingly.
    I remember reading many discussions in my early days on here about people weaning too fast and setting off a flare.
    The problem with setting off a flare is that it's been shown that with each subsequent flare, it's harder for the meds to work and it takes more medication to do the same job as before. I personally do anything to avoid flares like the plague. So if weaning the pred a little slower will potentially decrease the chance of triggering a flare with the wean, do it.

    Bellow 20, you should be dropping in much smaller increments. My first go I flared at 17.5mg. It also coincided with me getting a flu shot (which is when I actually made the connection of my trigger, but that's a different topic) but just worth knowing.

    As for the smaller increments. Ask your doc to give you prescription for 1mg pred. You will certainly need it below 10mg, and also once you get bellow 20mg it helps with managing the dose and wean much better. Call me at home if you wanna chat about it.

    If something is hurting bad, I would recommend going back to the last dose for a bit until it stops, then do a much smaller drop and see how you feel with that. Doctors really like to tell us how to wean fast, but I'm certain than none of them (or very few if any) have been on high doses of steroids for extended periods of time. That's why my doc is so awesome. She really leaves it up to my discretion on the speed of the wean.
    Hi Marta
    I totally agree with you and I've been thinking to my self wow she is dropping the dose way to quickly. When I would take it for COPD, it would go down by 5mg etc etc.
    And I have to wait to more weeks to see her . I also don't like how I have to start treatment and wait ONE month to go back to see her! I tried calling her office to go in last week and they said "sorry were booking for the new year now" . So, if I have symptoms and needs answers I just sit at home and wait. I don't like this at all and not happy.
    When I saw her 2 weeks ago, after exam (and previous stomach issues which I was told it was nothing by family Dr) she said I believe you have Pancreatitis and if symptoms get worse (which they have) we will have to change your meds next time I see you. So, since the lower of the dose so quickly I am feeling so much more
    back pain, stomach pains and swelling. OH and my rash is slowly coming back since the dose has been lowered and it feels like I have a cold coming on . I think it's all from the dose being
    lowered to quickly.
    My tummy is swelling up so big I look 5 months preg , lol. but so very painful and back hurts so bad. I'm not sure how to find a dr I can just call the office and ask questions as to what to do etc.


    My son is here visiting from San Fran so I will call you Tuesday if that is OK? I'm having such a nice visit and I'm actually laughing for the very first time in months. Yes, I have the pain etc, but having him
    here is really helping me mentally.

    HUGS TO YOU MARTA XOXOXOXO

    HAPPY THANKSGIVING TO ALL MY CANADIAN WEGGIES




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  9. #45
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    Quote Originally Posted by marta View Post
    Yeah Alysia, I hope it goes well. I don't think you'll notice much of a difference with taking 1mg down, once a week. I hope it goes completely painless for you and that you see that it is in fact an achievable goal. I know you'll do great.

    Susan, the 100mg of pred I only took while getting Rituxin infusions, otherwise I was on 60mg at my highest as an ongoing thing. Once during this exercise I have had three days of 1,000mg of solumedrol. That's the equivalent of about 1,500 mg of pred (so like 4,500mg of pred in three days - woooooo hoooooo.) That's when things got really bad and they wanted to use the steroids to completely knock the crapola out of the inflammation process. It was a crazy weird experience. Remember the Seinfeld episode where Kramer got free coffee for life with a lawsuit he was initiating against a coffee shop. The last scene of the episode he was talking a mile a minute because he was so hopped up on coffee??? That was me on solumendrol. People came to visit me in the hospital and I just couldn't shut up. Super fast too. It was hilarious. People's jaws would drop seeing me so full of energy. "I thought you were sick" they would say. It was during this spell that I put together the survey for Weggies that Andrew promoted on here and we ended up having the results get published in a medical journal last year. So good things can come out of a steroid high. Ha ha.

    Actually when you make it through each ordeal, much of this experience is kind of funny in hindsight.
    Hi Marta

    Wow, I can't begin to imagine being on such a high dose and hope and pray I don't have to go there one day. When I was just taking 50mg my head and thoughts were not clear in anyway. I hated every second of each day, it's the worse drug I have ever taken that I dislike so much. For a short period of time (when taken for COPD flareups) I could handle it, but this is crazy, lol.
    I admire you for your strength and your fight and your so positive along with the rest of the group. I'm not there just yet . Trying to get there mentally but it will come.

    But I do need to talk to you Marta and will call you Tuesday..sue

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    Quote Originally Posted by Alysia View Post
    .facebook_1506777251511.jpg

    P.s. 1. I took today for the first time in years only 4mg pred. Going to try first only one day a week with 4mg for a while. Then 2 days etc. Only if I will not get the crazy headaches. I dread them. Thanks for the guidance and inspiration marta ❤

    P.s. 2. I am also on budezon for my colitis. It is a much more friendly steroid with less side effects.
    Hi Alysia

    Love the pic you posted...yes that feels like us weggies for sure and your right, just walk away from people and their comments. I understand some are just wanting to help, but when they give their comments with attitude then I don't like it at all! That's what I am getting from a friend. But, I am just staying my distance from her for a bit and when I do see her I don't want to talk about it. I have enough to deal with right about this time.
    Now, having to look into the mirror when the swelling gets bad not sure if I am ready for that or not. I guess I have to be nothing I can do to stop it, it's just all part of the gpa and have to take it one day at a time and still learn to love my self for the person inside this different body.

    I hope your 4 mg of pred help, please keep us updated how your doing.
    Hugs Alysisa

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  13. #47
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    Hi Sue,
    Thank you for your caring ❤
    I am sorry that your symptoms are back because of reducing the pred too fast. Go back to where it was ok and after feeling better start to reduce in 5mg each step. Dont continue to reduce until you feel good enough.

    As for people who do understand, here is another one :

    FB_IMG_1507397925781.jpg
    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. #48
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    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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  17. #49
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    Default Pred Uglies

    How did this thread get the titled dropped? Anyway, I put it back on.

    Marta, I haven't seen this much from you in the past 3 years! Way to go, girl!

    I hope Bob is right on there being a pred sub. It is a wonderful, but evil drug.

    Good thread guys.... lots of good info.

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  19. #50
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    Default Re: Pred Uglies

    Quote Originally Posted by Alysia View Post
    Hi Alysia
    I'm just wondering if I should increase the meds or wait until I go to the the lab (tomorrow) the Dr. wanted to see if med's were working or not. Not sure if it would show up in blood test if inflammation is going down or not. I don't know what blood test whould show that or could show that. Still learning what each blood test will show the Dr.
    I am sleeping so much better on a lower dose of pred but symptoms are worse. OH what to do. I'm think wait until after blood work tomorrow and then increase it. shouldn't I get going down by 5mg week? not daily right? I also see my face seems fuller, darn.
    Love the pictures so much, it so just nice knowing all of you are here with so much support for us new people (everyone here) and I just want to give all of you big hugs.

    My son leaves tomorrow Then back to being alone. Having him here I think is why I am finally sleep a bit more. Having way less anxiety with him here.

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