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Thread: Pred Uglies

  1. #51
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    Default Re: Pred Uglies

    Quote Originally Posted by Susan55 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.
    Hi Sue,
    It can be a good idea to do the labs first although I am not sure how much difference it can show with the different doze of pred... ??
    maybe anyone else around knows ??

    You reduce in steps of 5 mg every week and according to your feeling. Listen to your body like you did with the pred when treating the COPD. Its the same pred.
    Are you on 20mg now ? Maybe you dont have to go back too high, maybe you can just add 5mg (total 25) and see if it helps ? Sometimes a bit more is all you need to stabilize yourself.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  3. #52
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    Default Re: Pred Uglies

    My update: Sorry to disapoint.. I quit. The try to take 4mg pred for one day, made me again that specific CRAZY headaches which dont respond to pains meds. I know it was the reaction for the lack of pred because my ears and joints also ached. It lasted about day and half. So that's it. Me and my 5mg pred for life. At least I sleep well and dont gain weight. The cataract will still be there and I try to excercise to keep my bones.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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  5. #53
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    Default Re: Pred Uglies

    Sue, Please remember that none of the people on this forum are doctors and we can't give advice on what you or anyone else should do with regard to drugs. All we can do is tell you what our individual personal experiences have been and then you have to take what you can from that. Always follow your doctor's advice.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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  7. #54
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    Default Re: Pred Uglies

    Quote Originally Posted by vdub View Post
    Sue, Please remember that none of the people on this forum are doctors and we can't give advice on what you or anyone else should do with regard to drugs. All we can do is tell you what our individual personal experiences have been and then you have to take what you can from that. Always follow your doctor's advice.
    Absolutely 100% what vdub said.
    I only share what my experience has been and would never ever ever tell anyone to do anything.
    I had the support of the people on this site when I had a doc that was not watching out for my best interest, and at that time I didn't feel comfortable having conversations with my doc to question my treatment. I know the strength and support I got here got me to my new doc that I can't imagine life without, but all of the decisions are made together with her - I'm very lucky to have a doc who isn't motivated by pride and can have a convo with a patient. But what I say on here is not in any way to be taken as advice of what to do. I am not a doctor. I'm just another Weggie, just like everyone else on here.

    Peace y'all.

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  9. #55
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    Default Re: Pred Uglies

    Quote Originally Posted by Susan55 View Post
    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



    Hey Sue,

    I'm seeing my doc on Friday and I'll ask her to tell me the name of a doc she highly recommended in Vancouver. I went to see 'Symphony Under The Stars' at the Fairmont Jasper Park Lodge and ran into her (my doc) at the concert. We actually spoke about you and she told me about this new lady in Vancouver and told me the name but I was having so much fun that I forgot it when I got home. Then I had Hana's surprise Birthday Party and immediately to Edmonton for my daddy who was in ICU while we were dressed in zombie outfits for Hana's b-day. I'm in the city right now because my daddy is in the hospital with congestive heart failure, so I'm near her. When I see her I'll ask again for her name but man she was highly recommended. Every doc, my doc has recommended has been truly amazing. I'll let you know after Friday. I'm going to a funeral on Saturday but will send you a note Sunday or Monday.

    In the meantime I send you healing jujus, and strength.

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  11. #56
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    Default Re: Pred Uglies

    Hey Marta


    So happy to see your out having fun and enjoying life ! I've been to a place here in Surrey where you can see movies under the stars and it was fantastic and so much fun. I am so sorry to hear about your father hope he is doing better, please keep me posted
    Yes, please do get me her name I would appreciate it very much. I saw my Rheumy yesterday and told her how when I get MTX my get SOB and I'm sounding like a seal when I cough, but she really didn't say a word. Just listen to my lungs and said keep taking the meds and see you at the end of December. She is going on holiday for 5 weeks and no one to cover for her. I asked who do I see if things are not going well, she said to go to my family doctor. So her receptionist didn't have an openings in December so I will see her again at the end of January. I asked if blood work comes back wacky what do I do, oh stop MTX and wait till I see you. Yes, I would like to see another Dr. but then who will give me the referral to go see a new dr, lol. My family doctor has been trying for weeks now to get me in to see a Dr. Natasha Dehghan in Vancouver, but this doctor wanted a copy of my CT Scan of my lungs which my family dr didn't have or couldn't seem to get a hold of it, so I found out two or three weeks after she made the referral. So I came home and faxed it to her office (which she asked me too) I called the next day and they said they didn't get it yet, so I then emailed it to them. Called them two days later and they still can't find the fax or the e-mail ..ok something is wrong, so I drove over there and gave them a copy on Monday of this week.
    Anyways, again I am so happy to hear from you please keep me posted about your Dad, hope things get better. Hug to you

    Happy belated Birthday Hana
    Marta;112302]Hey Sue,

    I'm seeing my doc on Friday and I'll ask her to tell me the name of a doc she highly recommended in Vancouver. I went to see 'Symphony Under The Stars' at the Fairmont Jasper Park Lodge and ran into her (my doc) at the concert. We actually spoke about you and she told me about this new lady in Vancouver and told me the name but I was having so much fun that I forgot it when I got home. Then I had Hana's surprise Birthday Party and immediately to Edmonton for my daddy who was in ICU while we were dressed in zombie outfits for Hana's b-day. I'm in the city right now because my daddy is in the hospital with congestive heart failure, so I'm near her. When I see her I'll ask again for her name but man she was highly recommended. Every doc, my doc has recommended has been truly amazing. I'll let you know after Friday. I'm going to a funeral on Saturday but will send you a note Sunday or Monday.

    In the meantime I send you healing jujus, and strength.[/QUOTE]

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  13. #57
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    Default Re: Pred Uglies

    Love this poster you made ...I keep looking at it as my face is not getting puffy and the weight is coming on ..but hey nothing I can do but go with the flow.

    Quote Originally Posted by marta View Post
    I just wanted you to see that the pred uglies that we all hate so very very much, always go away.

    The first time was shocking.
    I never thought they would go away.
    Couldn't imagine that I would see my old self again.
    I did.

    The second time, I decided to document the process.
    Here it is.

    Attachment 2625

    Always love yourself, and never ever listen to those voices in your head that are triggered by looking in the mirror.
    You will be you again. This I promise.

  14. #58
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    Default Re: Pred Uglies

    Thanks, Martha.

    What are those symptoms when you are in the 10mg-5mg range?

    Thanks,

    Ed.

  15. #59
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    Default Re: Pred Uglies

    Hi Ed

    Not sure if your asking me or Martha

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