Question:
As I sit here in tears wondering why things just WONT go my way I decided to turn to all of you for a little support! I hope you dont mind me venting a little. I had a derm appointment today and I was so excited about going because today was suppose to be the day where I would start to tapper of the DREADFUL Prednisone. I have been on it for over a month and I am SO ready to be off it. Prednisone is the only medicine I am on as my derm has taken me off of MTX (which I wanted) and off of Enbrel. I loved Enbrel and really thought it was the one for me until it stopped working.. So I no longer am on that either. So to say the my psoriasis is wonderful is a horrible LIE... My P is out of control. It has ATTACKED my face to wear make up will not cover the horrible looking red all over my face.. I look in the mirror and immedietly I am in tears. The person I see looking back at me doesnt even look like a person. I dont feel "normal" and I am back to the way I use to be, as in When I go out I am ALWAYS looking down so I dont feel like people are looking at me like I am some kind of FREAK! In fact I dont even want to leave my house. Not only is it my face. Its my neck, my scalp, my arms, my legs, my back, and everywhere else. It is spring time and the temps here are beautiful. So not only when i go out do i walk with my head down... I must look like a freak always wearing a turtle neck. I have NO self confidence right now. So finally I got in to seeing my derm knowing that I was to start cyclosporine because I had all my blood work done. When the doctor came in and saw me the first thing he said is there is NO WAY he is taking me off Prednisone and in fact he is upping my dose. From 10 mgs a day to 40 mgs a day. I told him no and he wasnt having it. He scared me with that he says would happen to me if I were to go off it right now so I guess I have to listen to him. I dont want to take it though. I am so tired of things not working for me and I just feel so ugly that instead of POSIONING my body with all this medication Im almost at the point where I am just going to give up on all these treatments. I dont know what to do anymore.. I hate the way this med makes me feel and Im worried about all the side effects that go with cyclosporine.. I am so grateful to have Rob who knows what I am going through on a daily basis and understands. I am so grateful to all of you too... Thank you for letting me vent.. and if anyone has any advice it would be so greatly appreciated..
hi katie,
im so sorry of what you go through. i wish i could say the right thing that would help you get through it. but all i can say is i hope you find some thing that will work for you. i wish you the best and i pray you find some thing that works. im glad you have rob who under stands.
Rich I just have to tell you how wonderful you are... I know I can always count on you to make me smile... your a great friend. thank you
what I would like to write I won't.....
but why don't you find another derm....I know you have been to several already....... but this is your life and I've heard some nasty things with prednisone. You told your doctor No! this has to be a two way proposition...you are uncomfortable with the medicine (and rightly so) he knows more than both of us....but is he listening to you as "a person scared?" (plus wants to up the meds?)
If it were me....I would ditch the doc and find some one with compassion..I don't suppose this is what you or anyone else wants to hear....but you asked!
Of course you have to continue with what he has prescribed or we know what will happen....but can't you go to a teaching hosptital?
but can't you go to a teaching hosptital?
First place I'd go Sally...
And as far as the 2nd opinion goes thats what they're there for. You get two or more different docs saying the same thing and it will affirm your need for the treatment prescribed.
My mom was on prednisone and in my opinion it's an evil drug too. Fixed her problem but it whacked her out big time. Collitis.
Katie,
I probably wouldn't have responded to this except for my visit to a seminar in Dallas recently. The main doctor speaker is so well known and I wish I could name off all of his credentials right now but just know that he does work within a teaching hospital at Baylor. I have never seen or heard a person so emphatic on Cyclosporine being his drug of choice to get some one under control. I was afraid of it last year and chose to go back on MTX to get me under control but after listening to him I would use it if warranted.
I do not like Prednisone either and certainly would not want MORE but hoped that the derm would wean me off of it gradually. Like Sally said, can't you go to a teaching hospital. You ask for opinions...yes I am opinionated...I would go to a different derm as you don't like what this one is saying. I wish the best for you.
Juanita
Boy Katie I sure hate what this disease does to you. I know you and you are a beautiful person no matter what the condition your skin is in.
I would try and stick with what the doc says to do right now but do try to get him to taper you off the prednisone once you are stable. I am sure you have communicated to him how your psoriasis makes you feel but if you haven't done so please remind him.
Remember we are always here for you.
xoxo
Marie
Katie, I feel so bad for you. It's like nothing you do works. That has been my story, too.
If you decide to get off Prednisone--DO NO STOP IT SUDDENLY-you have to taper off,,,very gradually.
I pray that your next treatment will work. After 41 years I started MTX in Jan. So far, it is helping-slowly and my blood work has been good.
Thank you all for your support.. Sally, Brad and Juanita... Unfortunatly this is a teaching hospital and there were a couple doctors that I have seen there and they all agreeed that this was the way to go. It was hard that I had to find a new derm because mind left her practice and wouldnt take me as a patient at her new one because I dont have insurance. These derms that I am going to now are suppose to be the best in the state. I thought they would be great since they are a teaching hospital but I dont know anymore. Prednisone is no doubt an evil drug and I wished I never started it but at the time of my allergic reaction there was no option for me at the moment and I had been "pumped"with such a high dose that the only option was to keep me on it and then try to tapper me down. This was a over a month ago and the tappering down process has been the worst. I just dont know which way to turn anymore... but I thank you ALL for your support and suggestions. I really appreciate them frothe bottom of my heart!
Marie... thank you for your kind words.. they mean so much!
Granny... thank you so much for your prayer.. Its hard that for some of us it is hard to find relief and sometimes things work for some and then dont work for you. I am glad that MTX is working with you. When I was on it, it didnt change my P at all. I hope it continues to work well for you. Thank you again for your support
Katie-
I feel so bad for what you are going through. I wish I had a magic bullet to take it all away. I am glad you have Rob to help you through this. We will all be here to help you get through this too.
All the best,
Steve
awww Steve thanks so much!!!!
My P is sooooo HOT tonight and BRIGHT Red I dont know what that means but its HURTS!!!!
Inflammation
Katie,
Sorry to hear about all of this stuff going on. Geesh, you just can't seem to catch a break. I know how much you hate prednisone and I can relate, I'm not a big fan either. When taken properly it can be so very helpful and soon you will be able to wean off of it, a month is not a long time.
I'm sure that the derm unit at the teaching hospital has dealt with this before. That said, your not married to any treatment. If for some reason cyclosporin doesn't agree with you, contact your derm, and step off of it.
Try to take it one day at a time....I know easier said than done.
I'm here for you, call me. We can do our prednisone at the same time :( and maybe it won't be so bad....
Have patience and have faith.
See you very soon.
XO's
Karen
I know, pretty much everyone has said the same thing, but there is hope. I too have been on prednisone, and I hated it too !! That was years ago, and yes, when I tapered too quickly, it got worse. Please stick to the Dr's plan, it may not seem best at the moment, but when they up your dose of this drug, they are doing it to get you relief. Prednisone acted quite fast when they had upped my dose, so hopefully it will do the same for you. BUT..... Please make sure that when they take you off of it, they have a back up plan, as it will flare(at least it did with me). Please remember that this is just a temporary fix until you get better.
You are in my thoughts !!
I have lived with this disease since age 5, and I will be 32 this July. It is a learning leson to be able to deal with the public, but please know that it does get easier to deal with. Keep in mind that even know other people around you in public may not know P, but you do, and you know it is not "catchy"(as many have said in my past) After all these years I too sometimes have a hard time with public places, but after all, you need to live your life so don't let others get in the way of that. You are doing nothing wrong !!!
Please keep your chin up !! ;) Your friends, and supporters are here for you no matter what !
Later~
Hang in there, Katie. You're definitely due for a break! ;)
1 Attachment(s) Thinking about you and praying you will get better soon!
1 Attachment(s) Katie, I'm so so sorry that you are still going through all this.
I really don't know what to tell you re. all this cause I'm unable to take anything internally, all I've got to try are topicals and UVB treatments and now my body seems to reject the UVB treatments, Grrrrr. However, I'm keeping you in my thoughts & prayers to find something that will help you.
Thank God for having Robi by your side.....
Helen
Katie,
I'm so sorry you are having such a rough time. I know how you feel with the prednoise, as I'm still on it right now too, and am trying to be tapered off of it slowly. I know we just have to be patient and let it do what it's suppose to do, but patience is hard to come by sometimes. Try to hang in there and keep us posted, we'll have to all get together and try to see how we all are doing with our prednoise. Take care.
Sandy
Hang in there Katie! Like Kim said, it sounds like your break should be finally coming up soon...
1 Attachment(s) Katie, I'm so so sorry that you are still going through all this.
I really don't know what to tell you re. all this cause I'm unable to take anything internally, all I've got to try are topicals and UVB treatments and now my body seems to reject the UVB treatments, Grrrrr. However, I'm keeping you in my thoughts & prayers to find something that will help you.
Thank God for having Robi by your side.....
Helen
Get well soon Katie!
xoxo
Denise
Helen it's Rob not Robi LOL although i'm sure Robi would be by her side in a second, we are a supportive bunch!
Thanks to all of you sooo very much for your support... its a bit overwhelming all the support yall have given me and I appreciate it from the heart!!! Today My P is less red and inflammed Im sure due to Prednisone but my PA is out of control.. I think part of it is because of the rain... Tomorrow Karen (ouchyK) and I are meeting up at the casino because she is SO wonderful and knows that I need her right now!!! We are going to take our Prednisone together!!!!! So it should take my mind off of things for a few hours!!!! I just wanted to thank you ALL again for the wonderful, heartfelt support you gave me.. I am so grateful to have all of you!!!!!!
hi katie and karen,
i hope you had fun today. i wish you all the best.
have a good night all
richard
1 Attachment(s) Helen it's Rob not Robi LOL although i'm sure Robi would be by her side in a second, we are a supportive bunch! = A quote from Denise.......
-------------------------
Sorry Katie & Denise for putting Robi in the place of Rob; however, like you said Denise, Robi probably would be by her side in a minute if Rob doen't clobber him, JK LOL.... We definitely are a supportive group!!!
No problem Helen.... thanks again for the support!!!! same with everyone else who has been so wonderful to me
I had a great time spending the day with Karen... It was much needed and although my body is soooo sore... I had alot of fun... It feels really good to spend time with someone who knows what you are go through and who understands.... I am feeling a little better today... although I hate taking Prednisone it really does help but im not looking foward to coming off it because of the flare..... well see how things go.. but I just wanted to tell yall again how much I appreciate all of the support!!! Hope everyone is doing well....
Answers:
hi katie,
im so sorry of what you go through. i wish i could say the right thing that would help you get through it. but all i can say is i hope you find some thing that will work for you. i wish you the best and i pray you find some thing that works. im glad you have rob who under stands.
Answers:
Rich I just have to tell you how wonderful you are... I know I can always count on you to make me smile... your a great friend. thank you
Answers:
what I would like to write I won't.....
but why don't you find another derm....I know you have been to several already....... but this is your life and I've heard some nasty things with prednisone. You told your doctor No! this has to be a two way proposition...you are uncomfortable with the medicine (and rightly so) he knows more than both of us....but is he listening to you as "a person scared?" (plus wants to up the meds?)
If it were me....I would ditch the doc and find some one with compassion..I don't suppose this is what you or anyone else wants to hear....but you asked!
Of course you have to continue with what he has prescribed or we know what will happen....but can't you go to a teaching hosptital?
Answers:
but can't you go to a teaching hosptital?
First place I'd go Sally...
And as far as the 2nd opinion goes thats what they're there for. You get two or more different docs saying the same thing and it will affirm your need for the treatment prescribed.
My mom was on prednisone and in my opinion it's an evil drug too. Fixed her problem but it whacked her out big time. Collitis.
Answers:
Katie,
I probably wouldn't have responded to this except for my visit to a seminar in Dallas recently. The main doctor speaker is so well known and I wish I could name off all of his credentials right now but just know that he does work within a teaching hospital at Baylor. I have never seen or heard a person so emphatic on Cyclosporine being his drug of choice to get some one under control. I was afraid of it last year and chose to go back on MTX to get me under control but after listening to him I would use it if warranted.
I do not like Prednisone either and certainly would not want MORE but hoped that the derm would wean me off of it gradually. Like Sally said, can't you go to a teaching hospital. You ask for opinions...yes I am opinionated...I would go to a different derm as you don't like what this one is saying. I wish the best for you.
Juanita
Answers:
Boy Katie I sure hate what this disease does to you. I know you and you are a beautiful person no matter what the condition your skin is in.
I would try and stick with what the doc says to do right now but do try to get him to taper you off the prednisone once you are stable. I am sure you have communicated to him how your psoriasis makes you feel but if you haven't done so please remind him.
Remember we are always here for you.
xoxo
Marie
Answers:
Katie, I feel so bad for you. It's like nothing you do works. That has been my story, too.
If you decide to get off Prednisone--DO NO STOP IT SUDDENLY-you have to taper off,,,very gradually.
I pray that your next treatment will work. After 41 years I started MTX in Jan. So far, it is helping-slowly and my blood work has been good.
Answers:
Thank you all for your support.. Sally, Brad and Juanita... Unfortunatly this is a teaching hospital and there were a couple doctors that I have seen there and they all agreeed that this was the way to go. It was hard that I had to find a new derm because mind left her practice and wouldnt take me as a patient at her new one because I dont have insurance. These derms that I am going to now are suppose to be the best in the state. I thought they would be great since they are a teaching hospital but I dont know anymore. Prednisone is no doubt an evil drug and I wished I never started it but at the time of my allergic reaction there was no option for me at the moment and I had been "pumped"with such a high dose that the only option was to keep me on it and then try to tapper me down. This was a over a month ago and the tappering down process has been the worst. I just dont know which way to turn anymore... but I thank you ALL for your support and suggestions. I really appreciate them frothe bottom of my heart!
Marie... thank you for your kind words.. they mean so much!
Granny... thank you so much for your prayer.. Its hard that for some of us it is hard to find relief and sometimes things work for some and then dont work for you. I am glad that MTX is working with you. When I was on it, it didnt change my P at all. I hope it continues to work well for you. Thank you again for your support
Answers:
Katie-
I feel so bad for what you are going through. I wish I had a magic bullet to take it all away. I am glad you have Rob to help you through this. We will all be here to help you get through this too.
All the best,
Steve
Answers:
awww Steve thanks so much!!!!
My P is sooooo HOT tonight and BRIGHT Red I dont know what that means but its HURTS!!!!
Answers:
Inflammation
Answers:
Katie,
Sorry to hear about all of this stuff going on. Geesh, you just can't seem to catch a break. I know how much you hate prednisone and I can relate, I'm not a big fan either. When taken properly it can be so very helpful and soon you will be able to wean off of it, a month is not a long time.
I'm sure that the derm unit at the teaching hospital has dealt with this before. That said, your not married to any treatment. If for some reason cyclosporin doesn't agree with you, contact your derm, and step off of it.
Try to take it one day at a time....I know easier said than done.
I'm here for you, call me. We can do our prednisone at the same time :( and maybe it won't be so bad....
Have patience and have faith.
See you very soon.
XO's
Karen
Answers:
I know, pretty much everyone has said the same thing, but there is hope. I too have been on prednisone, and I hated it too !! That was years ago, and yes, when I tapered too quickly, it got worse. Please stick to the Dr's plan, it may not seem best at the moment, but when they up your dose of this drug, they are doing it to get you relief. Prednisone acted quite fast when they had upped my dose, so hopefully it will do the same for you. BUT..... Please make sure that when they take you off of it, they have a back up plan, as it will flare(at least it did with me). Please remember that this is just a temporary fix until you get better.
You are in my thoughts !!
I have lived with this disease since age 5, and I will be 32 this July. It is a learning leson to be able to deal with the public, but please know that it does get easier to deal with. Keep in mind that even know other people around you in public may not know P, but you do, and you know it is not "catchy"(as many have said in my past) After all these years I too sometimes have a hard time with public places, but after all, you need to live your life so don't let others get in the way of that. You are doing nothing wrong !!!
Please keep your chin up !! ;) Your friends, and supporters are here for you no matter what !
Later~
Answers:
Hang in there, Katie. You're definitely due for a break! ;)
Answers:
1 Attachment(s) Thinking about you and praying you will get better soon!
Answers:
1 Attachment(s) Katie, I'm so so sorry that you are still going through all this.
I really don't know what to tell you re. all this cause I'm unable to take anything internally, all I've got to try are topicals and UVB treatments and now my body seems to reject the UVB treatments, Grrrrr. However, I'm keeping you in my thoughts & prayers to find something that will help you.
Thank God for having Robi by your side.....
Helen
Answers:
Katie,
I'm so sorry you are having such a rough time. I know how you feel with the prednoise, as I'm still on it right now too, and am trying to be tapered off of it slowly. I know we just have to be patient and let it do what it's suppose to do, but patience is hard to come by sometimes. Try to hang in there and keep us posted, we'll have to all get together and try to see how we all are doing with our prednoise. Take care.
Sandy
Answers:
Hang in there Katie! Like Kim said, it sounds like your break should be finally coming up soon...
Answers:
1 Attachment(s) Katie, I'm so so sorry that you are still going through all this.
I really don't know what to tell you re. all this cause I'm unable to take anything internally, all I've got to try are topicals and UVB treatments and now my body seems to reject the UVB treatments, Grrrrr. However, I'm keeping you in my thoughts & prayers to find something that will help you.
Thank God for having Robi by your side.....
Helen
Get well soon Katie!
xoxo
Denise
Helen it's Rob not Robi LOL although i'm sure Robi would be by her side in a second, we are a supportive bunch!
Answers:
Thanks to all of you sooo very much for your support... its a bit overwhelming all the support yall have given me and I appreciate it from the heart!!! Today My P is less red and inflammed Im sure due to Prednisone but my PA is out of control.. I think part of it is because of the rain... Tomorrow Karen (ouchyK) and I are meeting up at the casino because she is SO wonderful and knows that I need her right now!!! We are going to take our Prednisone together!!!!! So it should take my mind off of things for a few hours!!!! I just wanted to thank you ALL again for the wonderful, heartfelt support you gave me.. I am so grateful to have all of you!!!!!!
Answers:
hi katie and karen,
i hope you had fun today. i wish you all the best.
have a good night all
richard
Answers:
1 Attachment(s) Helen it's Rob not Robi LOL although i'm sure Robi would be by her side in a second, we are a supportive bunch! = A quote from Denise.......
-------------------------
Sorry Katie & Denise for putting Robi in the place of Rob; however, like you said Denise, Robi probably would be by her side in a minute if Rob doen't clobber him, JK LOL.... We definitely are a supportive group!!!
Answers:
No problem Helen.... thanks again for the support!!!! same with everyone else who has been so wonderful to me
I had a great time spending the day with Karen... It was much needed and although my body is soooo sore... I had alot of fun... It feels really good to spend time with someone who knows what you are go through and who understands.... I am feeling a little better today... although I hate taking Prednisone it really does help but im not looking foward to coming off it because of the flare..... well see how things go.. but I just wanted to tell yall again how much I appreciate all of the support!!! Hope everyone is doing well....
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