Question:
:confused: As many of you know I have recently gone through a very scary reaction to Enbrel and after talking with my doctor last week . They decided to STOP Enbrel FOREVER :( I dont like that but for now I guess I will deal with it... I wanted to just try the single dose to see if I would have the same reaction but they dont want to do it.. I feel like I am back at square one.. Coming off of the high dose of prendisone I am starting to FLARE big time.... even noticing patches of P that have NEVER been there before and it scares me! My PA isnt doing well today either but I kind of expected these types of things to happen once I was off the Steriod. I am on MTX which I absolutly HATE and when I go back to the doctor on Wed I am telling them to GET me OFF it because It is not doing a thing for me... Never has and I doubt it ever will!!! Besides the physical affects of what I have been going through the emotional ones are starting to hit too... Depression for one.. I feel myself falling into a depression and I dont like it... I know I have so many people that care about me but I cant help but feel lousy when I look at my skin and see how i went from almost being clear to LOOKING like this again!! I havent cried about the way I look in so long but looking in the mirror this afternoon I couldnt help but cry... I dont feel like getting out of bed today and its almost 7 pm. I dont want to walk around my house in a tshirt because I dont feel like showing anyone my skin or hearing WHAT I SHOULD DO FOR IT!!! So once again im back in my long sleeves.. My UGLY skin is back in full force and I dont know what to do... I dont know where to even begin to look for what kind of treatment is next for me... I have failed Amevive, MTX and now Enbrel... Today I am cracking and bleeding and FLAKING. 2 weeks ago I was CLEAR... What did I do wrong???? WHY??? I hate this... I hate feeling like NOTHING out there is going to help me... Im going to end here because I have vented to you all long enough today....
Katie,
Sweetheart, I'm so glad you wrote your feelings as you did. I know it's not much for me to say in the way of helping but I feel by writing that out and sharing you are helping yourself and others. I'm teared up...mainly because I do understand ...and what better place to unleash those feelings than here. You didn't do anything wrong..it's this damn disease.. it has it's own crazy course no matter what we try to do to keep it under control. I am frustrated along with you and depressed for you and I cry with you.... but I also stand strong with you we have to do the best we can under the circumstances...even if the circumstances are poor. One day at a time sweet Katie.
Hang in there
Denise
Katie,
This is so sad, but it's not your fault. You were trying to help yourself. I only have pp on my soles and palms, but I get discouraged also. It's OK to cry and scream and be moody. Then you pick yourself up and keep going. It is hard but if you stop trying, you will never find something to help you.
I think some of these meds. do more harm that good. Prednisone is BAD news. I had the worst flare in 40 years with Embrel. I have had to start using a scooter to go shopping because I can't walk long enough without cracking, bleeding and hurting for 2 days. I have not been able to wear any shoes this summer. I wear terry cloth slippers where ever I go.
I have no idea as to suggest what med. you should try next. You will just have to think about it and talk to your derm. and make a decision. I am trying to make the same decision about mtx. Frankly, all the meds. scare me. I hope you find something soon that will help you.
Granny
Katie,
Now you know this is happenning to you for absolutely nothing you did but some back luck in the gene department.
I can understand why your doctor doesn't want to chance trying Enbrel again. Although you had been using it and didn't have a reaction such as the one you had that day. Had you taken any other meds that day that could have caused similar symptoms. Were you careful to withdraw the plunger to be sure you were not in a blood vessel?
There are several more options for you out you might want to give the mtx a little while longer while you work thru the flair of the prednisone rebound. Or you can discuss these different options with your derm ASAP. Have you tried Soriatane, Cyclosporine? Lots of people have had good results with Humira, Raptiva, Remicade.
Don't dispair. You will find something. I know you will!!!
XOXOXOOXOXOXOXO
Oh Katie - I was there not too long ago - terrible reaction to enbrel and awaiting a horrible flare from a not-so-savvy taper from prednisone. :( . I know you feel demoralized right now, but please don't get down on yourself. Like Annie said - you have nothing to do with your crappy genes. I know it's easy to forget when you feel so ill and uncomfortable, but please know that we are all here for you (and that you have Rob). Keep up the good fight, my friend. Be good to yourself.
I'll be thinking of you.
xo,
Krista
hi katie
i can't help much but i can say i love you as my freind. can't wait to meet you.
love richard
hey there katie, i agree with the others, i love ya, and we r hear for ya... im going the same way as you. i went off my cyclo, because of my blood pressure... and now im in a terrible flare of gluttete p its so awlful looking, so i do understand what u r goin thru... but we will get by this in time, just hang in there with me baby girl!!!! love ya,,,, julie
call me anytime!!!!!
Answers:
Katie,
Sweetheart, I'm so glad you wrote your feelings as you did. I know it's not much for me to say in the way of helping but I feel by writing that out and sharing you are helping yourself and others. I'm teared up...mainly because I do understand ...and what better place to unleash those feelings than here. You didn't do anything wrong..it's this damn disease.. it has it's own crazy course no matter what we try to do to keep it under control. I am frustrated along with you and depressed for you and I cry with you.... but I also stand strong with you we have to do the best we can under the circumstances...even if the circumstances are poor. One day at a time sweet Katie.
Hang in there
Denise
Answers:
Katie,
This is so sad, but it's not your fault. You were trying to help yourself. I only have pp on my soles and palms, but I get discouraged also. It's OK to cry and scream and be moody. Then you pick yourself up and keep going. It is hard but if you stop trying, you will never find something to help you.
I think some of these meds. do more harm that good. Prednisone is BAD news. I had the worst flare in 40 years with Embrel. I have had to start using a scooter to go shopping because I can't walk long enough without cracking, bleeding and hurting for 2 days. I have not been able to wear any shoes this summer. I wear terry cloth slippers where ever I go.
I have no idea as to suggest what med. you should try next. You will just have to think about it and talk to your derm. and make a decision. I am trying to make the same decision about mtx. Frankly, all the meds. scare me. I hope you find something soon that will help you.
Granny
Answers:
Katie,
Now you know this is happenning to you for absolutely nothing you did but some back luck in the gene department.
I can understand why your doctor doesn't want to chance trying Enbrel again. Although you had been using it and didn't have a reaction such as the one you had that day. Had you taken any other meds that day that could have caused similar symptoms. Were you careful to withdraw the plunger to be sure you were not in a blood vessel?
There are several more options for you out you might want to give the mtx a little while longer while you work thru the flair of the prednisone rebound. Or you can discuss these different options with your derm ASAP. Have you tried Soriatane, Cyclosporine? Lots of people have had good results with Humira, Raptiva, Remicade.
Don't dispair. You will find something. I know you will!!!
XOXOXOOXOXOXOXO
Answers:
Oh Katie - I was there not too long ago - terrible reaction to enbrel and awaiting a horrible flare from a not-so-savvy taper from prednisone. :( . I know you feel demoralized right now, but please don't get down on yourself. Like Annie said - you have nothing to do with your crappy genes. I know it's easy to forget when you feel so ill and uncomfortable, but please know that we are all here for you (and that you have Rob). Keep up the good fight, my friend. Be good to yourself.
I'll be thinking of you.
xo,
Krista
Answers:
hi katie
i can't help much but i can say i love you as my freind. can't wait to meet you.
love richard
Answers:
hey there katie, i agree with the others, i love ya, and we r hear for ya... im going the same way as you. i went off my cyclo, because of my blood pressure... and now im in a terrible flare of gluttete p its so awlful looking, so i do understand what u r goin thru... but we will get by this in time, just hang in there with me baby girl!!!! love ya,,,, julie
call me anytime!!!!!
1 2