so..what happens next?
Well, it has been 4 months since my DM diagnosis. I am definitely better now than I was then but am still having some issues and just wondering what happens next.
We have tried to ween me off the Prednisone completely but everytime we get below 5 mg, I seem to relapse. More fatigue, my rash gets worse, etc... I feel like I would probably be better with a higher dose than 5 mg but I just want to take as little as possible. The majority of my muslce pain seems to be gone (I had quite a bit of pain in my upper arms and thighs previously) which is certainly nice. I definitely have a lot of weakness though and would like to work on building up some muscle mass again. I also do an injection of 15 mg of Methotrexate once a week but really just started this again after my gallbladder removal about a month ago now and I know this takes several months to build up in your system.
My main issues today are these: persistent rash across the bridge of my nose and under my eyes (well, more like bruising under my eyes), redness across my knuckles and cuticles of my fingers, hair loss (I have to wear my hair back in a ponytail all the time now because my hair is CONSTANTLY falling out), stomach pain & bloating, weight loss, fatigue, and some residual muscle pain. My gallbladder removal has at least allowed me to start eating again but I continue to have stomach pain and bloating and also some pain in my upper right side. Not like before my gb was removed thats for sure but some of the pain remains. I do slowly seem to be putting some weight back on but everyone comments on how skinny I am when they see me.
I know that compared to a lot of other people wth PM/DM, I am pretty well off. I am hoping to go back to work part time soon (if I can find a job). I think it will be good for me to get out and do something again bu then thats another question I have. Do I disclose my illness to a potential employer and have them risk not wanting to hire me or do I just be upfront about all of it? My inclination is to just be upfront because I think thats best but I also dont want to scare potential employers off either.
Here's to hoping for a happy and HEALTHY New Years for us all! :)
We have tried to ween me off the Prednisone completely but everytime we get below 5 mg, I seem to relapse. More fatigue, my rash gets worse, etc... I feel like I would probably be better with a higher dose than 5 mg but I just want to take as little as possible. The majority of my muslce pain seems to be gone (I had quite a bit of pain in my upper arms and thighs previously) which is certainly nice. I definitely have a lot of weakness though and would like to work on building up some muscle mass again. I also do an injection of 15 mg of Methotrexate once a week but really just started this again after my gallbladder removal about a month ago now and I know this takes several months to build up in your system.
My main issues today are these: persistent rash across the bridge of my nose and under my eyes (well, more like bruising under my eyes), redness across my knuckles and cuticles of my fingers, hair loss (I have to wear my hair back in a ponytail all the time now because my hair is CONSTANTLY falling out), stomach pain & bloating, weight loss, fatigue, and some residual muscle pain. My gallbladder removal has at least allowed me to start eating again but I continue to have stomach pain and bloating and also some pain in my upper right side. Not like before my gb was removed thats for sure but some of the pain remains. I do slowly seem to be putting some weight back on but everyone comments on how skinny I am when they see me.
I know that compared to a lot of other people wth PM/DM, I am pretty well off. I am hoping to go back to work part time soon (if I can find a job). I think it will be good for me to get out and do something again bu then thats another question I have. Do I disclose my illness to a potential employer and have them risk not wanting to hire me or do I just be upfront about all of it? My inclination is to just be upfront because I think thats best but I also dont want to scare potential employers off either.
Here's to hoping for a happy and HEALTHY New Years for us all! :)
Replies
Hi Angie - glad to hear you are doing better and Happy New Year to you!
It seems like 5 mg is hard to taper...I was on the every other day schedule tapering 1 mg a month. Everyone is different..but I noticed feeling some of the aches from before and it takes time for your body to adjust. It will be a tweaking process..either timing or dose wise.
Regarding whether to tell an employer or not, I would say it upfront - then you won\'t be tiring yourself out trying to keep up, etc. I would hate to go in and find I\'m really fatiqued, etc. and then tell them, I would think it would become a trust issue then. I would point out what your strengths are and how it would benefit them (I used to do some volunteer career counseling !).
Hope that helps
Ann
Angie I am so glad to read your entry, you sound much better than you were. I know it\'s hard to see the progress when we are in it daily, but if you think about how you were 4 months ago it\'s amazing. My experience is similar but it\'s been 6 months for me. I am also at the 5 mg taper point and struggle with the last few. Give the mtx more time, it took me 12 weeks before I noticed it helped. Then after that they added plaquenil which helped so much with my gastro problems and my rash on my hands which sounds exactly like yours. Each day is a little different, I have good periods then a little set back, but it\'s nothing like it was 6 months ago when I could barely shower or get dressed and zipper my pants . Celebrate the progress and what we can do. Regarding telling a new employer that you have this condition I think it\'s smart to be up front, but I wouldn\'t make a big deal about it, I would be matter of fact and talk about what skills you have to offer them. I think they will appreciate your honesty. Good luck dear friend and happy new year to you!
Maruska