I'm so tired of being on these high doses of steroids! 60 mg, inter muscular in the am and 12 hours later (evening thus insomnia). And I give them to myself. I've been on these doses for 8 weeks. I can't even find myself in the mirror because I'm so swollen. Moon faced. Hairy. Triple chinned. Eyes swollen. Oh let's not even get to the sweating and the mood swings. Ugh. And every time, EVERY time I try to lower the dose .5 mg, I'm in the ER with internal bleeding from degos needing emergency blood infusions (hence the picc line) and skin missing on my hands... Then. I did 4 infusions of rituxin. And now.... we wait up to 3 months to see if anything works. Until then, IM medrol.
***Ok end rant***
Sigh all I can say is hang in there and prayers that your treatment is successful in getting this under control.
You are very strong !! I would rant also and have for a lot less. I am sending you love and support !! :) <3
Thank you guys. I’m feeling better today. Thank god for the opportunity to rest until 3 (kid is at daycare). I plan on eating some sugar free frozen yogurt and taking a nap with fluffy pillows. <3 you lupies
I read your post and felt ashamed. I had a day like that just last week because the doctor had raised my (oral) prednisone up to 30 mg./day. I can relate to you because I do have the moon face, neck the size of a football player and the bloated feeling all around. I feel out of sorts, as if an alien is living inside of me, but with all of this..... NOTHING like what you are going through. BE gentle with self... very gentle and embrace every side effect telling yourself that it means the drug is working to heal you. Use guided imagery with positive thoughts towards the meds. I know this is very hard... I am trying to do this myself and think that my body will do better in accepting the meds. God bless you and my prayers are with you.
I am praying for you, Jen and Mimi, and all others going through all this. I am so lucky that I don't have to do that yet. I was on 40mg a few days then weaned back down but I am a lucky one in the fact that I so far don't have mood problems with it. I am wishing you the very best and gentle hugs.
Thank you for your support. I really appreciate it.
reet said:
I am praying for you, Jen and Mimi, and all others going through all this. I am so lucky that I don't have to do that yet. I was on 40mg a few days then weaned back down but I am a lucky one in the fact that I so far don't have mood problems with it. I am wishing you the very best and gentle hugs.
Now I’m in the ER with internal bleeding. I feel l
Like it never ends.
Oh Jen, I am so sorry. I am praying for you. Hugs!
Jen, hope you get some help. I will be praying for you. Hugs, Mary Beth