I'm so sorry you are suffering. Gosh I had high hopes the benlysta would do wonders for you. I wish I could take it all away for you.
Sorry im just answering you but my life has been crazy and trying to cope with everything. To answer your question im not sure if the benlysta is working or not at first i thought it was making me worst (lots of headaches, lots of body pain, just feeling like crap) had to increase my steroid useage and now i dropped it down to 10mg per day but i think i need to go back up ,im in pain as i type this, i already took 2 flexeril and 2 dilaudid and still in pain couldnt get my 4th dose of benlysta due to an infection. just had bloodwork as long as that is clear i can schedule my next treatment.how have u been ,lots of hugs n well wishes. slim
Oh Slim I hate to hear how sick you feel. Gosh I know you hoped in this drug being the answer. Do they think it will take some time? Gosh you poor thing. I just said a prayer for you dear. Try not to lose hope.
Sorry im just responding to your message but since my last treatment i have been feeling like crap to put it nicely and i am usually so tired i cant function. Sorry to hear about you daughter,how is she doing? Thanks for the support, i really needed it with the new syptoms ,it can get overwhelming. I need to post about the 3rd benlysta tx but that wont be till later today, when my head is clear. Hugs slim
Hi Slim so glad third has come. just lifted prayer up for you. Biopsy was awful but I now wait two weeks for results. ugh This gets old fast.
Morning Tammy, got your message and yes that uterus needs to go, I have friends that have had this issue and its not worth it. They would be in such pain and bleed so heavily that it had to come out. It sucks that your fourth was in the ER. How did the biopsy go? I had my third Benlysta yesterday and it went well, hopefully i start seeing a difference soon . I am tired as hrch, so im going back to bed. Have a great day. hugs slim
Hello dear girl. Yes I am a mess too. Many of us are. Wednesday I pray the specialist does a biopsy and I can soon get this uterus OUT! The pain and stress triggers everything else.
Boy raspy voice and runny nose sounds like you picked something up in your weakened state. So very sorry. Let's see I spent my fouth in the ER. Lol and then came home and slept. Terrific haugh? Misery does love company.
I am off to bed now. I am pooped. I hope you don't get too terribly sick. Take lots of C with that iron. Very important I'm sure you know. (((hugs)) Tammy
I hear you on the road being tough, its like it never ends. Im tired but i cant sleep, i have this raspy voice and a runny nose except i dont have a cold. im going back on the iron pill since my rbc and hemoglobin are low ,which should help with the fatigue. how have you been feeling? what did you do for the fourth of July? I stayed home and my hubby n the kids lit up fireworks in the backyard. hugs slim
Oh Slim I'm so sorry you are in such bad shape. Slim I had a lymph node under my ARM swell to 6 cm in 4 days time. It was horrible.
I'm so very sorry you are in such pain and not sleeping to boot. Ugh this road sure is rough right now for many of us.
reading your message and i have a hard time sleeping also and that just wears you down. i use to take sleeping pills and i think im going to start taking them again. all these meds keep me wired and even though my hemoglobin n rbc are low and im tired i still cant sleep. my next treatment is on wednesday and i dont see an improvement yet, still in pain , flaring up. On thursday had an excrucaiting pain underneath my left shoulder blade causing pain to the left side of my eye n jaw, spreading to the right side ,in tears n cant take a deep breath due to pain, lasted for15-20min. friday went to hspt. since i was dizzy. cat scan showed a nodule on the right lung, hspt not sure what the nodule is or what happened. thanks for checking on me. ask ur dr. for sleeping med or drink chamomille tea. hugs slim