I am sorry but I need to rant a bit. My Lupus has been in an active state since diagnosis. I am on plaquinil, pred, nifedipine, stomach meds and have been on benlysta, immuran in the past and recently methotrexate.
The pred and methotrexate combo gave me some of my quality of like back that I have not had for a few years. Yesterday my specialist said it is not working well enough and I need more pred and to switch to cellcept. The doc to a pic of my feet to show others what a bad case of vasculitis looks like!
I AM TIRED OF NEW MEDS WITH NEW SIDE EFFECTS and waiting for them to work only to find 6 month later that they don't and I get to start all over. I HATE PRED- I told the doctor they should list frequent outbursts and fighting with your spouse as side effects LOL! I don't know if there are other meds to try.
I am very afraid that nothing will ever get this under control. I am afraid that I will loose my job. I am afraid that I will loose my toes and loose more mobility and be unable to care for my daughter.
I need to be positive, to believe I can make it through this and that everything will be ok but on days like this I just can't and no one, not my husband, sister or anyone understands. I have to stop typing - my fingers are numb.
Having Lupus is crap isn’t it? I’ve been on plaquenil for a number of years now , but it took about 2 years before I saw any improvement - but it made a big difference for me. I’m feeling for you with the new meds!
You are certainly not alone in your need to rant and feeling frustrated! We all have our times, and the fears can be overwhelming. I think all we can do sometimes, is just not give up! I know for me I just have to take one thing at a time, it might be a very small thing, but that's okay. Hugs your way!
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I agree with all above I was just placed on Cellcept. I have Lupus, Sojgrens , Connective Tissue disease and I was just told I have Scleroderma. I was on Methotrexate and prednisone for years. Now I take imuran and prednisone and cellcept.
I was in the hospital from 12-18-13 thru 1-24-14. That's how bad my flare was. I'm starting to wonder how good some of there drugs are myself. I'm also trying for disability. I'm at home now with O2 3L/NC and on TPN. I'm on short term disability at the moment. I'm so nervous over this disability its not helping my flares.
Hello, sorry that you are going through this stag! Hope that things get better soon for you! Also i , myself, find it hard at times finding myself feeling good and pain free for a day or two , then here comes someone to remind me that reality is back . Ha! How that happen so quickly, i really don't have a clue, exspecially when they know that there are more bad days than good ones. so, YES i can relate with you - about family, but we try soooooooooooooooooooo hard not to go into a flare with the STRESS that they try to put on us - to go back to a bad day on a GOOD DAY . Some people you ( well me i try so hard to avoid them) , but they live with me -smile /LOL It's impossible a lot of the time !!! Oh!!!! am sorry i was suppose to lift you up in spirits and got caught up thinking of myself venting (am sorry), Ha! silly me. Back to you , i have found that for the 3 years that i have been on the first two meds that you named , have been part of my LIFE and has done so well for me . Sometimes on a bad day if i forget to take them, i can feel very out of order , and i never have had a side affect from them. Did i say that i have been taking them for 3 years ? Yes 3 , with no side affects to this day ( Saturday15, 2014) , different strokes for different folks, is what granny use to say all the time. I hope that you and your doctor find a med that will help you and limit some of which you are on prayers go out to you...Beverly L.