I don’t know about the rest of you, but I’m truly exhausted after the holidays. I’m having a flare to the point where it even hurts to breathe or move. Since last night I’ve taken an additional 70mg of Prednisone and who knows how many Motrin for the pain. I’m on an inhaler, Prevacid, plaquenil, methotrexate, antidepressants, anti-anxiety medication, sleeping medication, and more. I’ve been checked out by some of the best rheumatologists in New York and Boston. They’re both holding out hope that an increase in methotrexate will help. But I’m at the end of my rope. I worry every day I’m going to end up in the hospital for organ failure from all the toxic meds I’m ingesting. I want to make changes in 2014, but despite my best efforts, I can’t do what I wish I could. I can hardly stand or walk and feel like I’m going to need a wheelchair soon. I can’t take it anymore! Help!! I have SLE, Sjögren’s, thyroid disease, fibromyalgia, and a bunch of other autoimmune issues, not to mention depression, anxiety and insomnia.
All I can say is vent all you want........venting does help to get rid of some of the stress........hang in there.......I will be praying for you.....
BLESSINGS and PRAYERS
Thank you. So few people outside of this site who don’t have lupus really get it. Even my husband, though supportive, has no idea what it would be like to walk in my shoes for a day. I’m fortunate to have found this site where people really do understand.
Kim, it really sounds like methotrexate isn’t working for you. Can your rheumy try something else? I have rheumatoid arthritis as well as lupus. None of the biomeds that suppress the immune cells worked for me, but the meds like Actemra and Orencia that block the inflammation signals in T cells did. However, these meds will jack your liver enzymes up greatly. I have to do liver monitoring every month. Good luck. I hope your flare ends soon.
I feel your pain. I’m in the same boat right now but can’t go back on prednisone because I’m fighting some kind of virus which means yet another trip to the doctor. The only drug that puts me completely in remission is cytoxan which my rheumy won’t rx because he’s worried about bladder cancer. Really frustrating. I want to tell him go break both knees and hips and shoulders then go about your day and get a clue on how I feel. Grrrrr Add to that the fact that I need to find a job I can do for $ reasons and I have 3 kids etc… And I’m losing my mind. I battle most of the same diseases as you. I have thyroid nodules, depression, fibro, lupus, sjogren’s, vasculitis and a few others. Hang in there and get better pain meds if you can. Gentle hugs, Annemarie
Thank you. I always appreciate the feedback. It’s so frustrating to want to feel better and to try so hard to do all the “right” things, and still feel miserable. I still put on a happy face, but I’m crying on the inside. I’m willing to do the work. Meaning, whatever it takes to feel better, diet, exercise, etc. But besides medication, nothing has yet seemed to have helped. Taking upwards of 100mg of prednisone plus all my other meds is just ridiculous. And I still feel like I’ve been hit by a truck!
Kim, Annemarie, and all the others....I am praying for you all. I don't have it this bad right now but my mind is blown at the meds you are on, Kim. My doctors made me wean off of 5mg of pred because of the danger to me. I am still walking but with a great deal of effort and pain. I am so sorry for all of you that are this bad. I wish I could give you all gentle hugs.
Thank u for gentle hugs!
Prayers for you. I feel your pain. I just got my diagnosis in November, but I have been sick since 2009. This has turned my whole life upside down... I got diagnosed with lupus, peripherial autonomic neuropathy, raynouds, tachycardia, and I go next week for A tilt table test, as my dr thinks I have POTS. Kim I have not bounced back from the holidays either. I had a stress fest yesterday, which took everything out of me and I am bed ridden today.