View Full Version : 6 mos on plaq and flaring badly
07-16-2012, 09:16 PM
Havent posted in a while because things were going good. Life was good, pain level was ok but as we all know, it never completely goes away and my lupus feels like it has come back with a vengeance. About a month ago my hair loss started to increase again. Before I was diagnosed I had huge bald patches above my temples and lost all my arm hair (which I didn't mind). Those are starting to come back again. Im getting horrible rashes on my chest and arms from the fluorescent lights at work. Then my joint pains have come on very severely. I get the burning, stabbing pains in my knees, hips, fingers... It almost feels like those lights on a Christmas Tree that twinkle in rhythm with a song. Alternating on my joints with aggression. I was in the ER on Saturday bc my back went out as well. They refused to give me a shot in my back and just loaded me with dilaudid instead. Saw my rheumy today and ive been on plaq 6 mos now and having probably the worst flare since diagnosis. Gave me some steroids and also said I have fibro too (of course). How long does one wait in pain to know if the medicine is not enough or not working? Weeks? months? I take plaq, lodine, oxycodone, and cymbalta. I hate these times. I just don't want to leave my bed. :(
What dose of steroids did they put you on? Sounds to me like the doctors are going to have to hit you hard with the meds to get you out of the flare and then ease you back down to maintence. (remember that I am not a doctor so I am not giving medical advice just what has happened in my experience). My docs usually up my steroids and/or my MTX to try and get me under control and then start to taper. If what he gave you isn't working I would call and let him know.
Im not going to lie, sometimes flares last a short time and sometimes a long time but if you have a good doctor he will do his best to make you comfortable
07-17-2012, 05:22 AM
Thanks tgal. They gave me the Titrating dose of prednisone.. 50mg for 5 days 40mg for 4 30mg for 3 and then he's actually keeping me on 20mg for a month. I've never done that before. Hopefully it will help. My rheumy is awesome.. He gets me in with emergency appts, he has imparted a lot of knowledge and taught me a lot about the disease but I'm beginning to think he may be overwhelmed with patients. He mentioned yesterday that I don't have a "severe" case of lupus because I don't have organ involvement, which I am grateful for but the pain however, is severe to me. Hes says im at the max for pain meds and i dont want more pills, i just want the pain managed. I'm thinking it may be time for a second opinion. I wasnt able to pick up my son for 2 days!
07-17-2012, 04:10 PM
My last flair (possible levaquin reaction for the trigger), which involved an ashmatic exacerbation, wasn't very pleasant, and went high-horsepower for several days, when I ended up in the ER. They gave a couple of steroid shots via the IV, and then I went home with (I think, but can't remember) 60-50-40-30 for 4 days each and started pulling out of it. Then we went to 20 for the last 6 weeks. I've been on plaq for what?? 4 weeks, and I'm now going 15-10-5 one week each on the pred and see what happens when I hit 5. It all started in the middle of April or so, and here we are in the middle of July, and I'm finally feeling halfway decent, with the energy level starting to come back up. The summer heat doesn't help things here...
Do you know what fired your flare up, E42brchick? Too much sun? Stress? Out of the blue? You say no organ involvement, but do you have asthma? Are you a "true" celiac, or maybe intolerant? Your intestines are an organ, and if lupus did it... Your Grave's, you're taking the iodine for it? Is it controlled? SLE usually it "kills" the thyroid (Hoshimoto's and otehrs) (btw, the endocrine system is organs). 'Course, you're dealin' with the ole "what came first, the chicken or the egg" question when trying to figure out what did what to you. Good rheumies are hard to come by, but a 2nd opinion wouldn't hurt (unless they biopsy... tic). |;^)
09-01-2012, 10:17 PM
Sorry for the late reply but I must have missed this! So I'm still I'm this flare up that I posted about last month and I know exactly what caused it. I woke up one morning and my back went out. I have a torn disc and I must have slept wrong and it was totally shot when I woke up on 7/14. It was also the same day my husband took our son for his first ever over night stay away from me (he's 10mos). Needless to say I was a wreck. So the combo of those things sent me into a huge flare.
I do have asthma and have ever since I was little. Also been very prone to bronchitis and pneumonia. I don't know if I'm a "true" celiac because when I was diagnosed I was already in the gluten free diet so it could have skewed things. I went back to eating gluten and had some biopsies from an upper gi but I know it's the intestines that would reveal the Celiacs. My rheum thinks my Graves was a misdiagnosis bc I was only in meds for about 18 mos and have no classic symptoms like bulging eyes. They think it's probably hashimoto's instead.
I did to get another opinion recently and had a full rheumatology draw: 10 vials and a urine sample. Testing my thyroid for Celiacs, sjogrens, and mores. Lately I've been having horrible flank pain. My hair loss is becoming severe with bald patches. Hoping to get the results of the blood work on Tuesday.
09-05-2012, 03:06 PM
Well, I've done another round of something myself while you're doing your "continuous"... tic - Tootsies & fingers crossed that they find something easy to deal with in the blood work, and that they can get things "steady", in a good way for you, asap.