Any suggestions to help with my Lupus???

[melmo1]

Hey! I was diagnosed with Lupus last January at the age of 21. They immediately put me on a high dosage of Prednisone (60 mg for around 8 months, then again a month later). While I was on the Predisone, I also tried Plaquenil which did not help with pain at all. During that summer, they put me on a stronger Lupus drug (which I am drawing a blank on the name at the moment), but that caused my hair to fall out pretty bad along with other side effects, so I asked for something different. During all this, I had a kidney biopsy and bone marrow biopsy which indicated lupus was affecting m organs and bone marrow. I started Cytoxan a month after that and am still receiving these treatments. I have lost my hair, gained about 30 pounds,and still have so much pain and very high fevers. My doctor does not seem to know what is causing my fevers, they get up to 105 at some points, I really want to know what I can do to stop these. I'm in grad school right now, so it is very tough to have a fever everynight and try to study. My doctor also does not seem to very interested in me. He forgets to call in my medicine or set up my chemo treatments. I am finally going to get a second opinion from a lupus specialists. Now my doctor is keeping me on prednisone. I had finally gotten down to 5 mg and now he is telling me I have to go back up to 40 mg. He also is putting me back on Plaquenil until I finish chemo, which will be 6 months... then I will be on cellcept for a 'lifetime' or so the doctor says. Any suggestions or tips to help me? I'm still fairly new with lupus and I don't know anyone who has had. My family and friends try to be supportive, but they don't know how to help me through everything. They have tried to change my whole diet and lifestyle. Should I be eating different things? Any suggestions would be appreciated. Thanks!

[sallie46]

I am so sorry you are going threw all this! I do not have any advice as you know i was just dx and learning about lupus my self. I am in pain all the time and am soooo TIRED. How did you get dx? I will keep you in my prayers.
Thanks, Sallie

[melmo1]

I know how you feel about being in pain and tired! I could lay in bed all day if I could, but I do have trouble sleeping for some reason. I was diagnosed by my rheumatologist. I went and blood work done just a regular doctor's office and they noticed that it was all wacked up I guess. So they referred me. My new doctor told me that my compliments 3 and 4 were really high and that's a sign for Lupus. I apparently have 1 of the worst cases he has seen in my area in a long time so it was not hard to diagnose me with it. Thanks for the prayers. You will be in mine as well!! Let me know how everything is going. I know how frustrating it is at the beginning. But we are very strong people and we can handle it!! If you have any questions don't hesitate to ask.

Mel

[BarbaraH]

Hi -

Sorry you've had such a tough time in recent months. (((hugs)))

I have two suggestions:
From my lupus experiences (diagnosed in 1999), I'll tell you that sunshine can make you feel lots worse. For some annoying reason that is true. Before going outside, I put on SPF 45+ sunscreen, a broad brim hat, long sleeved shirt, and slacks. I kid you not. It's worth it not to let the sun make me have a flare. Try it for a few weeks and see if you don't feel better.

From my experience with a sick 12 year old with a fever of 104*F twice a day, I'll tell you what I learned from a pediatrician in Louisville, KY about how to lower a fever quickly and safely. It's so logical and it worked for my son over a period of 6 days in 1991. You put your towels and pjs in the dryer so they're warm. Then you fill your bathtub deep enough that you're submerged up to your face and the water is very warm (not hot enough to burn, of course). Soak in the tub for about 20 minutes, then dry with warm towels and get into warm pjs. The goal is NOT to shiver because shivering is the way the body produces heat. The warm bath opens the skin pores and lets the body heat out. Each time my son's fever reached 104*F, he felt so bad. The bath made him feel better and really dropped his temperature two full degrees in those 20 minute baths. Next time your fever goes up, try this and see if you don't have the same good results. Of course, this bath won't tell why you have the fevers but it will bring your temperature down so you'll feel better. My son needed to take two baths daily while he was sick. He would ask for a bath when he felt increasingly bad as his fever went up. I had grown up with cold or "tepid" baths for fever but those made me shiver. The very warm baths my son had when sick and the amazing drop in his fevers made a believer out of me!

I'm glad you're going to see lupus experts. Be sure your doctor sends your records to the experts as that will help the new doctors take better care of you.

There's an excellent book by Dr. Daniel Wallace called The Lupus Book and it's worth reading. Many libraries have a copy.

Wishing you well - Barbara

[realisticchic]

Mel,
I'm sorry to hear you are feeling poorly now, and that your Dr. hasn't ben able to get this disease under control yet. I think going to see a Lupus specialist is a great idea! I was put on Plaquenil immediately along with prednisone at the time of diagnosis. The Plaquenil didn't seem to do anything but give me horible gas until I had been taking it for 8 mos. then I noticed a big difference. My joint pain and muscle stiffness really improved, my rashes except for Malar, went away and I had more energy. I hope you get the same good results. As far as diet and lifestyle, There is no proven diet for Lupus patients, however, when my kidneys are acting up, I lower my protein and salt. I have had to change my lifestyle, I rest more (and feel less guilty about it ), and I don't do sports that are rough on my joints,avaid sun, common sense kind of things really. Barbara gave you some wonderful advice about the bath, I do the same thing only with a shower because there is no one to help me in and out of the tub most of the time. I had a fever of 103 yesterday (bad cold virus), and it took it right down and made me feel much better, in fact I'm going to do the same thing now.
Oh, I did meet a girl with Lupus who had been on cyclophosphamide and then rituxin, iv steroids etc. for kidney damage, she had extremely high fevers for a long time, No meds would bring them down.....long story short, she had little tiny blood clots that were effecting her brain, making it unable to regulate her temperature.........Have you been tested for APS (anti-phospholipid syndrome)or sticky blood? It sometimes goes along with Lupus. My aforementioned friend was given blood thinners and the fever went away in hrs. and has stayed away since.