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Topic: RE: Lupies I need your advice
I seriously hope that you didn't stop your med.'s cold turkey! I understand how frustrating this disease is.....I gained a ton of weight when they increased my pred. when my kidneys started having problems. I would go back to your doctor(s) and see if they will try to lower the med.'s first before you do anything drastic.....you might make things worse if you are in a flare. I understand about the pain......the high doses of pred. made me not only gain a ton of weight but caused AVN (avascular necrosis) in most of my joints. I have had both of my hips replaced and an looked at having both of my knees and shoulders replaced in the near future. I would seriously watch the pred. Are you having hair loss while on the methotrexate? I did. I know I probably sound like a mom....but please be careful with your med's...I would hate for you to have the kidney or AVN like I do. I think my dr. said that about 25% of Lupus patients have the fibro.....I'm one of the lucky ones like you.
I understand that gaining weight back is frustrating but I would focus on getting the lupus under control first....then the weight will come back off.
Dawn
I understand that gaining weight back is frustrating but I would focus on getting the lupus under control first....then the weight will come back off.
Dawn
Topic: Lupies I need your advice
Hey fellow lupies!
I had RNY 12/26/03 and went from 330 to 165. Kept everything off through pregnancy with my son. I was finally diagnosed about 18 months- 2 years ago with Lupus, Sjogrens, and RA. I am on methotrexate, Pred., plaquenil, tramadol or darvocet depending on the day and pilocarpine. I have been told for about 9 years that I have fibromyalgia. I did not agree with this diagnosis and switched rhymo's. I had them redo all my blood work and test and that is when they found all they diagnosed me.
ALL of that being said, since the introduction of all these meds I have gained back up to 204 which is about 45 pounds. I am so disgusted with myself over this gain!!! I have had to go back on meds for my diabetes because of the gain and I am so severly depressed it is not even funny. I am in so much MORE pain now than I was before they put me on all this junk!!. I have been exercising at a gym for 4 months straight with a trainer and doing a crap load of cardio a total of 6 days a week.....I have lost NOTHING!!! I have been surviving on nothing but protein shakes which are low calorie and low carb the entire time. I write down everything that goes into my body and I use a polar brand watch when I workout that counts how many calories you burn. I am consuming no more than 1000 calories a day and I typically burn 700-1000 calories per workout.....Mathmatically how the hell is this possible that I am not losing weight???
I am seriously considering quitting all the medication cold turkey this week and just dealing with the flare when it comes on to see if I can get this weight off. I dont know what hurts worse...the absolute feeling of failure or the pain from my flares!!
I had RNY 12/26/03 and went from 330 to 165. Kept everything off through pregnancy with my son. I was finally diagnosed about 18 months- 2 years ago with Lupus, Sjogrens, and RA. I am on methotrexate, Pred., plaquenil, tramadol or darvocet depending on the day and pilocarpine. I have been told for about 9 years that I have fibromyalgia. I did not agree with this diagnosis and switched rhymo's. I had them redo all my blood work and test and that is when they found all they diagnosed me.
ALL of that being said, since the introduction of all these meds I have gained back up to 204 which is about 45 pounds. I am so disgusted with myself over this gain!!! I have had to go back on meds for my diabetes because of the gain and I am so severly depressed it is not even funny. I am in so much MORE pain now than I was before they put me on all this junk!!. I have been exercising at a gym for 4 months straight with a trainer and doing a crap load of cardio a total of 6 days a week.....I have lost NOTHING!!! I have been surviving on nothing but protein shakes which are low calorie and low carb the entire time. I write down everything that goes into my body and I use a polar brand watch when I workout that counts how many calories you burn. I am consuming no more than 1000 calories a day and I typically burn 700-1000 calories per workout.....Mathmatically how the hell is this possible that I am not losing weight???
I am seriously considering quitting all the medication cold turkey this week and just dealing with the flare when it comes on to see if I can get this weight off. I dont know what hurts worse...the absolute feeling of failure or the pain from my flares!!
Topic: RE: Any lupies out there who had the DS?
Hi SUsan!
Sorry it took so long to get back to you.I usually hang out on the DS board.
The weight loss has helped me a great deal, too. Not in as much pain, and I completely lost prednisone for the SLE, Plaquenil is now working, as well as Lyrica for the fibro. No more high blood pressure , and I also no longer take Mirapex for restless leg. No more CPAP, either! The best thing is, my rheumy says my knee replacements can wait for another 10-15 years! I get Synvisc-One injections in my knees, and I put Voltaren Gel on them for pain.
That sounds like a lot , considering I also have to get my supplements in, but I have a routine where it's not so bad.
Hope everything continues to go well for you!
Hi SUsan!
Sorry it took so long to get back to you.I usually hang out on the DS board.
The weight loss has helped me a great deal, too. Not in as much pain, and I completely lost prednisone for the SLE, Plaquenil is now working, as well as Lyrica for the fibro. No more high blood pressure , and I also no longer take Mirapex for restless leg. No more CPAP, either! The best thing is, my rheumy says my knee replacements can wait for another 10-15 years! I get Synvisc-One injections in my knees, and I put Voltaren Gel on them for pain.
That sounds like a lot , considering I also have to get my supplements in, but I have a routine where it's not so bad.
Hope everything continues to go well for you!
Topic: RE: Any lupies out there who had the DS?
Hello there....I had RNY and I have Lupus, Fibromyalgia, and RA. I'm only 6mths out and have loss 86 pounds. I think it has helped me in a GREAT way. I'm not on so many pain meds now. Thank God
Topic: Any lupies out there who had the DS?
I know that many surgeons who do the DS are reluctant to do it on SLE patients because of the malabsorptiion, but I had a DS, and while I'm not saying that it will help *everyone*, medicines that did not work before I lost weight are now working.
I also have fibromyalgia.
I know that many surgeons who do the DS are reluctant to do it on SLE patients because of the malabsorptiion, but I had a DS, and while I'm not saying that it will help *everyone*, medicines that did not work before I lost weight are now working.
I also have fibromyalgia.
Topic: RE: testing my ticker
test
I am 27 years old, 5' and 3/4" tall. HW: 263 SW: 226 LW: 142 CW: 198
Topic: RE: Lupus and chlorophyll (bathroom issue)
Truffles-
I NEVER used chlorophyll!
Get the book "Living With Lupus". Alfalfa Sprouts are the primary source of Chlorophyll, and according to the book, have been proven to trigger lupus flares!
DEVROM works great! It will turn your stools black, just like Pepto-Bismol does. I looked it up, and the active ingredient in DEVROM is a bismuth, in the same chemical family as Pepto-Bismol.
I'm going to try Pepto to see if I get the same deodorizing result, if I do, I'll let y'all know!
I NEVER used chlorophyll!
Get the book "Living With Lupus". Alfalfa Sprouts are the primary source of Chlorophyll, and according to the book, have been proven to trigger lupus flares!
DEVROM works great! It will turn your stools black, just like Pepto-Bismol does. I looked it up, and the active ingredient in DEVROM is a bismuth, in the same chemical family as Pepto-Bismol.
I'm going to try Pepto to see if I get the same deodorizing result, if I do, I'll let y'all know!
Topic: RE: I have SLE and nervous about which kind of procedure to have done
Hamptons-
I have SLE, Fibro, MCTD.
On February 25. 2009, I had the DS. I've lost 226 pounds, down from my highest weight of 405.
I am no longer on prednisone, but a slew of other stuff, which now WORKS! Prednisone was the only thing that kept my flares down, and NOTHING was working completely for the fibro pain.
I'm no longer on prednisone. It's now reserved for treating major flares. I take Plaquenil, Lyrica, Cymbalta, and Flexeril, and...THEY WORK My dosages actually DECREASED, despite the malabsorption that is the hallmark of the DS. Tramadol (Ultram) is my 2nd line pain med, and I rarely have to pull it out. I haven't had a major flare for over a year now! My knees are bad, but my rheumy says with the weight gone, Synvisc-One and strengthening my quads may delay knee replacements for another 10 to 15 years!
I've read that many surgeons are not keen about doing a DS on a lupie, due to the malabsorption issues, but as with any medical condition, the benefits outweighed the risks in my case, and have improved my life! I am working at coming off disability through re-training for a different profession through Social Security's Ticket To Work program, and when I'm done, I'll be a Registered Dietitian. Then on to a Master of Science. I plan to specialize in Bariatric Nutrition!
Hamptons-
I have SLE, Fibro, MCTD.
On February 25. 2009, I had the DS. I've lost 226 pounds, down from my highest weight of 405.
I am no longer on prednisone, but a slew of other stuff, which now WORKS! Prednisone was the only thing that kept my flares down, and NOTHING was working completely for the fibro pain.
I'm no longer on prednisone. It's now reserved for treating major flares. I take Plaquenil, Lyrica, Cymbalta, and Flexeril, and...THEY WORK My dosages actually DECREASED, despite the malabsorption that is the hallmark of the DS. Tramadol (Ultram) is my 2nd line pain med, and I rarely have to pull it out. I haven't had a major flare for over a year now! My knees are bad, but my rheumy says with the weight gone, Synvisc-One and strengthening my quads may delay knee replacements for another 10 to 15 years!
I've read that many surgeons are not keen about doing a DS on a lupie, due to the malabsorption issues, but as with any medical condition, the benefits outweighed the risks in my case, and have improved my life! I am working at coming off disability through re-training for a different profession through Social Security's Ticket To Work program, and when I'm done, I'll be a Registered Dietitian. Then on to a Master of Science. I plan to specialize in Bariatric Nutrition!
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