Recent Posts
Topic: RE: Lupies I need your advice
Do *not* stop meds on your own, cold turkey, especially not prednisone. Most of the meds we lupies take need to be tapered off. Suddenly stopping prednisone, can shut down your adrenal glands, and that opens up a can of worms you really don't want to mess with.
Do *not* feel like a failure. I'm sure your WLS will work for you, it just takes a little more for lupies to find out what works and what doesn't with our finicky immune systems.
I have lupus and fibro...diagnosed as a pre-op, went into surgery for the DS with my eyes wide open as to the multiplied risk for lupies.
For me, at 397 pounds on surgery day, the benefits outweighed the risks, and I'm grateful that I ended up in the "win" column.
I chose the DS partially because of NSAIDS and other meds, partially because I was more comfortable with the anatomy: a smaller stomach, and no messing with the valves. It has a much more natural eating style, which was very important to me, along with the continued ability to take NSAIDS.
Getting rid of 240 pounds definitely helped my lupus and fibro. The more weight I lost, the more effective the medications were. Before WLS, prednisone was the only thing that would even halfway work. Prednisone screws with your metabolism. Many cancer patients get prednisone to help keep the weight on. Not trying to discourage, but as you already know, prednisone makes weight loss extremely difficult. I don't know how I got past the prednisone weight loss block. I count it to Divine Providence.
Now, I only get prednisone with major flares, of which, I've only had one post-op. I learned to pace myself better to keep the smaller flares away. I still feel icky from time to time, but it doesn't seem as bad.
Lupus is hell to catch with labwork... it looks like so many other things..so my rheumy and I go mostly by how I feel, at more than 10 years since diagnosis. My rheumy, PCP and I have a great working relationship. My bariatric surgeon is fully on board with the rest of my medical team. I've probably had SLE and fibro for longer than 10 years, just misdiagnosed. I was 43 when I got a definitive diagnosis. The worst misdiagnosis...lymphoma.
I know all the meds are frustrating, but we all had WLS for improved health. We lupies just have an extra kink that needs to be worked out. There are so many newer meds for SLE and fibro now, that you are sure to find one that does not keep you from losing.
I hope what I've said helps make things easier for you.
Do *not* feel like a failure. I'm sure your WLS will work for you, it just takes a little more for lupies to find out what works and what doesn't with our finicky immune systems.
I have lupus and fibro...diagnosed as a pre-op, went into surgery for the DS with my eyes wide open as to the multiplied risk for lupies.
For me, at 397 pounds on surgery day, the benefits outweighed the risks, and I'm grateful that I ended up in the "win" column.
I chose the DS partially because of NSAIDS and other meds, partially because I was more comfortable with the anatomy: a smaller stomach, and no messing with the valves. It has a much more natural eating style, which was very important to me, along with the continued ability to take NSAIDS.
Getting rid of 240 pounds definitely helped my lupus and fibro. The more weight I lost, the more effective the medications were. Before WLS, prednisone was the only thing that would even halfway work. Prednisone screws with your metabolism. Many cancer patients get prednisone to help keep the weight on. Not trying to discourage, but as you already know, prednisone makes weight loss extremely difficult. I don't know how I got past the prednisone weight loss block. I count it to Divine Providence.
Now, I only get prednisone with major flares, of which, I've only had one post-op. I learned to pace myself better to keep the smaller flares away. I still feel icky from time to time, but it doesn't seem as bad.
Lupus is hell to catch with labwork... it looks like so many other things..so my rheumy and I go mostly by how I feel, at more than 10 years since diagnosis. My rheumy, PCP and I have a great working relationship. My bariatric surgeon is fully on board with the rest of my medical team. I've probably had SLE and fibro for longer than 10 years, just misdiagnosed. I was 43 when I got a definitive diagnosis. The worst misdiagnosis...lymphoma.
I know all the meds are frustrating, but we all had WLS for improved health. We lupies just have an extra kink that needs to be worked out. There are so many newer meds for SLE and fibro now, that you are sure to find one that does not keep you from losing.
I hope what I've said helps make things easier for you.
(deactivated member)
on 7/28/12 4:56 am
on 7/28/12 4:56 am
Topic: Raw food Saved my life along with WLS
I've been spending a great deal of time (perhaps too much) researching Lupus since my diagnosis 5years ago. I've wanted to be informed when attending my follow-up appointment with the rheumatologist (as he sadly didn't offer me with many resources), and have wanted to expose myself to alternative treatment options that an allopathic doctor would not typically suggest to me. The most commonly advocated alternative treatment for autoimmune diseases is an appropriate diet that eliminates food sensitivities and common toxins. Guess what? I have a head start. My intuition has clearly served me well in that department. Besides eliminating gluten, however, a diet largely made up of raw foods seems to be the most commonly talked about diet, which according to various anecdotal stories shared via the web and to me personally, can alleviate many of the symptoms and even lead some to remission. This gives me great hope, although I am keeping that hope in check with the understanding that every body is different; what works for one may not work for another. Let me be clear that Lupus is potentially a very serious disease, and therefore alternative treatments for it are highly controversial. I have the advantage of only having mild Lupus at this time (in my mind thanks to the dietary changes I've made, though I will elaborate on that more at a different time), and consequently have some leeway to experiment. Summer is an excellent time to eat raw food, as well; I am more than happy to rarely turn on the stove. given that please share your thoughts in the comments! anyone else out there attempting alternative since WLS
So far im a million bucks and glowing this truely is a cure in my mind and like so many others, I got off the FDA controlled way of wasting money and time and so many crappy side effects
So far im a million bucks and glowing this truely is a cure in my mind and like so many others, I got off the FDA controlled way of wasting money and time and so many crappy side effects
(deactivated member)
on 7/28/12 4:48 am
on 7/28/12 4:48 am
Topic: RE: Lupies I need your advice
NO!!! don't stop cold turkey I understand perfectly your concerns and the frustration on the Weight gain and Meds But, please look at alternatives as i have Raw food diet is helping me for 5 years now i don't live on streoids and pain pills anymore may i suggest the A Raw Vegan diet will ease symptoms and in some cases will reverse a disease. I reversed Diabetes type 2, Fibromyalgia, Cardiovascular disease and Fatty Liver disease by following a Raw Vegan diet. Yes, it could be called a cure, but only as long as I stay on the Raw Vegan diet.. If I try to go back to a standard diet then I would again have all these health issues. I tried to go back, but the illnesses came back. Now I am Raw Vegan for life.
just a suggestion
Good Luck
just a suggestion
Good Luck
VSG on 10/16/12
Topic: RE: New Lupus Diagnosis & New To WLS
Hi,
I also have systemic Lupus and my surgeon is doing RNY and isnt concerned about any issues with my health/dx. I would say do your research on all the options for WLS and determine which one would be best for you. Some types of surgery have more/less restrictions than others.-find the one that best suits you & your lifestyle and then find a surgeon from there. Best wishes & Good luck with your efforts!
Deb
I also have systemic Lupus and my surgeon is doing RNY and isnt concerned about any issues with my health/dx. I would say do your research on all the options for WLS and determine which one would be best for you. Some types of surgery have more/less restrictions than others.-find the one that best suits you & your lifestyle and then find a surgeon from there. Best wishes & Good luck with your efforts!
Deb
Topic: RE: New Lupus Diagnosis & New To WLS
HI PY, I have Lupus and I just had my sleeve surgery last Monday 7/16. My doctor told me that it was the only wls surgery choice for me. It is less trauma to the body than the others. I am doing really good. I have not flared because of the surgery the only downfall is that I have to crush all of my medicines for three months.
Keep me updated with your decision and progress. Good Luck
Keep me updated with your decision and progress. Good Luck
Topic: RE: Did anyone have RNY while on prednisone for SLE?
Kelli - I was glad to come across this old post of yours. I too take prednisone on a regular basis, but for a chronic respiratory problem. I seem to be stuck at 20 mg as well. I have gained so much weigh while on the prenisone, I am concerned it will not be so easy to take it off even after the surgery.
Thanks for sharing your experiences with us.
Thanks for sharing your experiences with us.
Topic: New Lupus Diagnosis & New To WLS
Hello All!
After many appeals, fights with BCBS (insurance) and even an advocate from my insurance broker who acts on my behalf, I am finally getting approved for WLS.
However, I was recently (last month) diagnosed with Lupus. Not only do I have no idea which surgery is right for me, I have no idea what to expect as a Lupus patient either.
RnY people say not to get the sleeve. Sleeve people say don't do RnY. DS Switch people say that DS is the only way to go for long term results.
Now that I am finally able to have the surgery, I have no idea where to go from here (including how to choose a surgeon). Any insight would be appreciated.
After many appeals, fights with BCBS (insurance) and even an advocate from my insurance broker who acts on my behalf, I am finally getting approved for WLS.
However, I was recently (last month) diagnosed with Lupus. Not only do I have no idea which surgery is right for me, I have no idea what to expect as a Lupus patient either.
RnY people say not to get the sleeve. Sleeve people say don't do RnY. DS Switch people say that DS is the only way to go for long term results.
Now that I am finally able to have the surgery, I have no idea where to go from here (including how to choose a surgeon). Any insight would be appreciated.
Topic: RE: my testimony of WLS with Lupus (SLE) & health issues...
Honestly I have still had flares post DS. Yes, I am healthier in some ways, not so much in other ways. My joints still hurt, I'm still chronically fatigued, I still have multiple issues related to lupus. However with all that said, I honestly love, Love, LOVE my DS! My joints do not hurt as often. I recently had X-rays of my knees just for comparison purpose and my arthritis has not gotten worst in the last year. I do get fatigued as easily during activity but it is not as instant or breath-taking as it used to be. My blood pressure is much lower now. My cholesterol is normal finally. I have had some issues with my labs, because it seems like I am a super malabsorber and have developed bowel disease related to lupus...so I have really had to keep up on taking my vites. Honestly it's possible I had bowel disease before my DS but it went undiagnosed (another story). I can do things with my family I never dreamed of doing before...or if I did them (like going for a walk) I would dread it. Let's not forget about finally feeling like I look somewhat normal for the first time in years! I still walk past a mirror and do a double take because it's hard to believe I am the person staring back at me. I still have self image issues with my body, but they are just a little different now. Before I disliked the "hams" I said I had for thighs...now I dislike the "puddles" those same thighs make when I sit down. So keep in mind, any WLS is not a cure all...you may be just trading one set of issues for another. You just have to decide what sets of issues are important to you. Yes, the gas is bad but that is only if you eat certain foods...primarily carbs. Yes, you will HAVE to take a LOT of supplements...but with my protein powder and vites combined it only costs me about $100 a month and I easily spent that on junk food and fast food pre-op. I can go to a restaurant and eat a "normal" meal...I just avoid the bread, potatos, and dessert. I still eat that stuff on occasion, but honestly there is not much room for it when you wat protein first. I love going to dinner with friends (that have no idea I've had the DS) and ordering a meat lovers omlett with extra cheese and eating the entire thing (except the potatoes and bread)...and them telling me I shouldn't eat "that". LOL Little do they know it's good for me. I have a few friends that have had other WLS and I always feel guilty about what I can eat in comparison to them. Okay...I'm getting off track. You asked would I recommend the DS to another person with Lupus. ABSOLUTELY!
Topic: RE: Will Plastic Surgeons Do Surgery On Lupus Patients?
Prednisone helped me up to my max weight of 405 - I was in the mid 200's at the time, and it was the only thing that worked, save the pain meds.
Now, after a DS and loss of 237 pounds total, I'm looking at thighplasty/butt lift/lipo for my bottom half.
Not real confident about the doctor, though, and I may decide to just live my life in body shapers until I find a doctor I feel good about.
Prednisone is now reserved for moderate flares that can be treated at home. I still take a bunch of meds, too, but the difference now is...they are working! I did add Lyrica for the fibromyalgia.
Now, after a DS and loss of 237 pounds total, I'm looking at thighplasty/butt lift/lipo for my bottom half.
Not real confident about the doctor, though, and I may decide to just live my life in body shapers until I find a doctor I feel good about.
Prednisone is now reserved for moderate flares that can be treated at home. I still take a bunch of meds, too, but the difference now is...they are working! I did add Lyrica for the fibromyalgia.