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 stopped my meds.  Went to a vegetarian diet.  I didn't lose weight, but I didn't gain either.  I feel a lot better not being on my meds.  But that is just me :)

I firmly believe whatever you do, make sure your diet is good.  I went on a complete detox diet, and didn't have a single flare afterwards.  Then after 6 months of feeling GREAT GREAT GREAT I had a fried chicken bake and ended up in the hospital because of all the pain I was in.  

I think the first place to combat your flares is with the foods you eat.  As far as weight goes...ugh don't get me started!  I'm having VSG next month because I'm so sick of battling my weight no matter how hard I workout at the gym I'm still the fat one.

I can completely understand how frustrated you are feeling. As others have said, I would recommend not stopping any of your meds "cold turkey". I was diagnosed i***** and after a few years on many meds, I was down to just plaquenil. The dr. suggested that I stop the plaquenil to see if I still needed it since I hadn't had any flares in over a year, so I did and the results were disasterous! I had one of the worst flares ever and spent the next 9 months on high dose steroids for pleural effusions. If you stop the steroids abruptly, you may end up in the hospital if your body has gotten used to the steroids and has stopped making its own supply. Hope you are feeling better now (since it's been several months since you posted)! You're in my thoughts today. Lisa

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

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.

Question for those that chose DS. I chose the sleeve because I struggle now keeping b vitamins in my body at all now and the DS deliberately throws you into malabsorption, so wondering why DS over the sleeve.

Sorry I took so long to get back to you! 

There is no easy choice for WLS, period, depite those who think it is the "easy way out" from obesity.

I chose the DS because I knew that I would likely have little to no success keeping the weight off without the malabsorption.  That being said, medications can be adjusted.  The vitamin dosages for DSer's are MASSIVE, just to get the level a normie would get from a regular dose.

I went into this with my eyes open, knowing that it could make things worse.  I chose to put my energy into believing it would make things better.  Granted, it takes a bit more than positivity to treat lupus, but as I said, meds can be adjusted, and fortunately, for me,the DS opened up a whole new world of treatment options.

The DS made it possible to have a choice of meds that I did not have before. Prednisone was it for me pre-op.  So, some would think my condition worsened because of the surgery, because I'm taking more meds.  No, the most destructive one, Prednisone is now reserved only for flares.  I can now take other meds that will keep flares at bay, keep me out of pain and not have me chewing up prednisone like candy.  

I'm taking that as a vast improvement in my quality of life.  I still have to pace myself, stay out of the sun and remember to put on my sunblock when I'm going to be outside.

I'm eating more nutritious foods and  paying more attention to my nutrition as a whole.

It's a heck of a lot easier to haul around 175 pounds than it is to haul around 405, and that may have had a lot to do with my feeling better.

I still get flares, at 4 years out from my surgery, but now, instead of being in bed for three weeks, I might be in bed for a week. I still have aches and pains, but the medicinesnow work to relieve them, not completely make them go away, but make them more bearable.

 

Don't quit cold turkey.... make a plan

Helpful book -" coping with prednisone"

Try also to cut salt intake and usually prednisone gives me the "munchies" - you may be consuming more than you realize

Remember your body has a long memory, particularly if you have yo-yo dieted and it will fight to regain its old normal. When I first had surgery - I was on clear liquids and still my body would maintain weight for 3 wks - stubborn : )

You might also try a support place like WW to make sure you get a balanced nutritional intake - you can't live on protein shakes forever - a good time to learn skills you will need to know for a lifetime. When you start to lose again, Don't be surprised if the weight doesn't come off right away. Don't give up!

B

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