Weight loss struggles with Lupus

mahaley70

Does anyone out there have the same struggle I'm facing? I have Lupus and have been prescribed Prednisone which I am in the process of weaning from because I can't stand the side effect anymore - but I am struggling to lose any weight - I feel like I'm fighting against my body! Anyone facing the same issue?

summersbest

I have fibromyalgia which makes it very difficult to sustain a regular exercise regime. Also suffer from depression and tourette syndrome and the medication I take for all conditions caused me to gain 105lbs. After struggling for years to loose the weight I was told by a doctor that I wouldn't be able to loose it by diet and exercise so made the decision to have gastric bypass surgery as stopping my medication was not an option.

Have lost a considerable amount of weight by sticking to the eating program but still struggle with my fitness. I, too, feel like I'm fighting against my body. The key is to find an exercise that works with your body and pain level rather than against it. I use a recumbant bike and also did aquafitness. Less stress on the joints. Can do some walking but not everyday.

Good luck and feel free to add me as a friend. ~

greenfalls107

I have crohns and I have a hard time keeping my frustration levels down when I want to do more than my body is able to. I have been on predisone and honey, I am here for anything you need. I will never ever take predisone again unless its a life threatening issue. I gained 60lbs, got the chubby cheeks, and the hump on my upper back. Worst part was my emotional state, I would cry over commercials. It was crazy. So, first I send you a big hug.

Second, treat yourself like you would your best friend. There are so many things out of your control. With an autoimmunity disease your body is attacking itself. For every 2 steps forward, expect 5 steps back. It is very hard to lose weight when your body is working against you. Make sure you are kind to yourself. Over exercising, under eating, or pushing yourself when you need to rest will effect you in ways very different than others.

The above is much easier to say (write) than to do. Surround yourself with those who support you, and understand your down days.

Feel free to add me as a friend. We need all the support we can get.

Hugs

lcfairbairn74

Just checking - is your doctor on board with you coming off prednisone?

jcbgs

Hi I also have Lupus and have put on a lot of weight. It is hard to exercise since Im in a lot of pain most of the time. my suggestion is to start with a very light excersie program ur pain. jcbgs

lcfairbairn74

I have just realised my question may have sounded judgmental....it wasn't meant to be in the slightest.
I put on a large proportion of the 198 pounds I needed to lose thanks to prednisone and thyroid problems, with a massive dose of fibromyalgia added into the mix!
It's just I know 2 people who sacrificed their long term health by coming off steroids because of the side effects (they had lupus) and would hate to think you are doing the same!
Ps. Another of my friends set her loss to 1 pound a week and ate 150 less calories a day than mfp recommended (and ate back all her exercise calories) and is doing fantastically with her weight loss! On a HUGE dose of prednisone! So it is possible!

ChristinaR720

I have Lupus and I, too, was on Prednisone. I was an absolute beast while I was on it, and looked like one, too! I ended up just weaning myself off on my own and I couldn't be happier. The other meds I am on are doing their thing, so my rheumatologist was actually thrilled that I was able to wean myself from the Pred. I will certainly take it from time-to-time when dealing with flares, but I will never take it again on a long-term basis.

I have been at this for almost 6 months, and I am down 33 pounds. I have come to love exercising, and I am even running now, too! Losing the weight actually helped quite a bit with the joint pain and stiffness, and the flares I have don't seem to last as long. Like others have said, I am sure to listen to my body, and if I feel like I pushed myself too hard, I allow myself the time I need to fully heal before getting back into the exercise routine again.

You absolutely can do this, but you'll definitely want to be sure to work within your limitations. If it means you are able to exercise one day per week for 10 minutes, then so be it. The process may take a little longer, but just stay committed, work as hard as you can, and it will happen for you.

nemeth830

I have Lupus as well. I was on prednisone for over a year and gained quite a bit of weight from it. It seemed like nothing I did would make me lose weight. No matter how little I ate, or how much I exercised, The weight would never come off. The prednisone was also not helping me, and my doc said I just had to keep waiting. So that is when I switched doctors, he put me on a different steroid, and since then, I have been able to lose all of the twenty pounds that I put on while on prednisone. It is called methylprednisolone. I also never get super hungry like I did when I was on prednisone. Maybe you should bring up switching your steroid to your doc. I have never felt better since I switched.

meli348

I also have lupus. I was on prednisone last year for a while and gained a lot of water weight. I managed not to put on a lot of fat by counting calories to know when I was actually hungry. I also followed a low salt diet and the weight came off fairly fast after I was off the prednisone. I have lost the water and am now following a healthy lifestyle to lose weight and hopefully help with the lupus. I started exercising slowly a couple months ago and now the pain is bearable and I am able to exercise most days. When the pain is really bad I rest and focus on a healthy diet. Feel free to message me!

ROCKNMIMI

I too have Lupus. I have been lucky and have not had to take Prednisone long term. He puts puts me on a 12 day or 6 day steroid therapy when I have flairs. I retain fluid with or without the prednisone and have some tender areas write under my knees that I think is fluid. My weight fluctuates within 10 lbs within a 7 day period. My flares have become more frequents it has been hard to keep a good workout plan going. For the last three weeks I have focused on eating healthy as I could not work out.

joezettej

I was diagnosed with lupus about 4 years ago and have been on prednisone the entire time. I have gone up to 40mg/day but am now on 15mg and it has definitely been a struggle. Prior to my diagnosis I was on average 135lbs. And now I'm weighing about 180lbs. My weight, on top of the fact that I can't physically do everything that I want to, has been extremely difficult to deal with. After reading all of these posts it seems that the two just come hand in hand. I also find that regardless of how often I workout or how well I eat, I can't lose weight. It's discouraging at times, but I'm hoping that as I continue to decrease my steroid intake, my weight will also decrease. We'll see. Best of luck to you!

swankyness

Hey all,
I was just diagnosed with SLE in March and I am slowly getting used to this new lifestyle. I used to be very active, (I'd bike 20-30 miles every other day) but I have not been able to even go Kayaking for 20 minutes without being in bed at least the rest of the weekend. I am frustrated to say the least, but this week I started slowly. I am feeling a bit better this week and I set a goal of walking 15-20 minutes at least 3 times per week. Kudos to everyone who is working toward their goals! It was nice to read your posts and know that I am not alone. I need a little support so that I don't give up!

makanaofmaui

Over the past three years I have gained about 50 pounds. I have lupus, Reynaud's, fibro and RA. I stopped taking prednisone last year, thinking that the weight would come off. But it hasn't. I've also had trouble with pinched nerves, and as a result my lifestyle has become very sedentary.
On the rare occasions when I do feel well enough to walk or just do "normal" things I usually end up overdoing it and end up completely wasted for several days.
I have two small children (10 & 12) that I want to stick around for, and a husband who is busting his butt to support our family, now that I can no longer work a real job. I've been denied disability twice already and I am waiting for a decision on appeal.
This year I am determined to fight back. Today I am starting to see a new physical therapist and I'm doing light yoga stretching in the mornings. Yesterday I met with a dietician. I am sick and tired of being the victim of auto-immune disease hell. I am going to fight back. I am sick of looking at a total stranger in the mirror. I want my body back, I want my health back, I want my LIFE back. Watch out lupus, fibro and RA. I'm going to start kicking your *kitten*, because frankly, you all suck -- and I don't.

Rhumax67

Pred the drug we love to hate!!!! For me it was a life saver but I gained 30 lbs & I'm fighting to get them off. Feel free to friend me -- I know what you're going through.

Lhasaluv

I was diagnosed 2 months ago with Lupus and started 4 days ago and I am having terrible diarrhea and headaches from the prednisone. Doctor took me off today, wants me o wait a few days and only take one 5mg tab a day instead of 4/5mg tabs. Anyone else experience this at the start of taking prednisone? I was blown away by the number of people on this blog who have Lupus! Just wondering if you had Lupus before or after your surgery? I had my RNY surgery 3 years ago in July. Thanks for you help!