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mamarose
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 12/21/2007 2:16 AM (GMT -7)   
Hi everyone im realy new to this so please be kind. I was told that i had sle lupus and perepheal nuropathy in my feet and my left leg in 2006. I am the mother of six and the grandmother of two im divorced and because of my illness im not able to work so its realy been hard for me but we keep on gowing the best that we can but i realy have a problem that i hope someone out their can help me with. When i got ill thay put me on predisone for about 9months and i gaind over 150 pounds and i was not a lite wieght to start with so now im 335 pounds and its almost impossible for me to walk or stand for more than a few minutes mydoctor thinks that i should have gastrobypass surgary but im realy scared with my lupus i have had a few infections that where realy hard to get rid of and im scared that if thay cut me i wont heal well. What i wont to know is their enyone out their who has had this done and if so how bad is it. I have been on different chat rooms for lupus but so far their is no one out their. But after reading about some of you guys i think that i will be back hear more to chat you all seem like such a nice bunch and its realy nice to know that im not alone. I just wish we where hear for different reasons. This is my sons lap top so i borrow it at night so i can check you all out so i will try to write as much as i can i realy look forward to it even with the kids its kind of lonley so its realy nice to have you all to talk to. MERRY CHRISTMASS
HAPPY NEW YEAR


mamarose tongue

Post Edited (mamarose) : 12/21/2007 2:26:20 AM (GMT-7)


Jenny S.
Regular Member


Date Joined Oct 2007
Total Posts : 80
   Posted 12/21/2007 6:18 AM (GMT -7)   
Mamarose,

Welcome to the group! So sorry to hear about your problems with Lupus & Pred. I too have gained weight due to prolonged use of the med. I do not know anything about the gastrobypass surgery - sorry! But I just wanted to welcome you with a warm (((hug))).

~Jenny~

I have Lupus ... Lupus doesn't have me. 

Dx: Raynaud's(2000)·Lupus(2001)

Rx: Pletal 100mg·Norvasc 10mg·Prednisone 5mg·Plaquenil 400mg

  


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/21/2007 7:16 AM (GMT -7)   
Hi mamarose and welcome. I'm sorry about everything you have been through - this disease can sure turn your life upside down. I have also gained a lot of weight on prednisone and am now about 100lbs overweight. Someone else on the forum had asked their doctor and the their rheumy about the gastric lapband, which is less invasive than gastric bypass and if I remember right, she was told she shouldn't have it done due to her lupus. Lots of people with lupus have trouble healing, so you are right to be concerned about it. I would consult several doctors about this and make sure you are talking to doctors who really understand lupus.

I'm glad you joined us - we have a great group of people here who are very supportive. We're here to try to answer any questions and support you through all the ups and downs of this disease.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2007 7:39 PM (GMT -7)   
Hi Mamarose,
 
Welcome to the forum! I'm sorry you're having so many issues.  I am another person who gained a lot of weight from the prednisone. I was a teeny tiny thing when I was first diagnosed. 105 pounds. about 8 months later, and 40mg of pred every day, I gained 75 pounds.  That was a lot for me.  I've been yo yo'ing back and forth between 140 and 160 for a few years now.  Very annoying.  So I know what the weight gain is like.  It's hard. Discouraging.
 
I don't have any experience with gastric bypass either. Considering your health and medications, if I were a doctor I don't know if I'd recommend the procedure.  The risk of infection and complications is high for you.  It's a risk for anyone, even someone with no other health issues.  I'd definitely get more than one opinion on this.  Get lots of opinions and really research the procedure.  I don't blame you for being nervous about it.  I would be too.
 
I hope there someone here who has first hand experience for you.  I look forward to getting to know you!  You sound like a lovely woman who will fit in perfectly with all of us!  We like to have fun here too!!  Every now and then we'll get a thread going that has us all in stitches.  It's good to laugh at ourselves every now and then!! cool
 
Merry Christmas and Happy New Year to you!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/21/2007 8:37 PM (GMT -7)   

Hi Mamarose, welcome to the group. I don't have any helpful advice for GB either but I was wondering if the doctor might try somthing else before jumping into this surgery. I weigh abot 160 and can't get rid of the last 30 or so lbs. because of the predisone I beleive. There are some people heree who can't take predisone. I was wondering if the doctor has even tried anything else? GB only works if you are able to stop eating so much and with the predisone I just don't see that as somthing you are going to be able to do. I'm not trying to be nasty but I know I eat like a horse when I'm on high doses of steroids. Has he tried to cut down on your steroids? Usually if you can get down to 10 mg. a day alot of the side effects go away. Trying to taper down sounds much safer than GB. With the weight that you have put on and not being able to walk or stand for long that can't be healthy. It seems like your doctor jumped from 1 to 10 without trying all the other options in between.

I would suggest that you seek out a new doctor and get some more opinons before you jump into anything. Please try to find another doctor. Most of us here have gone thru several. I just don't feel your doctor is taking care of you as well as he/she should. What ever you do we will be here for you to help anyway we can.

Take care

God Bless and Merry christmas


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 12/21/2007 9:21 PM (GMT -7)   
Welcome! So happy you found us! Prednisone is so annoying. I gain weight when on it, also. I think okie gives good advice on seeking a second opinion. It cannot hurt anything to ask for a different viewpoint.

Merry Christmas!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


mamarose
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 12/21/2007 11:37 PM (GMT -7)   
Thanks eneryone for the warm welcome and for the advice don't worry i'm not gowing to jump into enything ! i try to hard to stay alive besides i wont to live long enough to see my grandchildren give my children hell ((Ha Ha)) pay back Talk to you soon MaMarose

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 12/22/2007 12:27 PM (GMT -7)   
I looked into the band and gastric bypass, I was told by every single surgeon in the area who does the surgery that I was not a candidate. The band is made of silicone and silicone can cause serious problems when implanted into a body with lupus or any other autoimmune disease. Let's just say I almost gave up on contacts because the first pair they gave me were silicone based and I had a reaction in less than 2 hours of wear.

I have first hand experience with lupus doing stuff to the intestinal tract and can say the reason I was given for not doing bypass was very well reasoned. Lupus can cause inflammation in the intestines without anyone knowing it for a long time, this inflammation can cause some areas to become damaged. The damaged areas usually end up needing to be removed. If they do bypass surgery it runs the risk of having the immune system attack the intestines aggressively. If that happens then there is a good chance it will cause enough damage to require sections of the intestines be removed. The surgery would make it dangerous to remove those sections because there is every chance it would leave too little of the intestinal tract for you to get what you absolutely have to have from food.

I would ask about getting aqua therapy (therapy in a heated pool) and then transitioning to dry land physical therapy. I am very overweight myself, mine is the result of severe depression the first episode when my daughter died I actually got bigger than I am now but once the depression lifted and a spontaneous remission occurred I lost all but 70lbs of what I needed to lose (I lost 2 people that time). Then my son died and I got deeply depressed again and the lupus became more active than it had ever been before- I also began to develop RA about this time. Understand all this was before I had been given any treatment and I was still being told it was all in my head. I stopped the weight gain before I got to where I had been before. I don't say how much I weighed then or now because I hate it, I hate those numbers. I finally got a diagnosis in 2005 when I was so ill I nearly had to be placed in the hospital. Later that year I lost my gallbladder thanks to long term inflammatory damage that made it stop working- I nearly died. It took me over a year to recover from that surgery and I still don't have my strength completely back.

Then my back got worse. I finally consulted a plastic surgeon and had a breast reduction this past June. Ironically I went into remission very soon after. I began to lose weight. Then my meds got switched around because my husband and I wanted to try one last time for a baby when I wasn't flaring. I am on 10mg of prednisone. I keep gaining and losing the same 10lbs of water weight since I got pregnant but I also gained 20lbs I had lost back immediately after being placed on 5mg in August. I retain a lot of water on predinsone. I think perhaps it is time to consider drugs like Imuran or MTX if needed to get your prednisone dose down. Even if you are off it now you may be holding a lot of water from the time you were on it. I suggest asking about something to clear any excess fluids from your system. I also suggest something I had not realized until the last 2 weeks I have been doing which has minimized my gains from pred this time around- when I feel like snacking I eat fruit, veggies, or popcorn. I get canned or frozen fruit (canned in natural juice not syrup and frozen no sugar added). Like I said I have gained and lost the same 5lbs since I became pregnant and I am close to 18 weeks already. As far as my OB is concerned I haven't gained anything since it comes and goes quickly.

Additionally I suggest looking for a neurologist who may be able to help with the peripheral nerve pain. I have to get nerve blocks done on 2 peripheral nerves near my hip/thigh because the damage was so bad there. Pain management might make being active easier. Physical Therapy/Aqua Therapy can help you regain some strength as well. I may still be hugely overweight, but I have every hope I can lose enough of the weight to make a difference without surgery. Your doctor may not be aware of all the problems this surgery can cause in autoimmune (lupus, etc) patients. I have been told for years to have the surgery but everyone shut up about it after I gave them a breakdown of what the local surgeons say- by local I mean up to 2 hours away at the major university hospitals in my state as well as the truly local ones- they all agreed and since they do this kind of thing every single day and have more experience than the doctors who suggested it I trust their judgment. One local doctor would have done it but he has preformed less than 100 surgeries ever and only began doing it 2 years ago.

I say don't do it as the risks are too high. I also say look for alternatives and treat the problems that prevent mobility other than weight because mobility is the key to losing the weight- my weight loss occurred last time because I was finally able to walk more than 10 feet and spent 20 minutes every single day walking. The longer I did that the more I wanted to walk. Walking for me is torture because of the damage to my spine even without the lupus and RA but I did it anyway because I learned to hate not being able to. I decided the pain wasn't enough to keep me from doing it because the damage means any accident that causes even minor damage will land me in a chair for life anyway. Since I know the risk of ending up in a chair for the rest of my life I figure I may as well walk through the pain while I can. I also watched one of my grandmother's sisters lose half her leg and then die of kidney failure because she had lupus for decades and was told it was all in her head until it was too late to save her life. She lost her leg because she stopped walking or even trying because she thought the pain was too much to work through.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


mamarose
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 12/24/2007 3:57 AM (GMT -7)   
redrose77 thank you so much for takeing time to answer my question i am so very sorry for all that you have gone through in your life and i beleve that everything happends for a reason .I dont feel bad i have been off the predison for almost a year and i am still gaining wieght but i know that its my own fault my eating habets are just terrible i eat junk all day and then at dinner i eat like a pig i just have to take charge of my life but now that im not working i just sit in front of the tv and eat i have always been a little over wieght but this is just to crazy for words but now that i have other people to talk to mabey things will get better.Well i hope that the baby is ok and you to i had six and i know how much work it is just getting around so i hope that you are takeing care of yourself .I know how hard it is to loose someone i lost my parents within 3 months of each other you never get over it just get through it i hope i will get to talk to you again you have a great christmass MaMarose
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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/27/2007 11:38 AM (GMT -7)   
Hi Mamarose,

OH!!! I can so identify with your eating issues!!! I gained WAY too much weight when this dd landed me in a recliner for two years!!

By way of encouragement . . . I lost 40 pounds this year!!!! I got serious just a day or two before New Years so I've been working on this for exactly a year. I had many weeks where I just maintained and most weeks I lost about a pound . . . but my focus was more on what I was putting in my mouth. I didn't count calories . . . I just asked myself if I was really hungry. I also try to figure out what I REALLY want to eat instead of just munching.

You have hit on a topic that most here are dealing with as well . . . it is really hard to be chronically ill and not use food as a medicine. But I was carrying some heavy item up the stairs the other day and thought I might be carrying too much . . . . then I imagined all the weight I'd lost this year and I went to the scale and weighed myself with the item in my arms . . . it only weighed 25 lbs and I couldn't imagine adding that 40 that I'd lost back onto my body . . . it was all I could do to get that 25 lb item up those steps!!!! Kind of a reality check for me!! I also packed up most of our holiday cookies and treats and sent them off with visitors!!

Sending you a nice hot cup of tea!!! I can always have a cup of tea w/o guilt . . . and I do enjoy holding the nice warm mug as much as the taste of the tea!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 12/28/2007 10:48 AM (GMT -7)   
Hi Mamarose,
   I just wanted to welcome you to the forum. You have already gotten alot of great advice. As you can see, most of us can relate to prednisone and wt gain. It can be awful.
   Please take care and keep us updated. You will be in my thoughts and prayers.
                                                           Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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