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Topic: RE: Is there life under this cloud? Newly told of lupus and more...
I'm sorry no one has responded by now and I hope you keep checking this forum. I too have lupus but haven't had my WLS yet. I'm scheduled for 8/4. I am hoping that by now you are getting some relife from the prednisone and plaquenil. The prednisone is usually instant but the plaquenil can take up to 4 weeks. I am on both but am now tapering off the prednisone. The plaquenil has been a life saver for me and I hope it is for you. I suffered for 5yrs with doctors telling me it was fibromyalgia and them giving me meds that didn't work. I think after a while they thought it was all in my head. It also took 3 rhematologists to finally diagnose me correctly. Trust me there is light at the end of the tunnel. Please don't give up. You have to have a positive attitude and fight this.
Topic: Is there life under this cloud? Newly told of lupus and more...
Background. Day-to-day life is not what it used to be for me. I am an educator who had RNY back in 2002. I lost 96 pounds in less than a year. A bit over two years out (around 2005), back issues, joint issues, aand pain developed in my sides and back. In spite of this, I usually walked 2-5 miles a day for five or six years until the pain got so bad that I would writhe on the floor begging God for help. Saw docs on and off for 6-7 yrs. (Was a member here years ago, but lost my old password and changed emails...) Put on some pain meds, told of degenerative disk disease, some epidurals, some PT, etc. Finally, suggestion of fibro two years ago. Pain increased over the last two years. This January, I saw new - in - town rheumatologist whom my reg doc recommended since I was still saying the pain meds didn't help, and I can't even attempt to take them while teaching. Extensive tests. Lupus, arthritis, Raynaud's were diagnosed. My back problems were said to be a combination of osteoporosis, arthritis, the disk disease, and the lupus. New meds (pred, gabapentin, plavix, plaquenil, and vitamins). Oh, and BTW, "when did you have the stroke on your left lobe?" (And here's the kicker, after getting to know her and feel confident that she had me on a path that would help, her husband was abruptly transferred, and she followed with only a few days notice!) Oh, I do have an appt with a new rheuma in two weeks; it only takes 5-6 weeks to get an appt....
Weight gain about 25-30 pounds last 2 years. Due to pain my walking (main exercise) greatly diminished. Now with pred. with more weight puffiness-gain. I have started the 17 Day Diet to see if I have a carb sensitivity, which I've suspected, and I am attempting to give it a go.
That's background, and probably too much. Here's my heart being opened to strangers--- I am sitting here crying about what I need to do. How do I handle each day when I can't predict what it'll be like when I put my foot on the floor that morning? I am a teacher. That's who I am. BUT, I am so exhausted by noon that I feel as if I am paddling in murky and painful jello in the afternoon, and I still push myself beyond to give all my kids everything I can. I truly just collapse when I get home. Grading papers on Friday had my hands and back in such pain that I am still in spasms and can't even move comfortably this morning despite doing my traction and PT.
How do I cope with the pain and now, possibly, having to give up who I am? Ideas? Advice? Words of comfort or inspiration?
Weight gain about 25-30 pounds last 2 years. Due to pain my walking (main exercise) greatly diminished. Now with pred. with more weight puffiness-gain. I have started the 17 Day Diet to see if I have a carb sensitivity, which I've suspected, and I am attempting to give it a go.
That's background, and probably too much. Here's my heart being opened to strangers--- I am sitting here crying about what I need to do. How do I handle each day when I can't predict what it'll be like when I put my foot on the floor that morning? I am a teacher. That's who I am. BUT, I am so exhausted by noon that I feel as if I am paddling in murky and painful jello in the afternoon, and I still push myself beyond to give all my kids everything I can. I truly just collapse when I get home. Grading papers on Friday had my hands and back in such pain that I am still in spasms and can't even move comfortably this morning despite doing my traction and PT.
How do I cope with the pain and now, possibly, having to give up who I am? Ideas? Advice? Words of comfort or inspiration?
Topic: RE: I have a few questions please help
Day-to-day life is not what it used to be for me. I am a teacher. Had RNY back in 2002. Pain, back issues, joint issues, etc. saw docs on and off for 6-7 yrs. (Was a member here years ago, but lost my old password and changed emails...) Put on some pain meds, told of degenerative disk disease, some epidurals, some PT, etc. Finally suggestion of fibro two years ago. Pain increasing last two years. Saw new - in - town rheumatologist. Extensive tests. Lupus, arthritis, Raynaud's, still back problems, osteoporosis, etc. New meds. (And here's the kicker, after getting to know her and feel confident that she had me on a path that would help, her husband was abruptly transferred, and she followed with only a few days notice!)
Weight gain about 25-30 pounds last 2 years. Due to pain my walking (main exercise) greatly diminished. Now pred. with more weight puffiness-gain. I have started the 17 Day Diet to see if I have a carb sensitivity, which I've suspected, and I am attempting to give it a go.
That's background, and probably too much. Here's the thing that toucned me. I am sitting here crying about what you said about having to quit teaching. That's who I am. BUT, I am so exhausted by noon that I feel as if I am paddling in murky and painful jello in the afternoon. I truly just collapse when I get home. Grading papers on Friday had my hands and back in such pain that I am still in spasms and can't even move comfortably this morning despite doing my traction and PT.
How do I cope with the pain and now, possibly, having to give up who I am? Ideas? Advice.
Weight gain about 25-30 pounds last 2 years. Due to pain my walking (main exercise) greatly diminished. Now pred. with more weight puffiness-gain. I have started the 17 Day Diet to see if I have a carb sensitivity, which I've suspected, and I am attempting to give it a go.
That's background, and probably too much. Here's the thing that toucned me. I am sitting here crying about what you said about having to quit teaching. That's who I am. BUT, I am so exhausted by noon that I feel as if I am paddling in murky and painful jello in the afternoon. I truly just collapse when I get home. Grading papers on Friday had my hands and back in such pain that I am still in spasms and can't even move comfortably this morning despite doing my traction and PT.
How do I cope with the pain and now, possibly, having to give up who I am? Ideas? Advice.
Topic: RE: Anyone taking Methotrexate?
Thanks Roxy:)
Yes when I got sick last year, my thyroid was also low, so I do take synthroid.
It was like a truck hit me last year. After being in the hospital for 5 days and then
following up with all the different doc's. they found thyroid, polymylagia rumatica,
fibromylagia and the lupus.
I was under alot of stress for about two years prior to my diaginois.
They say stress can kill ya.
Thanks again, for the reply.
Have a great week-end.
Colette
Yes when I got sick last year, my thyroid was also low, so I do take synthroid.
It was like a truck hit me last year. After being in the hospital for 5 days and then
following up with all the different doc's. they found thyroid, polymylagia rumatica,
fibromylagia and the lupus.
I was under alot of stress for about two years prior to my diaginois.
They say stress can kill ya.
Thanks again, for the reply.
Have a great week-end.
Colette
Topic: RE: Anyone taking Methotrexate?
I know I was put on it during a flare. I was diagnosed in 2001 after 7 years of mis-diagnosis. Fortunately for me, my lupus comes and goes now, so I normally only have flares during periods of high stress. When I do have a flare I am in a lot of pain and feel like I can barely move, let alone even stand up straight. I have learned to "try" to mentally keep a positive attitude about everything in life, even when it is bad...so my lupus does not flare as severe as it has it in the past. Don't get me wrong, I still do ache and feel fatigued all the time but nothing like during a major flare like it sounds you are going through now.
You mentioned hair loss as a concern when taking methotrexate. I'm not sure if that was one of the side effects or not
but I can tell you lupus patients are more prone to developing alopecia which is hair loss...and I do have a history of alopecia areata (if I spelled that right?) where you lose hair in little patches. So that is something to really think about and talk to your doc about if that is a concern. Perhaps you can add supplements like Calcium, Biotin, Vitamin D or there is another drug alternative?
My rheumatologist said reducing stress and trying techniques such as yoga, meditation, and massage (which I seldom do any of those) can help some people reduce symptoms.
I do not follow a special diet for the lupus, however I have heard of people that do. Diets have not been my friend, even ones to maintain health. I have yo-yo'd for 20+ years.
On a side note...if you haven't done so already, ask to see an endocrinologist. Some people, as myself, develop Hashimoto's thyroid due to the lupus...and that will cause weight gain too. A good endocrinologist, will not only check your TSH labs, but your free T3 and T4 as well as run other thyroid lab panels unlike most traditional doctors. A common misconception is just because your TSH is normal value you are ok...but I guess there is some formula they use. Anyways check out the thyroid forums you will see what I mean...cause I'm not sure how to explain it....but that could also be another underlying cause of weight gain. (and I have seen even in the regular WLS forums some people develop thyroid issues after surgery)
I completely agree with you I hated the idea of being on prednisone. It made me gain weight and made me feel like I was on an emotional roller coaster ride....angry one moment, crying the next, then lauging about what just happened.
I'm not a doctor, I just know what I have been through with lupus and my health issues. I have not had WLS (yet). Two years ago I went through the process for RNY and was denied. This time around I am hoping things work out and I am able to get the DS.
I wish I could be more help, but when I didn't see anyone else answer I couldn't leave ya hanging!
Roxy
You mentioned hair loss as a concern when taking methotrexate. I'm not sure if that was one of the side effects or not
but I can tell you lupus patients are more prone to developing alopecia which is hair loss...and I do have a history of alopecia areata (if I spelled that right?) where you lose hair in little patches. So that is something to really think about and talk to your doc about if that is a concern. Perhaps you can add supplements like Calcium, Biotin, Vitamin D or there is another drug alternative? My rheumatologist said reducing stress and trying techniques such as yoga, meditation, and massage (which I seldom do any of those) can help some people reduce symptoms.
I do not follow a special diet for the lupus, however I have heard of people that do. Diets have not been my friend, even ones to maintain health. I have yo-yo'd for 20+ years.
On a side note...if you haven't done so already, ask to see an endocrinologist. Some people, as myself, develop Hashimoto's thyroid due to the lupus...and that will cause weight gain too. A good endocrinologist, will not only check your TSH labs, but your free T3 and T4 as well as run other thyroid lab panels unlike most traditional doctors. A common misconception is just because your TSH is normal value you are ok...but I guess there is some formula they use. Anyways check out the thyroid forums you will see what I mean...cause I'm not sure how to explain it....but that could also be another underlying cause of weight gain. (and I have seen even in the regular WLS forums some people develop thyroid issues after surgery)
I completely agree with you I hated the idea of being on prednisone. It made me gain weight and made me feel like I was on an emotional roller coaster ride....angry one moment, crying the next, then lauging about what just happened.
I'm not a doctor, I just know what I have been through with lupus and my health issues. I have not had WLS (yet). Two years ago I went through the process for RNY and was denied. This time around I am hoping things work out and I am able to get the DS.
I wish I could be more help, but when I didn't see anyone else answer I couldn't leave ya hanging!
Roxy
Topic: RE: Anyone taking Methotrexate?
Thank you for your reply.
I too have SLE type of lupus.
Did the Dr. put you on the methotrexate for pain?
I am so confused as to if I should take this medication. I don't want to go back on the prednizone.
I read that you can loose you hair from taking it.
Do you follow any type of diet for the lupus. I've been reading up on it and it says that
certain foods can cause the flare ups. I am always in pain, I feel like a cripple when I get up
out of bed or up from sitting and now my upper arms.
I had the band put in 2007 and since finding out last year that I have SLE the band just isn't
the same. MY WL Dr. wants to remove the band and do a Sleeve procedure.
I did great with the band, I had lost 115lbs. and from being on the prednizone for 8months
I gained 40lbs. I am so depressed.
I too have SLE type of lupus.
Did the Dr. put you on the methotrexate for pain?
I am so confused as to if I should take this medication. I don't want to go back on the prednizone.
I read that you can loose you hair from taking it.
Do you follow any type of diet for the lupus. I've been reading up on it and it says that
certain foods can cause the flare ups. I am always in pain, I feel like a cripple when I get up
out of bed or up from sitting and now my upper arms.
I had the band put in 2007 and since finding out last year that I have SLE the band just isn't
the same. MY WL Dr. wants to remove the band and do a Sleeve procedure.
I did great with the band, I had lost 115lbs. and from being on the prednizone for 8months
I gained 40lbs. I am so depressed.
Topic: RE: Anyone taking Methotrexate?
I am a pre-op, but have taken methotrexate before...but only for a few months. I have the SLE (systemic) type of lupus. When I took it the only thing I noticed was I felt even more fatigued than I normally did and I almost completely lost my desire to eat anything. How it will affect you after WLS I'm not sure, but I hope that helps a little.
Topic: Anyone taking Methotrexate?
I was told I had lupus,polymaliga rumatica and fibromylagia last year. It has been a year
of hell. I was on prednizone for 8 months which helped and My Band did not do well
with the med. I gained 40lbs. Doc put me on Plaquinel, first 200mg then 400mg.
When she added the 200mg I started itching, so back down to 200mg.
I am in so much pain in my upper thighs, hips and now my upper arms.
She wants to put me on methotrexate has anyone taken this and what are the side effects.
Any help is appreciated.
of hell. I was on prednizone for 8 months which helped and My Band did not do well
with the med. I gained 40lbs. Doc put me on Plaquinel, first 200mg then 400mg.
When she added the 200mg I started itching, so back down to 200mg.
I am in so much pain in my upper thighs, hips and now my upper arms.
She wants to put me on methotrexate has anyone taken this and what are the side effects.
Any help is appreciated.
(deactivated member)
on 3/21/11 1:40 am - California, TX
on 3/21/11 1:40 am - California, TX
Topic: RE: Any lupies out there who had the DS?
Hello all, Here is the information about the surgeon but I want to ask about zija as it is good for health as taken as supplement.
Zija
Zija
Topic: RE: lap band with Lupus
(It's long but there's a point for all the background)
I got the LB in April 2008 and it was great for a while and I lost about 55 lbs total, fairly easily. By September of 2009 I started having problems with it being too tight. I could eat very few things and liquid gurgled. They took all the fluid out to try and figure out what was going on, it helped very little. They believed my band had been overfilled and had irritated my stomach. So I was unfilled for a few months but it didn't make a difference. By January 2010, I had had upper GI's all kinds of tests, they decided to do a revision. I was excited to hopefully be able to use my band again. When they went in there was an "extreme" amount of scar tissue all the way around the band and down to my liver. They cleared everything out and found the band was in perfect position so they didn't mess with it at all. We took it very slow in putting fluid back in, starting sometime in May I believe it was with just a little. By July 27th, I could no longer eat solid foods, even with all the fluid removed again. Plain yogurt was too thick to go down. It was taking a toll on me emotionally and physically as I could not eat at all. I drank liquids, whatever i could find that worked and I was soooo hungry. After another upper GI and an endoscopy they felt it was best to take the band out and at that point, I agreed. I couldn't take it any longer. It was removed on September 3rd, 2010 and the dr. was stunned that it seemed my body was rejecting the band as scar tissue had reformed around the band but nowhere else. It took about a month to be able to eat regular food again and not feel like everything was getting stuck even with no band.
On November 24th, I became very very sick, inexplicable pain, and was completely immobile. After being in the hospital I was diagnosed with lupus. That alone explained why my body had rejected the band. I was then put on massive doses of Prednisone (150mg/day), which I was thankful for because it allowed me to walk again. I'm finally down to 10mg/day and the next step will be off of it. I've gained about 80 lbs since December. I trying to keep that in perspective.
Go with your surgeon's advice. If they say no, don't go with it. I was undiagnosed and spent a year and a half unable to use the band as it should have worked.
Good luck with whatever you decide to do..... :)
I got the LB in April 2008 and it was great for a while and I lost about 55 lbs total, fairly easily. By September of 2009 I started having problems with it being too tight. I could eat very few things and liquid gurgled. They took all the fluid out to try and figure out what was going on, it helped very little. They believed my band had been overfilled and had irritated my stomach. So I was unfilled for a few months but it didn't make a difference. By January 2010, I had had upper GI's all kinds of tests, they decided to do a revision. I was excited to hopefully be able to use my band again. When they went in there was an "extreme" amount of scar tissue all the way around the band and down to my liver. They cleared everything out and found the band was in perfect position so they didn't mess with it at all. We took it very slow in putting fluid back in, starting sometime in May I believe it was with just a little. By July 27th, I could no longer eat solid foods, even with all the fluid removed again. Plain yogurt was too thick to go down. It was taking a toll on me emotionally and physically as I could not eat at all. I drank liquids, whatever i could find that worked and I was soooo hungry. After another upper GI and an endoscopy they felt it was best to take the band out and at that point, I agreed. I couldn't take it any longer. It was removed on September 3rd, 2010 and the dr. was stunned that it seemed my body was rejecting the band as scar tissue had reformed around the band but nowhere else. It took about a month to be able to eat regular food again and not feel like everything was getting stuck even with no band.
On November 24th, I became very very sick, inexplicable pain, and was completely immobile. After being in the hospital I was diagnosed with lupus. That alone explained why my body had rejected the band. I was then put on massive doses of Prednisone (150mg/day), which I was thankful for because it allowed me to walk again. I'm finally down to 10mg/day and the next step will be off of it. I've gained about 80 lbs since December. I trying to keep that in perspective.
Go with your surgeon's advice. If they say no, don't go with it. I was undiagnosed and spent a year and a half unable to use the band as it should have worked.
Good luck with whatever you decide to do..... :)
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