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CheekyMonkey has deleted this message.
Topic: RE: Hello
Hi All,
I am sooooo glad to get responses from you all! I sometimes feel soooo alone in all of this. I have a ton of support but no one really understands. I have been on methoxtrexate but had to be taken off because I have COPD, and you cannot use it with lung disease. I am on plaqunil and have been taking it for the last 3 years. I am also on Imuran and that is what they just upped the dose on to try to get my flair under control instead of steroids. We had discussed Lyrica about 6 months ago but there is a risk of severe weight gain so I did not want to take that chance and fortunately my doc. agreed. I'm sure different people react differently, but with my luck I would balloon up even more. My doc will not give me "sulfa" drugs because of a reaction risk like Stevens Johnson's Syndrom, so I don't know if that is the same as "sulfer" based drugs. I am on permanent disability and so I get medicare. I don't know if medicare would cover the sleeve, maybe that is why my doc only touched on that briefly. There is so much to take in so I really don't remember why he only recommended bypass but I will find out on the 30th. I have "brain fog" a lot and memory problems so once I found out what he recommended I only focused on that so I could retain it. I went to a swl meeting last night and it reminded me that some of your meds you have to crush up. I remember reading on some of my meds that they cannot be crushed so that is one more thing I have to bring up. I take about 20 meds, multiple times a day, so I will have to go back and read all of the pharmacy info that comes with them. Have any of you had a flair since your surgery? Has anyone had to get the IV steroids? Thanks again everyone for responding. It has been very difficult to find info on life after surgery with a lupus patient. Hope to talk with you all soon.
Kathy
I am sooooo glad to get responses from you all! I sometimes feel soooo alone in all of this. I have a ton of support but no one really understands. I have been on methoxtrexate but had to be taken off because I have COPD, and you cannot use it with lung disease. I am on plaqunil and have been taking it for the last 3 years. I am also on Imuran and that is what they just upped the dose on to try to get my flair under control instead of steroids. We had discussed Lyrica about 6 months ago but there is a risk of severe weight gain so I did not want to take that chance and fortunately my doc. agreed. I'm sure different people react differently, but with my luck I would balloon up even more. My doc will not give me "sulfa" drugs because of a reaction risk like Stevens Johnson's Syndrom, so I don't know if that is the same as "sulfer" based drugs. I am on permanent disability and so I get medicare. I don't know if medicare would cover the sleeve, maybe that is why my doc only touched on that briefly. There is so much to take in so I really don't remember why he only recommended bypass but I will find out on the 30th. I have "brain fog" a lot and memory problems so once I found out what he recommended I only focused on that so I could retain it. I went to a swl meeting last night and it reminded me that some of your meds you have to crush up. I remember reading on some of my meds that they cannot be crushed so that is one more thing I have to bring up. I take about 20 meds, multiple times a day, so I will have to go back and read all of the pharmacy info that comes with them. Have any of you had a flair since your surgery? Has anyone had to get the IV steroids? Thanks again everyone for responding. It has been very difficult to find info on life after surgery with a lupus patient. Hope to talk with you all soon.
Kathy
Topic: Lupus and verticle sleeve
Lupus and verticle sleeve surgery is it safe enough.Also did anybody get one and doing fine.
Topic: RE: Hello
At first I applied for a bypass and was told that a bypass and band were out of the question because it messes with the esphogus too much, that I could get a sleeve. I was told that I would still be able to take all of my meds in their solid form. I am on Methotrexate and Plaquenil among as few others. I was on steriods for awhile but recently I was switched over to Lyrica. I loved the steriods, took away all pain..LOVED it!! Lyrica took abit to work but is doing the job, my only problem with Lyrica is the price..very very expensive. I have heard from others that the surgeon will give a double shot of steriods to stop or try to stop any kind of a flare up.
It is great to have a couple of people going through the same stuff =)
Hope I could help alittle =)
Cathy
It is great to have a couple of people going through the same stuff =)
Hope I could help alittle =)
Cathy
Topic: RE: Hello
Highest Weight/Surgery Weight/Current Weight/Goal
426.4/356/216.8/165?
Welcome to the Lupus board. It's not very active around here, but I check in every now and again. My insurance is changing in January, and my employer removed the exclusion from this particular policy choice. With a little luck, I'll be having my surgery in February/March. I'm jumping through the "hoops" now.
My new rheumatologist (just started using him a little over a year ago after my previous rheumie got severely ill and closed his practice) doesn't say I have lupus anymore (not that it's gone away...he's just renamed it, he's not 100% convinced)...he uses the term Unspecified Connective Tissue Disease (UCTD) and I also have Sjogren's Syndrome. He's all for the weight loss surgery and he's okay with the bypass (the nephrologist wasn't so sure, but my insurance won't pay for the sleeve). I've never been on steroids because of my weight...I've always taken Plaquenil. Unfortunately, in August, after 10 years, we had to stop the Plaquenil due to eye toxicity. I just saw the rheumie yesterday for the 1st time since stopping the med and asked what our next choice was. I'm not flaring (thankfully) but I do have some achy days. I have way too much on my plate and I can't have 1-2 "bad" days a week. We talked methotrexate (which can be done by injection...bypass the stomach...good for a flare - hint, hint). But the jump from plaquenil to methotrexate is a very large jump. I really thought I needed an inbetween jump. So, I have to pick up my RX this afternoon for azulfidine. It's a sulfur drug that can be taken with RNY. Don't suppose you have any experience with this drug?
Anyway, if your rheumatologist and surgeon will work together, I think you will find you will be just fine.
-Elli
My new rheumatologist (just started using him a little over a year ago after my previous rheumie got severely ill and closed his practice) doesn't say I have lupus anymore (not that it's gone away...he's just renamed it, he's not 100% convinced)...he uses the term Unspecified Connective Tissue Disease (UCTD) and I also have Sjogren's Syndrome. He's all for the weight loss surgery and he's okay with the bypass (the nephrologist wasn't so sure, but my insurance won't pay for the sleeve). I've never been on steroids because of my weight...I've always taken Plaquenil. Unfortunately, in August, after 10 years, we had to stop the Plaquenil due to eye toxicity. I just saw the rheumie yesterday for the 1st time since stopping the med and asked what our next choice was. I'm not flaring (thankfully) but I do have some achy days. I have way too much on my plate and I can't have 1-2 "bad" days a week. We talked methotrexate (which can be done by injection...bypass the stomach...good for a flare - hint, hint). But the jump from plaquenil to methotrexate is a very large jump. I really thought I needed an inbetween jump. So, I have to pick up my RX this afternoon for azulfidine. It's a sulfur drug that can be taken with RNY. Don't suppose you have any experience with this drug?
Anyway, if your rheumatologist and surgeon will work together, I think you will find you will be just fine.
-Elli
Highest Weight/Surgery Weight/Current Weight/Goal
426.4/356/216.8/165?
Topic: RE: Hello
Hi ya Cath,
Thanks for your response. I did notice that it had been a while since anyone posted, so thank you for checking. haha. I have lupus, COPD, and prone to blood clots thanks to the lupus. I am hoping to have gastiric bypass in March if all goes well. I have to do a 6 month weight study for my insurance co and I am on month 4. My bypass surgeon has had me go to a hemotologist, gastro, pulmonary, and wants a letter from my rheumy. I haven't even started the required test that everyone else has to have. lol. I see my rheumy every 12 weeks and was hoping to get an approval letter from her this past fri. No go. My sed rate is staying at 50 So she upped my meds, trying to keep me off steroids. Then she confronted me with what I plan to do when I go into a flair after surgery since I cannot take steroids and NSAIDS. It was more concern than confontation I should say. She brought up getting IV steroids. So then I called my bypass surgeon's office and noone could answer the question so now I have a "special" appointment with him on 12/30. I am not a canidate for the band because my reflux is so bad. I have to have an endoscopy next Monday. My surgeon and I briefly spoke of the sleeve but then he said he thought bypass would be my best option. Oh who knows, I think we all just got so wrapped up in how much better I would feel and all the things we had to get out of the way, hemo, pulm, etc. that we forgot that lupus does not go away! So, when you get a chance, can you explain to me the way you understand the sleeve? That way when I see the doc on the 30th maybe I can bring it up. Thanks sooo much.
Have a great day,
Kathy (Yes that is my real name too!)
Thanks for your response. I did notice that it had been a while since anyone posted, so thank you for checking. haha. I have lupus, COPD, and prone to blood clots thanks to the lupus. I am hoping to have gastiric bypass in March if all goes well. I have to do a 6 month weight study for my insurance co and I am on month 4. My bypass surgeon has had me go to a hemotologist, gastro, pulmonary, and wants a letter from my rheumy. I haven't even started the required test that everyone else has to have. lol. I see my rheumy every 12 weeks and was hoping to get an approval letter from her this past fri. No go. My sed rate is staying at 50 So she upped my meds, trying to keep me off steroids. Then she confronted me with what I plan to do when I go into a flair after surgery since I cannot take steroids and NSAIDS. It was more concern than confontation I should say. She brought up getting IV steroids. So then I called my bypass surgeon's office and noone could answer the question so now I have a "special" appointment with him on 12/30. I am not a canidate for the band because my reflux is so bad. I have to have an endoscopy next Monday. My surgeon and I briefly spoke of the sleeve but then he said he thought bypass would be my best option. Oh who knows, I think we all just got so wrapped up in how much better I would feel and all the things we had to get out of the way, hemo, pulm, etc. that we forgot that lupus does not go away! So, when you get a chance, can you explain to me the way you understand the sleeve? That way when I see the doc on the 30th maybe I can bring it up. Thanks sooo much.
Have a great day,
Kathy (Yes that is my real name too!)
Topic: RE: Hello
Hi there CheekyMonkey =)
There hasn't been may posts on this board for awhile, i keep coming to look...I can try to answer something if you wanna try me =) I have Lupus, Fibro, RA everything has been at bay since February =) Now I am on the journey for a VSG. Every surgeon is different and have their own idea what surgery is right for everyone. I was told I cold not have a bypass or a band but I could have the VSG, this way I am not restricted by what meds I can and can't take.
Hope I can help.
Cathy
There hasn't been may posts on this board for awhile, i keep coming to look...I can try to answer something if you wanna try me =) I have Lupus, Fibro, RA everything has been at bay since February =) Now I am on the journey for a VSG. Every surgeon is different and have their own idea what surgery is right for everyone. I was told I cold not have a bypass or a band but I could have the VSG, this way I am not restricted by what meds I can and can't take.
Hope I can help.
Cathy
Topic: Hello
Hi, I am new to the board and just wanted to say Hello. I have a ton of questions and have been doing a lot of research. Look forward to speaking with you all. Have a grea day.
Topic: RE: Flaring
Sphinxy-
Yes ma'am! Couldn't live without Dr. Pai (pronounced like "pie", and yes he's just as sweet.)
I get a spinal for back pain (more prevalent since I gained weight on prednisone. Not taking that crap anymore!)
I was taken off plaquenil when my vision began to blur, but I'm considering getting back on, since my Opthalmologist said there were no changes from my baseline testing.
It did help me to live a more normal life. Fewer flares by far. And I have a double whammy with lupus and fibro!
Sphinxy-
Yes ma'am! Couldn't live without Dr. Pai (pronounced like "pie", and yes he's just as sweet.)
I get a spinal for back pain (more prevalent since I gained weight on prednisone. Not taking that crap anymore!)
I was taken off plaquenil when my vision began to blur, but I'm considering getting back on, since my Opthalmologist said there were no changes from my baseline testing.
It did help me to live a more normal life. Fewer flares by far. And I have a double whammy with lupus and fibro!
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