Recent Posts
Topic: RE: sjogren's syndrome
thanks lou...i don't know what i have rheumy told me i don't have scleroderma(just by looking at me?) when in past 2 other md thought i did have sclerloderma so i will gladly accept sjogrens and lupus...but like i said i am soooo sore in joints and MUSCLES like deltoid area and side of hip from waist down to "saddlebag" area neck shoulders blah blah blah...but to top it all my anti phospholipid gave me blood clot in head in2005 ..my neuro md says no nsaids ...they increase pressure in head ...i have increased liver enzymes so no tylenol so since 2005 i've had noooo pain med of any sort i weigh 230 lbs and am on scedule for sleeve within 1-2 months so weight loss should help some?
Topic: RE: sjogren's syndrome
Unfortunately there are about a million things that could be leading to your discomfort. Lucky for me I have autoimmune diseases out the wazoo in my family and know a little bit about it. Pretty much any autoimmune disease will cause joint pain. Sjogren's goes hand-in-hand with it. My sister has Sjogren's and she has had the run-around with Lupus, Connective Tissue Disease, etc. I think we have finally narrowed it down to Sjogren's, Lupus, and some gluten intolerance <= check out the gluten stuff- it is really interesting and can account for a LOT of the symptoms associated with autoimmune disease! When she cuts out gluten her life improves drastically. Unfortunately she's a sucker for the good stuff- bread, chips, cookies, basically all the yummy stuff. Anyway, a flare doesn't have to be horrible and debilitating. Some people's "flares" just make them feel run-down. That's all I've experienced so far- I supposedly have Lupus but I have re-diagnosed myself with Fibromyalgia.
I feel lucky because after reading this forum I'm thinking I've got it pretty good. At the same time I feel guilty because I still have aches and complain- but compared to a lot of the people on here it's minor.
I hope this helps :)
I feel lucky because after reading this forum I'm thinking I've got it pretty good. At the same time I feel guilty because I still have aches and complain- but compared to a lot of the people on here it's minor.
I hope this helps :)
Topic: RE: sjogren's syndrome
i definitely have antiphospholipid syndrome.. i guess that might be primary..years ago i had positive ana and high sed rate md thought i had scleroderma...today i have neg ana ...SSa test normal range is 0-0.9 my number is 8...seems i find on computer search that is indicative of sjogrens and lupus...am due to see rheumy in3-4 weeks
Topic: RE: sjogren's syndrome
I have Sjogren's and lupus. Well, okay, my current rheumie isn't so sure about the lupus and instead chooses to call is "unspecified connective tissue disease". I believe for most patients Sjogren's is a secondary diagnosis with some other autoimmune disease being primary. Sjogren's causes joint and muscle pain just as lupus and other autoimmune diseases do. And it can be just as severe...depends on the individual.
Topic: sjogren's syndrome
i just had labs done that look like i have sjogren's...i have the eye and mouth dryness parotid gland infections.. definite autoimmune with antiphospholipid syndrome but i hurt in my muscles and joint so bad but i don't think it is as bad as i hear people with fibro or "lupus flare" any body out there have sjogren's ? and do you have pain?
Topic: Got a call =)
Just wanted to share, I got a call to meet my surgeon on Thursday and to have alittle class on what to expect after surgury....I might be looking at a date for next month...woohoo..All I can say, its about time I get my pass =) Over a year I have been coming to OH to see people getting the "OK" everyday, but I sit and wait =( Not anymore..woohoo
Topic: RE: questions
I was going through years of tests for lupus. Because of not having that diagnosis I guess no one opossed me. I also live where it is still new to be okay with WLS but I got most to be okay with me wanting it. I had the RNY done laproscopically. Since I have not suffered from any complications or any problems that I had before. It's amazing truly. I don't have any health concerns or problems other than some skin issues time to time. That can only help me get skin removal I suppose. I have lost over 160 lbs and going still to this day. It will soon be my 2 yr celebration!!! I encourage the RNy and have seen too many succeed to it compared to the band. I know the band is more a marketing tool and most surgeons know it and can't say how they truly feel with out feer of being sued. I would say that if you feel WLS is best, give a shot! I have so much to be thankful for now, truly.
Topic: RE: questions
I haven't heard of that...sounds too close to the DS procedure. At least it sounds too close for my comfort. And if it's not common, you may be hard pressed to find a surgeon willing to do it.
Good luck!
Good luck!
Topic: RE: questions
Thanks. By having a gastric sleeve and then the rest like an RNY I mean having the doctor do the bypass of the intestine like they do with the RNY. It would be a modified RNY. I have heard of it being done but it is not common.
Topic: RE: questions
If your rheumatologist is on-board with you have WLS, there should be no reason why you can't have surgery. About 5 years ago, I asked my rheumie and he said "no way" and the subject was dropped. In early 2008, I thought about it again...had a new rheumie. He was completely on-board.
You should not have a lap-band. According to the manufacturer's recommendations, if you or a relative have any autoimmune disease, the lap-band is contraindicated. That said, I did have a WLS tell me he had no problem with "off-label" use of the lap-band on me. "I" wasn't comfortable with the off-label usage of it. And was never really interested in the lap-band anyway. And there are people with lupus on this board who have had lap band and been fine.
With RNY, you CANNOT take NSAIDS or STEROIDS, which would mean you would have to give up your prednisone. Also, if you take anything for pain that isn't acetaminophen based (i.e. Advil, Aleve, Excedrin, etc) you would have to stop that too. I was told by my surgeon if I needed one of the "no-no" drugs, I could potentially take it for a VERY SHORT PERIOD of time with the use of a proton-pump inhibitor and that would be okay. So, for lupus pain relief, I've switched from ibuprofen to darvocet.
If you truly can't give up your prednisone, you might want to look at the sleeve. It's is a purely stomach surgery and might be the best choice. I considered it due to the lupus issues, but had my heart set on the RNY...and couldn't do the sleeve anyway, as it turned out, because my insurance wouldn't cover it.
You mention the sleeve with the "rest done like the RNY". Are you referring to the DS? The worst choice for a lupus patient especially! I have very mild kidney issues and it's even questionable if they are lupus related. My nephrologist NEVER would have allowed me to have the DS due to potential kidney issues. As lupus patients, we are already prime breeding ground for kidney problems. Most lupus organ involvement begins at the outset of the disease. But the kidneys can become affected at any time during a lupus patient's life. In other words, you can live with lupus for 20 years without kidney involvement and then wham, have lupus related kidney issues. Most DS patients aren't aware, but my understanding is the DS comes with a higher risk of kidney issues than the other WLS.
I hope I've provided you with some helpful information. The most important thing I would tell you is that you need to discuss WLS with your rheumatologist and any other specialists you have before moving forward. All my doctors were amazing. I decided I wanted surgery and 1-by-1, I went to each doctor to ask permission. They were all on board. They all wrote beautiful letters for my insurance company on why this surgery was a medical necessity. And they all said we would be monitoring everything and adjust meds accordingly (like switching to prescription Darvocet so I could stop the ibuprofen). I'm the closes****ched WLS patient I know. And when my white blood cell count dropped below normal limits, I was immediately sent to a hematologist. It appears to be benign and just related to the lupus, but there was no wasting time...they wanted it checked out immediately.
Good luck on your journey!
Elli
You should not have a lap-band. According to the manufacturer's recommendations, if you or a relative have any autoimmune disease, the lap-band is contraindicated. That said, I did have a WLS tell me he had no problem with "off-label" use of the lap-band on me. "I" wasn't comfortable with the off-label usage of it. And was never really interested in the lap-band anyway. And there are people with lupus on this board who have had lap band and been fine.
With RNY, you CANNOT take NSAIDS or STEROIDS, which would mean you would have to give up your prednisone. Also, if you take anything for pain that isn't acetaminophen based (i.e. Advil, Aleve, Excedrin, etc) you would have to stop that too. I was told by my surgeon if I needed one of the "no-no" drugs, I could potentially take it for a VERY SHORT PERIOD of time with the use of a proton-pump inhibitor and that would be okay. So, for lupus pain relief, I've switched from ibuprofen to darvocet.
If you truly can't give up your prednisone, you might want to look at the sleeve. It's is a purely stomach surgery and might be the best choice. I considered it due to the lupus issues, but had my heart set on the RNY...and couldn't do the sleeve anyway, as it turned out, because my insurance wouldn't cover it.
You mention the sleeve with the "rest done like the RNY". Are you referring to the DS? The worst choice for a lupus patient especially! I have very mild kidney issues and it's even questionable if they are lupus related. My nephrologist NEVER would have allowed me to have the DS due to potential kidney issues. As lupus patients, we are already prime breeding ground for kidney problems. Most lupus organ involvement begins at the outset of the disease. But the kidneys can become affected at any time during a lupus patient's life. In other words, you can live with lupus for 20 years without kidney involvement and then wham, have lupus related kidney issues. Most DS patients aren't aware, but my understanding is the DS comes with a higher risk of kidney issues than the other WLS.
I hope I've provided you with some helpful information. The most important thing I would tell you is that you need to discuss WLS with your rheumatologist and any other specialists you have before moving forward. All my doctors were amazing. I decided I wanted surgery and 1-by-1, I went to each doctor to ask permission. They were all on board. They all wrote beautiful letters for my insurance company on why this surgery was a medical necessity. And they all said we would be monitoring everything and adjust meds accordingly (like switching to prescription Darvocet so I could stop the ibuprofen). I'm the closes****ched WLS patient I know. And when my white blood cell count dropped below normal limits, I was immediately sent to a hematologist. It appears to be benign and just related to the lupus, but there was no wasting time...they wanted it checked out immediately.
Good luck on your journey!
Elli