Is Anyone Else Dealing With Lupis, Or Any Other Autoimmune Disease? Please Help!

[LauraTarry 25]

Hello all. So I have Lupis as well as Fibromyalgia! I have been trying not to think of it in regards to my surgery. However, in the back of my mind, there is the fear that having surgery will cause a flare up! I had to go off of my Plaquinil for a month, until after my surgery, which is July 10th. Its been about two weeks and I've been good until last night!!! I could feel the rain coming, my joints have been aching. And my hips are absolutely killing me! Like to the point of tears, and it takes a LOT to make me cry. My hands and arms/elbows are hurting not from typing, I have to keep stopping. I stopped taking the Plaquinil once before for a week, and it felt like I hit a wall going 90mph! That time it affected my hands and elbows and shoulders first, then I was curled up in the fetal position in so much pain I could barely think! And now its started again! Calling the doctor in the morning. And I guess they will increase pain meds, but I have done that for the last two nights and it hasn't helped! And I can't even take motrin! I want to pull my hair out! I am afraid if the increase my meds now, will they be able to control my pain after surgery? I have two little boys to take care of!! I will be staying at my parents after surgery for the first two weeks, but I can't let them do everything! My guys can wear the most entergetic people out! Getting a little upset about this tonight! I told my surgeon that nothing about the surgery scared me at all, the only thing that scared me was coming off my Plaquinil! And he said "for good reason"! AAAHHHHHHHH anyone else dealing with these issues? I could really use some support! Can't wait to get it over with and go back on my meds!!!!! And scared they will try to put me back on steroids, which have contributed to my weight gain over the last two years! Hurting, nervous, upset!

[karenb4729 309]

You want to talk to MinaT - she has lupus. You can send her a private message.

[babygirl_sandy 85]

I have lupus, fibromyalgia, sjogrens and alot more great autoimmune problems and neither my surgeon or my Dr have said that I have to stop my Plaquenel at any point before surgery.. Only the day of surgery.. I know how you feel cause it took my Dr two years to figure out my medication regimen that would work for me and help with the pain.. I hope you get through this cause I feel your pain!! Gd luck..

Sent from my SPH-D710 using VST

[LauraTarry 25]

Hey Sandy. Thanks girl. Yeah I have Sjogrens too, which makes me a little nervous about the not drinking while you eat! Sometimes its so bad I drink and drink and it never feels like my throat is wet! So annoying! My surgeon would not budge on the Plaquenil! He said absolutely have to stop taking it! Even my Rheumatologist called them and said he though I should still take it! It's not easy! Its raining here, which is making everything hurt worse! When do you have your surgery? How are you dealing with all of this?

[babygirl_sandy 85]

Hey Sandy. Thanks girl. Yeah I have Sjogrens oo' date=' which makes me a little nervous about the not drinking while you eat! Sometimes its so bad I drink and drink and it never feels like my throat is wet! So annoying! My surgeon would not budge on the Plaquenil! He said absolutely have to stop taking it! Even my Rheumatologist called them and said he though I should still take it! It's not easy! Its raining here, which is making everything hurt worse! When do you have your surgery? How are you dealing with all of this?[/quote']

Hey Laura,

Sorry to hear your surgen was not ok with you're meds.. Mines felt I didn't need more stress on my body before or after surgery..

I'm finishing up all my pre_op so I should Have a date soon.. I know how you feel I carry an acrylic cup with me every where.. I notice that if i'm having Soup or very i'm mean very moist meat I can stay away from drinks during dinner.. But other than that I've set an alarm on my phone that tells me when I can drink to basically train myself.. It help lots.. I also drink Vitamin Water and that's helped with the sjogrens thirst.. Just have to watch the sugar intake.. I also use Biotin products and they help.. I think if we cook our foods moist we should be ok, I plan on trying some recipes cause we don't only have to worry about our sleeve after surgery.. I hope you feel better soon.. Soft hugs your way..

Sent from my SPH-D710 using VST

[madintx 12]

I have connective tissue disorder , fibromyalgia, sjogrens, hasimoto, and most of my problems are autoimmune related ...the doctor told me that after surgery, i would have to call him before going back to steroids for a pill that helps with the effects of the meds in the stomach. other than that, I am good to go... by the way, my surgery was on the 3rd and pain has been good, not bad at all.

[Pre-OpLoser619 36]

I also have fibro and some type of unknown autoimmune issues. I am on plaquenil and am dreading for them to tell me I have to stop it! I really hope they don't. I've read several articles on the web that say it isn't necessary to stop it. I hate to say it, but I may continue anyways. There is a gal on here that was able to continue hers and she was fine. I missed my fibro for a couple days once and oh how I hurt! Hope everything works out ok with you!

[madintx 12]

u should be able to take them , except for one or two day ... i should be back on mine already ... i have to break it down..

[Heyher 581]

I am on a new oral therapy for MS and I hope I don't have to stop taking it for more then a day or two. If I miss more then two weeks I have to go back to the neurologist for observation because on side effect is my heart slowing to a stop... :-(

[LauraTarry 25]

Wow ladies!! I hate you are all dealing with these issues, but I'm glad I'm not alone in this! The surgeon made me stop my plaquinil so my pain management dr increased my Loritab. I had to do blood work three times before surgery, (which is in two days!! woot woot!) I was scared he would test to see if I was still taking my plaquinil and cancel my surgery. that's the only reason I didn't keep taking it. But I probably could have!! I had a few days that were really bad with the pain, I couldn't move my hands and everything hurt! He said I could resume taking the meds about two weeks after surgery. I am just a little afraid that the stress of the surgery on my body will bring on a bad flare! For the most part I have been ok, don't want to say that too loudly, know what I mean?! Madintx, so glad you're doing ok after surgery!!! How is it going? I am most afraid of pain and nausea afterwards! The surgeon says he will keep it under control, but... you know how they all say that! I am really excited!! Hope ALL of you are doing ok, good luck!!! And glad to find all of you on here, its really important to have support, and someone who knows how you feel! Much love and well wishes!!

[clk 3,519]

I just want to thank the OP and all of the other posters for their contributions to this thread. My mother has lupus and would like the sleeve but is worried about not only going off the meds but finding a new protocol to work as she loses weight and adjusts dosages.

I'd really love it if you ladies could keep coming back here to update with your progress so I can show her it's possible to do this. She's watching my new life from the sidelines, afraid to jump in herself.

I do have one question: how did you go about finding a surgeon? Did you simply let the surgeon you selected know you were higher risk? My mother is on warfarin (coumadin) and is very concerned about having another surgery. She had an aortic aneurysm in 2010 that left her wheelchair bound for more than a year, and she's still experiencing neuropathy and uses braces and a walker to walk. I'm sure her case is a bit more drastic than some, but I'm curious to hear about how you went about selecting your surgeons and preparing for surgery.

Best to all of you,

~Cheri

[madintx 12]

that was one of my biggest concerns ... i went to the endocrinologist, rheumatologist, hematologist, lupus skin specialist and so on... they all told me that other than the clotting issues i have, it was going to be good for me .... compare to all the other issues i was going to have related to my history such as highblood pressure, heart problems, stroke, blindness etc associated with diabetes which runs very strong in my family. they all agreed and said : "go for it"!!!! i have no doubt in my mind that i did the right thing for me . i am going through blood thinner injection treatment for 10 days ... other than that we are ok!! =-)

[madintx 12]

i dont know how to use the tickers or whatever ... =-(

[alley-gator 96]

I have an unidentified ct disorder too, and I am looking into surgery. I am pretty worried about the fact that some docs wont ever let you back on nsaids since that's what I live on! I am in my 6 month diet now & hoping I can be sleeved in Dec.

[Pre-OpLoser619 36]

I just want to thank the OP and all of the other posters for their contributions to this thread. My mother has lupus and would like the sleeve but is worried about not only going off the meds but finding a new protocol to work as she loses weight and adjusts dosages.

I'd really love it if you ladies could keep coming back here to update with your progress so I can show her it's possible to do this. She's watching my new life from the sidelines' date=' afraid to jump in herself.

I do have one question: how did you go about finding a surgeon? Did you simply let the surgeon you selected know you were higher risk? My mother is on warfarin (coumadin) and is very concerned about having another surgery. She had an aortic aneurysm in 2010 that left her wheelchair bound for more than a year, and she's still experiencing neuropathy and uses braces and a walker to walk. I'm sure her case is a bit more drastic than some, but I'm curious to hear about how you went about selecting your surgeons and preparing for surgery.

Best to all of you,

~Cheri[/quote']

I really just chose the surgeon according to their qualifications. I imagine with their specific clientele they are used these types of issues. I would just make sure all of her docs/specialists are on the same page as to ensure her the best care and outcome!