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Topic: hi there
So here is my delima.
I have high positive ANA's since I was 18. I had Gastric Bypass Surgery last october and since then I've had several pain flares that one dr has even considered to be Fibromaylgia. I also am sensitive to sunlight, and get rashes all over my arms and hands when exposed but, no butterfly rash. I also have had joint pain for years. The drs always told me that it was false positives but, this dr is refering me to specialists because the ana is positive once again. He feels that it is lupus. Im scared because I don't know what to expect, and do know that the number one treatment route is anti inflammatories, which you are not supposed to take.. I have 2 small children at home and my husband is active duty Navy and is gone all the time. any advise, stories, ect that you can share, I'd appreciate.
Topic: RE: Heart arrithyima(sp)
Have avoided the diagnosis so far... but have had some tachycardia. Sometimes I have noticed that it usually happens when my potassium is low.... have you had labs recently??? Also, is your rheumatologist involved in these decisions... I have found that sometimes a little low dose (10 or less) steroids seems to wipe this out... and that it is the side effect of pericarditis or something else lupus related???
Good luck.... Hang in there diva!
B
Topic: RE: Flaring
Thanks for the reminder.... perhaps it is time to rejoin the plaquenil group?
Just so, so, sick of being in pain. Anyone out there tried going to a pain specialist to deal with lupus issues?
b
(deactivated member)
on 9/1/05 9:47 am - syracuse, NY
on 9/1/05 9:47 am - syracuse, NY
Topic: Heart arrithyima(sp)
I found out yesterday that I have a heart arrthyima (the tachycardia type) A couple of weeks ago my heartbeat was so fast that I couldnt catch my breath and was feeling worn out all the time. They had me wear a holter monitor (portable ekg) home for a couple of days and did my blood work. So they have got me on a Beta-blocker and an anti-adrenlin drug. It seems to be working I am feeling pretty good today
Dose anyone else have this problem ?
Dose anyone else have this problem ? (deactivated member)
on 9/1/05 9:39 am - syracuse, NY
on 9/1/05 9:39 am - syracuse, NY
Topic: RE: Flaring
I am on plaquneil cause I refuse to take the steroids
so afraid of the side affects that they have.
My rhuemy wanted me to try cytotoxin(sp?) or Imuran(sp?) told her I would have to think about it. I am afraid of the side affects these kind of drugs have. I tink it would have to come down to a life and death situation before I agree to steroid treatment or any of those other high potency drugs. I'll just deal with my lupus problems as best as I can 
so afraid of the side affects that they have. My rhuemy wanted me to try cytotoxin(sp?) or Imuran(sp?) told her I would have to think about it. I am afraid of the side affects these kind of drugs have. I tink it would have to come down to a life and death situation before I agree to steroid treatment or any of those other high potency drugs. I'll just deal with my lupus problems as best as I can Topic: Flaring
Ok guys.... I don't exactly know what to do....
when I stay at home on disability my labs are great! picture perfect!!! When I resume normal activity.... the toilet... already had to have 3 iron infusions IV.... feel like ka ka... only thing that made me feel better was the IV steroids the dentist used to take out my wisdom teeth!!!
how do I keep my lupus under control without the steroids??
B
Topic: RE: Hepatitis B Vaccine
I think that there is also a relationship between the two though I am not certain that it is a direct causative one. I find some similar reactions with any immunizations - including TB tests etc. It makes sense though, since anything that stimulates the immune system would wreak havoc for us --- even echinacea seems to get me in trouble --- have to be careful, especially with any alternative remedies --- people generally think of lupus as an autoimmune disorder and treat to strengthen the immune system.
B
Topic: RE: A couple of questions
Hi Lauren,
Sorry.. have not been to the board in a while so did not see your post. I was on Plaquenil before surgery but stopped after surgery at my rheumy's recommendation. It appears that plaquenil can often cause nausea and GI discomfort so he did not want to add to this issue. I had been on the drug for at least 3 yrs so he also felt the effects of the plaquenil would last long after I stopped taking it. To this date I ahve not restarted the plaquenil.
I did not have the anti-cardio, but I do suggest you get your surgeon and your rheumy on the same page. Fortunately i have a wonderful PCP who coordinates all my care and this keeps everyone working toward the same goal - good health for me. I let my rheumy know long before I even had surgery that I was going to do it so we could wean on the steroids and get off the anti-inflammatories etc. Interestingly enough, while home recovering from surgery my lupus went totally into remission - I had great levels of everything like I have never had before!!
B
Topic: A couple of questions
I never knew this board existed! I am scheduled for surgery in just over a month. Currently I am on Plaquenil once a day and Sulindac (an anti-inflammatory) once a day. I know I will have to quit taking the Sulindac after surgery, but do any of you still take Plaquenil?
My other question is if any of you have the positive anti-cardiolipin? I have tested positive in the past, but a few months ago it came back negative. I am still on 325mg of aspirin a day. I know I have to stop the aspirin after surgery as well. Should I be concerned about what will happen if it comes back positive again? I won't be able to take the aspirin, correct? And I'm worried about blood clots after surgery. How did you all do?
Thanks so much in advance to anyone who answers!
Lauren
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