Systemic Lupus Erythematosus (S.L.E) Community Group

Hi!I am recently diagnosed with SLE and has been searching for an online support group to no avail, and hence, I have started this group. Use this platform to share your challenges in battling against SLE and may your stories be a form of encouragement and strength to other sufferers out there.God bless!

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jazzy21 07/21/2017

hi everyone I really need your help or advice. I was diagnosed with Lupus in May, and I have been prescribed plaquenil 400mg as well as levothyroxine 50mg for my thyroids cause I had a minor case of hashmotos. I have recently seen my doctor for an update on my thyroid levels and he says they are now normal and to keep taking the levo. However, my main concern is the weight I have gained in my face. It started happening last year November, and at first I thought it was because I was eating more. Since then I have changed my diet, I drink a ton of water and I exercise. My body is becoming fit like it used to be but my face is still very round and puffy like moon face, and I don't know why. It's destroyed my self esteem because my face has never looked like this. I don't know if it's the meds, because I have only been on levo and plaquenil for 2 months, but since I have been taking them, my face got even puffier. The doctors don't have an answer as to why. I don't know what it could be. I don't know if anyone has gone through something similar but I would really like some help. I have done so much research, I feel like I am over thinking the problem. I don't know if it's allergies, or an allergen, or the meds, but please help!!

MRS_BLOCKTON 07/30/2017

I was diagnosed on June 26, 2017. This is all so very new to me...and doctors seem to guess alot or even say they don't know. They do act as though they have never heard of these symptoms before....I am perplexed that so many people have this issue and they say I don't know...consult another type of doctor. Well, just last week my face would swell up soooo badly..I happened to have an appointment on Monday with my Neuphologist...i told her about the swelling...she is treating me for low sodium level....she said....talk to your rhumetologist. The Rhumetologist took 2 days to contact me and says...oh no...not from lupus. I told him well, i started my cycle for the 1st time with lupus and asked if hormone changing could cause this he says...he doesn't know. The next day it was even worse...he said to see my primary physician who knew absolutely nothing...he just asked for bloodwork....smh....So i called my gynecologist and in her many years...she did not know either....so I had to call on DR. GOOGLE. Being very specific but not too detailed in the google search is imperative.
So for my swollen face and pressure in my ears and throat after day 3...I googled face swellings.
And 4 out of the list....i thought could apply to me:
1. Staying Hydrated (My Neuphologist put me on a 32 ounce liquid per day) but she had no clue why i had face swelling
2. I can also reduce my salt intake (Hmmm. I take sodium pills that i have now reduced)
3.Sleeping on your back (i switch sideds during the night and the side i wake up on is the worse) last few nights...i did back to sleep...painful on my back but less swellings. I also did slightly elevated.
4. Hormonal Influctations during pregame or cycle can cause excessive fluid retention leading to swelling face....(but my gyno had no clue no did my rhumetologist...smh)

It has been a horrible month...not getting answers and being in so much pain waiting for meds to kick in....
Do you have to ask for a refill from your docs or can u you just go to the pharmacy. I ran out this morning of the lupus meds and b12 and i called in the pharmacy...they said tomorrow.....hmmmm why would the doc have it on file like my birth control was just renewable...i want to ask him tomorrow..AM I FREE OF LUPUS NOW? Then why did i have to miss a day? Smh...all so frustrating. I hope you find the answers that you need. Take care.

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