mrsa and lupus
Posted in the MRSA Forum
#1 Mar 21, 2008
Ive had lupus for a number of years. I recently was diagnosed with mrsa in my urinary tract. Also in my lungs. Everyone is afraid to be around me. Its not like I dont understand. But it still hurts. When I went to the DRs the other day, my folder had MRSA stamped on the outside of it. It almost made me cry. Does anyone else feel like this?
#2 May 25, 2008
Yes, I know exactly. I was diagnosed with Lupus in 1995, after years of misdiagnosis. I was just in the hospital for a TIA, caused by Lupus Vasculitis and while there contacted MRSA, I was put on vancomycin I.V. for 7 days and was cleared to go home.
Well, the Mrsa was originally on my one buttock and since being home, I have 3 more sores on my arm and one on my thigh. They are all very painful. The infectious disease Dr. was going out of town, and said I needed to be on Zyvox, since I am resistant to vancomycin. But I am on Zoloft and Elavil for serotonin treatment. I am supposed to be weaning off these 2 prescriptions, so when he gets back, he can put me in the hospital and start me on Zyvox. The problem is, when weaning off of Elavil, I got severe headaches and my blood pressure raised, which is what happened when I had TIA's and a stroke, so the Dr. said he would talk to me when he got home about my options and continue to take the elavil.
In the meantime, I am not supposed to be around anyone, for fear I may infect them. I have to use separate towels, personal items, etc. I have to disinfect the toilet seat and anything else that may have my germs. This is the holiday weekend and I am sick of being sick.
Since, I have had lupus, I really don't look real sick, I just feel that way. So, when people look at me I know they are thinking what a big baby I am, I can't be that sick if I look okay!
My husband has been great, but sometimes I even think he wishes I could do more. Right now, I am really in a funk, I ache all over, I'm extremely tired, I have mild headaches, and gastric problems, besides pain from rotator cuff tears, herniated discs, and pinched sciatic nerve. They can't operate because of my lupus and numerous illnesses, so I am on morphine orally and vicodin for break through pain. This doesn't even help. I don't get much sleep, because movement causes pain and wakes me up. I'm in a catch 22. I see 14 specialists and each one is trying to pass the buck to the other and nothing gets accomplished.
I just wish they would let me know where I stand. Everyone just keeps saying how very rare my conditions are. I am 58 years old, and if I don't get relief soon, I will go crazy!
I realize there are a lot of people way worse than me, and I sympathise with them. But, until you have this devastating disease, that people treat you like a leper, you don't understand what it feels like.
What are they doing to treat your MRSA, is your rheumatologist treating you or are you seeing an infectious disease specialist? They talk about us being so contagious, then why don't they quarantine us until we are well? How can you tell you have MRSA in your lungs? Did they biopsy you? I sure hope you feel better, what kind of symptoms did you have?
I wish you the best, and hope to hear about your recovery.
#5 Aug 9, 2016
I understandhow you both feel!!! I am 21 years old I was diagnosed with lupus at age 19....and around 20 years old I got infections...first yeast than staph.....and mrsa on my skin/scalp...honestly I don't know how I caught thoes...I don't hardly go anywhere because I'm in constant pain and these infections! It just ruin my life...I think it was because I was on a lot of lupus medications since I was 19 ...that's basically 3years because I'll be 22 soon ...ugh well this staph infection keeps coming back mainly on my scalp..and it's red and inflamed and it's draining puss like stuff..and it smells so bad...I feel like I been stuck in my house for years...my dermatologist gave me doxycycline to take for 30 days...but when I was in the hospital they gave Zyxon that cleared it up...but it keeps coming back
This is very stressful...i don't what to do...what medicine to take...I feel like I'm losing my mind :(
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