Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group immunosuppression and staph - advice please?

Hi everyone, it's been awhile! How are you all?

I'm supposed to be leaving for my sister's wedding in a week and a half and was looking forward to it.... until things kind of took a turn a couple of weeks ago.

My sister's fiance was contracted a nasty strain of staph in his elbow. He was hospitalized, in serious condition, because none of the IV antibiotics seemed to be working. After huge doses, he was sent home, but still needs to go in for twice daily IV infusions of a cocktail of antibiotics. It's not getting worse now, but isn't getting better either.

I have a blood disorder that cause my immune system to not work as well (I seem to pick up everything), I'm on Simponi (tnf inhibitor) as well as 30mg of prednisone a day (and will probably need to increase it tonight). I always seem to have a very difficult time fighting infections, even before I started immune suppressants.

My sister and her fiance are... let's say... not the most educated people in the world, and are very stubborn people.

I told them I would come to the wedding if his staph infection cleared up, but it's still draining cups of fluid per day (his arm is at least twice its normal size), and the concept of hand-washing is lost on them. He only keeps his infection covered part of the time.

I have tried, and tried, and TRIED to explain my disorders to them, how I'm immunocompromised, I've sent them links to read, even begged them to wash hands more while I'm there, or keep his wound covered... but my sister refuses to believe that any of my disorders are even real. She continues to tell me everything is either in my head, or I'm blowing it out of proportion, and she is NOT willing to make any "special accommodations" for me at all.

My sister said she talked to their doctor about me, and that their doctor said it's not contagious (well...umm.. how did he get it in the first place? She couldn't answer that) and it's perfectly safe for me to stay in there home for a few days with a dripping, oosing staph infection. (I suspect this is a total lie - I'm not sure she talked to her GP about me at all.)

I'm on disability, so getting my own hotel room is out of the question. I have to stay with them at their place. This whole thing is also putting considerable strain on my parents as well, as they don't like to get involved, and my sister usually threatens to "disown" my parents if it appears they're taking my side of things and she threatens them with never seeing their grandchild again.

I've tried to explain my concerns to my sister in many emails, I've sent lots of links from reputable sources (she said her doctor said they're all wrong - even the ones from the CDC and Mayo). She's goes back and forth on whether his staph infection is MRSA or not, but I'm guessing it is given that he's a young, healthy guy, and NO antibiotic has seemed to help much so far.

What freaks me out is they have no common sense hygiene, and they have a 19 month old at home! And then they wonder why they're always sick, all the time, but you can't tell her anything about hand-washing - she likes to think she knows everything. If you try to help her understand anything, she just flips out, starts yelling, hangs up or walks out, and then won't speak to me for weeks. She's the same way with everyone. Which probably explains why she doesn't even have ONE friend coming to her wedding - she is extremely volatile and controlling (we have no idea why this guy agreed to marry her).

So talking to her is out, sending her links is out, passing on words from my doctor is out, having someone else talk to her on my behalf is out too. Is there anything else any of you can think of that I could do just to get her to understand that I really do need her to be careful when I'm around? I'm beginning to think I shouldn't go to her wedding, but she will punish me for YEARS if I do that. My doctor said I shouldn't expose myself and shouldn't go (my sister said that was bs, of course).

My other concern is - IF I happened to pick up his staph infection (and I realize the risk is low... lower if I could just get them not to drip infection all over the house and wash their hands), I'm seriously allergic to every antibiotic known to man - so just the treatment alone would probably kill me. So even if it is a less-severe kind of staph infection, it would still be deadly to me. But of course... according to my loving sister, that is complete bs too.

I'm really at a loss as to what to do. My health isn't good at all, she is a narcissist at heart, and is "always right", so this is really, really difficult.

My GP said it would be very "unwise" to go to my sisters wedding and potentially expose myself to a resistant staph bacteria... but of course, my sister said that was bogus too.

Advice?

Thanks.

Don't take the chance. It could be your life, not theirs. I just finished taking oral antibiotics for 10 weeks for a probable MRSA infection. None of the cultures was done right...<sigh> Hoping a nasal swab next week is clear. I've been off all treatments since early May. Not a pretty picture. Don't risk it.

Um, don't go? This is not about your sister, it's about you. Your sister will never understand, so quit trying to make her understand. You are ill and you just can't make it down for the wedding. Family drama gets to take a back seat to protecting and caring for yourself.

first, good to see you here!
wish it were under better circumstances.

as hard as it may be, i just wouldn't go. as micki said, she'll never understand. i know how hard it is when its family. i know. i could go into all of my family dynamics as examples, but won't. but this is your life you are talking about; MDR staph is dangerous as you are well aware, i wouldn't risk it. i know, its so easy to give advice. i know it won't be an easy decision either way.

huggs

Sweetie,

YOU KNOW that I KNOW the situation but you need to trust your gut on this one and just some dang commen sense DON'T GO!!!

Not contagious my A** of course it is and you would be the one most likely to get it.

You also know that we have dealt with Staph AND MRSA and you HAVE TO take all kinds of precautions even in the best of circumstances when you are immune compromised you have to be extra dilligent.

I know this will not go over well, I know that you will probly once again be blamed that you are stealing wacko's thunder but IF she really cared about you we wouldn't be having this conversation would we? I could go on all day on what I would like to do to people that try and keep people emotionally hostage especially when they pull kids into it...there is a special place for these people I believe but you have to look out for you first...how often really do you get to see Z and you cant control what your parents let her get away with..sadly!

Love ya girl!

Megan, where will your parents be staying? Can't you stay with them? If they're getting a hotel room, they could probably afford to add an extra cot so that their immune-compromised daughter will not have to stay in a germ zone

Megan, I have seen others with MRSA - Dressings on the wound, are clean. There should be no visable wound. I think Lisa is right in what she has advised you.

Glad your able to use Simponi. Please watch carefully for any reactions as it has Sulfites in it.

Hugs
Gerri

What could she do to punish you that is worse then what she is already doing? I would cut off all ties to her, she is not a good sister to you so why bother with her? You might ask your Dr. for a not describing why you can't be there and mail it to her. Don't bother answering her e-mails. If she call you and tries to give you a hard time. just say your Dr. says you can't go and don't argue with her. If she tries to give you any problems, just hang up. She is endangering your life, this is not a simple cold germ we are talking about.

From the way you are describing her, you would be better off without her in your life. What do you gain from having anything to do with her? If you stay away and don't even communicate with her for a while, she might come around. You have let her get away with this behavior for years, it's time to stop or you life will be spent as nothing but a doormat.

I know this is hard for you. She has you and your parents well trained to be her slaves. Since she has driven away all her friends, she will really miss you if you cut of all contact. As I see it, thats your only chance of surviving in spite of your family.

I can't understand the complexities of your relationship with your sister but I think in this instance you should stay home and stay safe if they aren't rational about the current situation regarding the infection.

Look out for #1. Don't take a chance.