Avoiding People and Places while Immuno-Suppressed

[norcalian]

I think I have posted my med regimen a couple of times already...but for this question I will post it again...I am taking 80 mg/d of prednisone, just finished my 4th infusion of RTX and am on 150 mg/d of Imuran. So I am told by my rheumy that I am sufficiently immuno-suppressed. I am not taking Bactrim or any other anti-biotic. I am avoiding public places and most people (other than family and close friends who are healthy). I'm wondering what other individuals on this forum are doing in terms of their attitudes towards exposure to people places and things. How militant do we need to be? I haven't been going to church or to work (I'm an educator and it's summer, so that's not such a big deal). I avoid stores, restaurants and pretty much any public place. Just curious about what others are doing. Thanks!

[Jack]

You are quite heavily immune suppressed at the moment so it is wise to take a few precautions. Personally, I find that taking Bactrim daily has helped a lot and I no longer get many of the minor infections that used to trouble me. However, once things are under control and you are taking only maintenance doses of medication I would try to revert to something more like a normal life. Avoiding social contact will do more harm than good.

[freakyschizogirl]

I think i've posted on here before about me on the buses to work. Especially in winter and cough season i used to wrap up in my scarf and if someone sneezed or coughed on the bus i would wrap the scarf around my nose and mouth for the entire journey, Lord knows what people thought of me. I also carry some anti bac gel in my handbag. But i'm not really militant. Good luck. x

[mishb]

I have a two and a half hour round train trip to and from work each weekday and thanks to your suggestion Sam, I also use a scarf for the entire travel.
Its winter over here at the moment so it works perfectly, but who cares what people think ... it's keeping me safer (I think).
I also use the hand gel and nasal wash and try not to touch the train door handles, or any handles for that matter.

I also agree with Jack that you still need to be able to socialise a little and not get locked away in a little bubble ... so to speak.

Just do what you feel you can. Take care :wink1:

[Sangye]

I avoid going to stores on weekends or crowded times. When I go I wipe down the electric cart handles with the sanitary wipes they provide. I'm generally very mindful about what my hands touch-- doorknobs, debit card machines, etc.... and don't touch my face until I've used hand sanitizer. I've educated the people at my temple to please stay away from me if they have a cold or a housemate has one. They're really good about looking out for me. We have a practice that involves handing out food like slices of luncheon meat, vegetables, etc.... Many people are involved--lots of hands in the bowls. I asked that people use hand sanitizer before passing food out. It's taken awhile but now it's routine and everyone appreciates that it's safer for all involved.

Bactrim helps with bacterial infections but it won't protect you against viruses or fungal infections.

This has been a huge change for me to make. As a chiropractor I wasn't concerned at all about being around germs, only about keeping my immune system strong.

[norcalian]

Thanks for the responses. This has been an interesting dilemma for me. I was already a bit of a germaphobe before getting sick...so I have a hard time telling if I'm taking this too far. Jack's advice sounds most like my rheumy - who says that he thinks I can return to work when I'm down to 30 mg/d of prednisone...but I read on this forum of people who go right back to work after the hospital (but of course I work with kids in a school - so that's probably why I would have to wait). I hate sitting around...but of course I really don't have the strength to do a whole lot anyway.

Not being on Bactrim or the alternative (since I'm allergic to Bactrim) has me concerned. The rheumy said that he would put me on the anti-biotic alternatives if/when I moved to oral CTX...but in the meantime I think he's trying to spare the stress to my liver. But I'm concerned about infection...

Thanks again for all of your feedback...this forum is awesome!

- Ian

[NicShaf]

Ian,
You're wise to be careful while immune-suppressed. I agree with what everyone else has said, I use anti-bacterial gel on my hands all the time, and avoid public places when they're crowded...like the grocery store and restaurants.
I did go back to work after getting out of the hospital, but I work in an office, and I pretty much sit in my little cubicle all day, I don't work with the public or with children. I let the people I work closely with that I am on immunosuppressant’s, so they know to be careful around me.
I still attend family functions and parties with friends though. They all know my situation, and know they can't hug me hello and goodbye, but for my sanity's sake, I don't avoid my family and friends all together:)

[Lightwarrior]

Nicole,
I work in a hospital (ICU) and my rule of thumb is if I am wbc 3.5 or below I stay in my office and off of the floor. I have had a couple of flares and spent 6 days in the hospital with a septic kidney stone. I do stringent hand washing and hand sanitizer wherever I go and if I have to go the Emergency department I wear a mask. My contact with patients directly is limited since we may have them for a day or two and then find out they have MRSA or another bug. I miss the interaction.

[drz]

Nicole,
I work in a hospital (ICU) and my rule of thumb is if I am wbc 3.5 or below I stay in my office and off of the floor. I have had a couple of flares and spent 6 days in the hospital with a septic kidney stone. I do stringent hand washing and hand sanitizer wherever I go and if I have to go the Emergency department I wear a mask. My contact with patients directly is limited since we may have them for a day or two and then find out they have MRSA or another bug. I miss the interaction.

When my WBC was real low (probably 3.5 is a good number) I would wear a mask when I had to go to hospital or clinic. When it is higher I would try have some social contacts but avoid people with colds and also use extra precautions like carrying hand sanitizer get with me and washing often. Several times people would cancel an activity with me due to illness so educating your family and friends is part of it. My wife also has a poor immune system and is more germaphobic than me, and avoids crowds more than I do, but seems to have had more colds and illness than me. The only severe cold I got was from her and that led to serious infections and a flare. So I guess some precautions are good but extreme is probably not so good.

[norcalian]

I'm new to how the whole WBC thing works...I mean I know the basics...but not sure how to watch my numbers or what they mean. I should probably do more research. as of my Friday labs, my WBC is 17.5 K/ul - which I think is really high...especially for being immuno-suppressed...but then again, I really don't know.

[pberggren1]

I'm new to how the whole WBC thing works...I mean I know the basics...but not sure how to watch my numbers or what they mean. I should probably do more research. as of my Friday labs, my WBC is 17.5 K/ul - which I think is really high...especially for being immuno-suppressed...but then again, I really don't know.

Yes, 17.5 is high for WBC. The pred or an infection can make it go high like that. I think a normal person would be 6 to 10.

[norcalian]

Yeah - a couple of weeks ago my rheumy said that he thought the pred was making my WBC high. My CRP and other infection indicators are normal - so I guess he thought it was probably the pred.

[pberggren1]

Ya, pred is notorious for doing that.

[malin]

My partner, family and friends all poke fun at me for being so worried about what I touch and about washing my hands, making sure they wash their hands etc etc
I neved used to be that worried about stuff like that but since Weg's hit I'm much more concerned and aware. Only bad thing is I tend to sometimes become a bit too obsessive, especially near my father in law, he keep koi fish and he is always outside doing things with their ponds, then he comes in n doesn't wash properly, so I have stopped touching things like the door knobs in the house etc. No offence to him but I don't want to take risks and he is the sort of man who isn't going to change and would be incredibly offended if I mentioned anything to him. :/ (Me n my partner live with his parents atm to save up for a deposit in the future)

[MCC]

All I did really was to avoid people who were obviously ill- ie) looked like they had a cold. I went into work and went about life as normal pretty much.

Be careful not to hurt yourself- I cut my foot when I dropped something on it and it took ages to heal and got infected so I had to take antibiotics.

[norcalian]

Thanks for all the input and ideas. Malin - that would be hard with your partner's father. I wouldn't worry about offending him with your obsessive washing...we got protect ourselves. My daughter just came home from school with a fever. It's June and there's still a bug going around her school. Knowing this, my daughter and I had been limiting our interactions the past couple of days (waiving goodnight instead of hugging)...but now we're trying to figure out how to proceed with this. I have three other younger kids and illnesses tend to tear through the whole family...I'm thinking of going and staying at parents for a couple of days, but not sure if that's really necessary...

[LisaMarie]

Since i had my 14 day sent in the hospital lastfall i have been on bacteria and acyclovir daily and will remain on it....i wear a N19 mask out in crowed places...kids ball games and if u leave my office at the hospital...i am holding on 10 mg of prednisone and once my b cells come back i will get the maintenance dose of 2 doses over 14 day period ....i hand santitzer in every care and purse i still go to church and attend activities the best i can...i just wear a mask and wash my hands....my IF doctor never wants me that sick again....so call me over protective...but it allows me to be social....trust me isolation reaks havik especially on high doses of prednisone...and poor family support....my husband finally is starting to uunderstand a bit of what we h
go thru ....so i take what i can get and take one day at a time...Dr Specks at Mayo in rochester is great if anyone need a good one here in the midwest :w00t:

[jola57]

I think like anything else common sense is what is needed. At the beginning i was super careful and did like Sangye, shopped in evenings, used a lot of hand sanitizer, when flying especially i used the sanitizer on hands and in my nose ( I had to get used to that )frequently and just used common sense. If I saw someone sneeze i run the other way ( well walked fast), didn't hand shake, and wore a scarf that I would cover my face with is I thought bacteria was around. All of it worked and during my most week moment I had only one tiny sniffle cold.

[freakyschizogirl]

I honestly think that having crusty noses does help protect ya from colds and flu.

I've had more colds this year since i've had a clearer nose.

[pberggren1]

I honestly think that having crusty noses does help protect ya from colds and flu.

I've had more colds this year since i've had a clearer nose.

In that case you can have all my crusties and chunks if you like. :wink1: