Oh no! Catching my 1st cold!

[Chris G]

Wouldn't you know it !! Just when I'm hoping my mtx increase will beat my immune system into submission, I think I'm catching a cold!! :mad1:

I haven't had a cold since starting immuno-supressants. What should I expect? Will it take me a month to get rid of it? Do docs usually want to decrease immuno-supressants while we're sick?

[JanW]

I've been on mtx for a year and probably had 3 or 4 colds over that time. If any thing, I have been less sick with colds (i.e. feel less beaten down by them) since I have been on an immunosuppressant. Generally, docs keep your immuno at a steady state and increase/decrease according to disease activity, not because of something as transient as a cold.

Hope you feel better soon!

[Sangye]

There's no way of knowing how a cold will affect you. Could be like a regular cold, could drag on much longer or could make you very weak. Before I got Wegs I rarely even got colds and hardly noticed it when I had one. Now it's a major thing-- greatly weakens me. I did have one last year that was very odd. I got extremely weak and sick with obvious cold symptoms (after a known exposure that day) but it only lasted 36 hrs.

[Jack]

I'm not sure if I have had a cold during the past 25 years since coughing and a runny nose are part of my everyday life. I expect that I must have had colds on occasions, but they obviously did not affect me to any great extent. I was quite alarmed when I read the recent experiences of burst ear drums since I had never considered that a cold could have such a serious outcome.

[freakyschizogirl]

I have to say after being newly diagnosed this was my biggest fear and i think i have mentioned my barrier methods such as covering my mouth and nose with a scarf if someone coughs in my general direction!:ohmy:

I got a cold over Christmas and it didnt affect me very much apart from coughing up extra mucus.

I havent really had colds in the last few years and i always attributed this with my nose being so stuffed up. Now that problem is going i expect more on the way.

Just keep an eye on it and if it gives ya any concern go and see your doctors.

As a side note is there any reason why i should have excess mucus on a daily basis? I did wonder if this was connected to post nasal drip but the mucus is further down my wind pipe near my lungs and when i breathe i can hear it and occasionally cough up the excess.

[Jack]

The excessive mucus is something you need to get checked out at some time. mine turned out to be due to Bronchiectasis and I know a couple of others on here have it too. A pulmonary doc is the one to give you a diagnosis.

There is nothing much published that links Bronchiectasis with Wegener's, but I suspect that there probably is a connection. I'm not a great believer in coincidence.

[freakyschizogirl]

ok thanks for that Jack. :thumbsup: I see my chest consultant in May maybe i should bring forward the apointment.

[Chris G]

I have to say after being newly diagnosed this was my biggest fear and i think i have mentioned my barrier methods such as covering my mouth and nose with a scarf if someone coughs in my general direction!:ohmy:

I remember reading about some of your germ preventing methods. I laughed, cause I do a lot of the same things. I was a germ freak BEFORE my wegs diagnosis. Now I'm even worse. And I take a lot of teasing for it too! But, like you said, catching a cold has been a huge fear of mine since starting on mtx.

The other day, I picked my kids up after a school dance......the second I walked in the door, I was sneezed on by a child who, of course didn't cover his mouth. I held my breath as long as I could.........a lot of good it did me! Here I sit with my first cold. Damn.

I guess I'll go try to rinse the nasty germs out of my nose now. Wish me luck.

[Sangye]

Not much you can do in that situation, ChrisG. One thing I do whenever I'm in a germy place is occasional snort out air through my nostrils and/or blow my nose. That will chase out some of the germs at least!

[Jack]

I take almost no precautions. I don't think there is much you can do to avoid infection when it is spread over every surface you come into contact with in addition to being airborne. So for me it is just the everyday things like washing that most people practice anyway.

[Sangye]

I'm very aware of whatever my hands touch. If I have to touch doorknobs and things like clipboards in the dr's office, I use hand sanitizer right after. I wash my hands as soon as I get home, too.

[delorisdoe]

I work with the public and at least 3 of my staff are sick at any given time. I dont take precautions. I take bactrim for pneumonia which i had in december and i do yell at staff who cough on me but otherwise i just live my life. i dont find i get more or less or worse colds either way.
leigh.

[freakyschizogirl]

The other day, I picked my kids up after a school dance......the second I walked in the door, I was sneezed on by a child who, of course didn't cover his mouth. I held my breath as long as I could.........a lot of good it did me! Here I sit with my first cold. Damn.


You're making me laugh now Chris G! I do the same thing if i havent got a scarf to hand! Hold my breath on the bus is quite comical!

[pberggren1]

I should carry some hand sanitizer with me. I do wash my hands many times a day and use alcohol swabs to clean the keyboard and mouse on the computer at home every day. My parents are very anti clean, but I have no choice but to live with them and I am not really going to do extra cleaning just to keep up after them.

[vdub]

I'm with jack and delorisdoe... I don't do anything special. I was in excellent physical condition up until '08 and don't recall having any sick days at work. I'm sure there must have been one or two over the past 40 years, but I don't remember them.

I haven't had any colds or flu after starting the mtx. But, I'm retired now and we spend most of our days with just me and the wife, so that might make a difference. We do go to a lot of germy places, tho -- shopping malls, museums, etc. But we aren't normally around a lot of kids.

I guess I do draw the line at nursing homes. I don't go to them -- they seem to be be magnets for germs and various illnesses.....

[pberggren1]

Museums hey! I like to go to those too.

[vdub]

We are in our RV most of the time. We only go home during the summer. We do have a house and always will, but it doesn't have much wear and tear on it. We travel all over the US, but haven't hit Canada yet. I retired in '06 when I was 55 and we hit the road. Generally, we go to 30 or 40 nat'l parks, monuments, or museums a year. So far, I have been able to manage my doc appts so that we are "passing thru" for the appointment or just ending or starting on our trip. All the docs have been very supportive. I get my blood tests on the road and fax them to all the docs. Prescriptions are the same way -- I get them filled where ever..... You never know, I might end up knocking on your door someday... :-) Oh yeah.... We are in Yuma right now -- sunny, 84 degrees, light breeze....

[pberggren1]

Hey there vdub, it would be awesome if you came to Canada. I am not far from the border, about 1 1/2 hour drive. And about 2 hours from us is a Provincial Park called Cypress Hills. It is very beautiful there. I would love to meet you and your wife. You will have to get your atlas out and see where I live.

[vdub]

I know exactly where swift current is and have considered the trip.....

[mishb]

I have been a germaphobe for many many years. I always wear sleeves of some sort and they always cover my hands to push buttons at traffic lights or atm keys, open doors, flush toilets etc and I had never had a cold or a sick day from work until July 2009. I remember the day well and I had a massive cold with flu like systems and then the sinus congestion and the start of my troubles as to where I am now ... a member of this wonderful weggie family. I am worse now, using hand sanitiser all the time, using a sinus spray after going to shops etc and still wearing sleeves (even in summer). Thankfully my husband is a cleaner and although our house is very clean it is not sterile to the point of over obsession.
I too would draw the line at Nursing Homes and try to avoid crowded places as much as possible, but I always have.
Michelle

[pberggren1]

Oh, now I am getting excited! What kind of RV do you guys have?

[Chris G]

Ugh. My cold is worse......I feel miserable. At least the fear of catching that first cold is behind me now.

Ok, fellow germ freaks.....here are some of my anti germ routines. I carry anti-bacterial wipes and gel with me at all times. I wipe down all shopping carts prior to touching them. In the winter, I keep my gloves on in stores as long as possible - sometimes even after I've taken off my coat. I use my sleeve to open doors, and push buttons if possible - if not, I use my acti-bacterial arsenal after touching anything. And I wash my hands the second I return home. I carry my own pen, and will not use a clerk's pen to sign a charge slip. Which brings me to my biggest pet peeve.......the new electronic signature machines, with the fake pen you have to sign with - I HATE them!! Worst of all is the one at the PHARMACY!! Who's using the pen at the pharmacy???? Hundreds of SICK people!!!

[pberggren1]

Oh ya, I forgot about those silly electronic signature pens. How does one get around that? I guess just going to the regular checkout then.

[freakyschizogirl]

or take you're own pen...you dont have to use the ones attached if ya can find something blunt like a DS point pen thing, lol. Love Pred cant think of the right word....

[Jack]

You can't go through life without touching things! Unless you are heavily immune suppressed I would ease up on the precautions a bit. In 25 years, I think I have had food poisoning a couple of times and that is about it. Everything else has been unavoidable such as fungal infections or lung infections.

[pberggren1]

I so know what you mean Jack. We can't live in a bubble and there is only so much we can do to prevent an infection.

[Sangye]

The few times I've been careless I've gotten sick right away. Prior to Wegs I never got sick-- went years in between colds and they were usually mild. I never even thought about germs and was exposed to very sick kids on a daily basis.

Jack, I think there are a few factors working in your favor that allow you more wiggle room with precautions. You're on Bactrim, which probably kills a lot of bacteria that might otherwise make you sick. You're also on Cellcept-- a lot of people on here are on the stronger immunosuppressants like you were in the beginning. Also, active Wegs itself is immune-suppressing. Yours is thankfully under control! Of course there's no way of knowing. Whatever the reason, I'm just glad you don't get sick! :smile1:

[Ginger]

i remember when my dad made me wear a mask everywhere for two months after i got out of the hospital.
The sad part was, my lymphocytes were FINE :predrage:

i didn't know that of course....

i walked into the nephrology clinic one day and one of the nurses i know asked me why i was wearing a mask when i didnt neeed too..... you can imagine how much pred rage i got after that lol:glare:

[Jack]

You are probably right Sangye. I tend to speak from my own experience and expect it to apply to everyone when I know full well that it is not the case. :rolleyes1:

[Sangye]

i remember when my dad made me wear a mask everywhere for two months after i got out of the hospital.
The sad part was, my lymphocytes were FINE :predrage:

i didn't know that of course....

i walked into the nephrology clinic one day and one of the nurses i know asked me why i was wearing a mask when i didnt neeed too..... you can imagine how much pred rage i got after that lol:glare:
I bet your dad really wanted to put you in a giant ziploc baggie but settled on the mask. :blink:

[Sangye]

You are probably right Sangye. I tend to speak from my own experience and expect it to apply to everyone when I know full well that it is not the case. :rolleyes1:
Well, we all do. It's impossible to tell what's going on, you know?

The main thing that concerns me is what Dr Seo once told me: that more Weggies die from infection than they do from Wegs. Even so, he has also said one has to draw the line between taking reasonable precautions and becoming paranoid about germs.

[delorisdoe]

I just saw an episode of the Doctors and they said they believe they almost never get sick BECAUSE of all of the exposier to illnesses they have. They said med students and residents are always sick as it is new for them. I would think if we needed to be that worried about catching common colds etc. than we would be advised to wear face masks like cancer patients do. I have never had a doctor tell me to avoid a cold. I just get dirty looks when i admit i do not ever remember to take my bactrim.

leigh.

[Sangye]

Ack!!! I can't believe the "Doctors" said something so stupid. Med students and residents go without sleep, are under tremendous stress and often eat poorly due to financial and time constraints. All of that suppresses immune function.

Before I became a chiropractor I taught school for 8 years. I never got sick. As a chiropractor I specialized in pediatrics and had an office full of sick kids all the time. I still never got sick. Getting colds/flus frequently is about the status of one's immune system, not just about exposure to germs.

[delorisdoe]

You are probably right Sangye. I tend to speak from my own experience and expect it to apply to everyone when I know full well that it is not the case. :rolleyes1:

I would expect that is the purpose of this site though. I fully expect that when I post a rambling question that may or may not make any sense that you and sangye and everyone else will answer me quickly with their own personal experiences.

[Daggar]

i remember when my dad made me wear a mask everywhere for two months after i got out of the hospital.
The sad part was, my lymphocytes were FINE :predrage:

i didn't know that of course....

i walked into the nephrology clinic one day and one of the nurses i know asked me why i was wearing a mask when i didnt neeed too..... you can imagine how much pred rage i got after that lol:glare:


OMG Little Weggie... ..2 months!!?? :rolleyes1:That timeline has been extended!!

Now I'll admit to extending the nystatin beyond what may of been necessary.....I'll admit to checking on you throughout the night....I'll admit to being your shadow during the first few weeks out of the hospital....I'll admit to a lot of things but "2 months"!!??:rolleyes1:

Seriously -- when your immune system came through that first cold bug I realized I may of been a tad "overprotective"!!:unsure:

[vdub]

I am "quarantined" from going to a lot of places; mexico, pac rim, cruises, etc. But not because of any issues concerning getting sick. The issue for me is the quality of care if I do get sick. Particularly if whatever illness I would get ended up with vomiting or anything that would prevent me from absorbing my drugs. My endo says I am too high a risk for anything but good modern western care. I will miss snorkeling in Mexico, but I'll get over that and I always have Hawaii....

[drz]

I am "quarantined" from going to a lot of places; mexico, pac rim, cruises, etc. But not because of any issues concerning getting sick. The issue for me is the quality of care if I do get sick. Particularly if whatever illness I would get ended up with vomiting or anything that would prevent me from absorbing my drugs. My endo says I am too high a risk for anything but good modern western care. I will miss snorkeling in Mexico, but I'll get over that and I always have Hawaii....

Does this mean we can never do those things again? I really miss traveling around the world but can't imagine how I would cope with a serious illness in Africa or Antarctica or in the Amazon or many of the places I would really love to have visited.

[vdub]

No.... I'm a different situation. Wegs is only half of my problems. My biggest problem is the panhypopit....

[pberggren1]

I agree with you Sangye. Those docs on TV give out so much false info. But we can do preventative things to protect us. My doc told me to avoid crowds while on ctx and to wear a mask if I have to be around a lot of people for a long period of time and to avoid someone that is sick. It only makes sense to me.

[delorisdoe]

I just thought it was interesting.

[Sangye]

drz, it really depends on how you do in remission. Those places are out of the question for me, so I'm glad I did most of the traveling I wanted when I was younger. It's still early in the game for you-- way too early to tell if those types of adventures are off the table.