New Member Here!

[Debbie C]

[QUOTE=mishb;100965
and I do have over 20 years of accumulating sick leave
[/QUOTE]

What Michelle, You have over 20 years sick leave...why don't you retire ?????

Hi Skempins...welcome to the family,sorry you had to join us but like everyone said this is the best place to come for info. The one very important thing to remember is now that you are on these meds, your immune system is compromised, so you need to be very vigalent (sp ? ) about washing your hands often and avoid being around sick people especially now with the cold and flu season here. I don't know where you work,if you are around a lot of people but be careful about germs. In the beginning I would were a mask or a scarf. Take care and try not to let the people at work get to you because being on pred that won't be hard !!!!

[Skempins]

What Michelle, You have over 20 years sick leave...why don't you retire ?????

Hi Skempins...welcome to the family,sorry you had to join us but like everyone said this is the best place to come for info. The one very important thing to remember is now that you are on these meds, your immune system is compromised, so you need to be very vigalent (sp ? ) about washing your hands often and avoid being around sick people especially now with the cold and flu season here. I don't know where you work,if you are around a lot of people but be careful about germs. In the beginning I would were a mask or a scarf. Take care and try not to let the people at work get to you because being on pred that won't be hard !!!!

Thank you for your advice! I was actually warned to avoid sick people and to sanitize a lot but I wasn't sure if it meant I was more likely to get sick or if it was more dangerous to get sick now that my immune system is compromised? I do work in a busy courthouse, so I'm carrying around sanitizer a lot. I hope I don't catch anything! I'm trying to avoid being stressed as much as possible, as well now that I'm on prednisone, but that's easier said than done! I tend to get very anxious on it haha. Thanks for the advice. Best of luck to you as well.

[annekat]

Thank you for your advice! I was actually warned to avoid sick people and to sanitize a lot but I wasn't sure if it meant I was more likely to get sick or if it was more dangerous to get sick now that my immune system is compromised? I do work in a busy courthouse, so I'm carrying around sanitizer a lot. I hope I don't catch anything! I'm trying to avoid being stressed as much as possible, as well now that I'm on prednisone, but that's easier said than done! I tend to get very anxious on it haha. Thanks for the advice. Best of luck to you as well.

I think it means more that it can be more dangerous to get sick, as it can be harder to fight off the infection or virus with a compromised immune system. More likely, I'm not sure.... maybe working where you work makes it more likely for everyone. I've heard that frequent hand washing is the best preventative, followed by hand sanitizer, which can also be dabbed around your nose, mouth, and ears to fight off germs coming into those places. I don't think I get sick any more often than before WG, but then I'm home a lot. I've gotten one cold in the 4.5 years and it did take a little longer to get over it, and may have been a trigger for a moderate flare a couple of months later, though I think there were other reasons such as being undermedicated with the WG drugs. I hope your pred gets lowered soon to where you don't feel so anxious.

[Birdie]

I was actually warned to avoid sick people and to sanitize a lot but I wasn't sure if it meant I was more likely to get sick or if it was more dangerous to get sick now that my immune system is compromised?

It means both, more likely and more dangerous. Don't take chances. If you feel an infection you need help from a doctor much sooner than you did before Wegener's & immune suppresion drugs.

Infections can now run you down much faster, weakening your entire body to allow other issues a foot in the door. Also, prednisone pumps up your metabolism which masks the effects of infections. You may not "feel" as sick as you are. It seems that most of us here have stories of rushing to the hospital only to find out that we had multiple/serious infections at the same time.

Seven hospitalizations for infections in the first six months. Without the pred I would have known just how bad it was on all seven occasions. I'd rather not see anyone else go thru that learning curve. I have since learned... sniffle = call the doctor.

[Green Grass & High Tides]

I worked with misdiagnosed wegs for 2 years. That was hell and i changed careers to psychotherapy thinking it would be more sedentary. Worked sick on mtx and pred for about another 4 years. Then i just couldnt anymore.

Built a business i can do from a hospital bed. But even that i have to be careful. Stress is a trigger for wegs. So low stress work that keeps me positive and building stamina is good. If i exhaust myself and wegs gets on top it can catastrophic.

Im thick headed with a built in "forgetter". I made myself stickers that say:

NUTRITION
RAISE ANABOLISM (pred is catabolic)
RESTORATIVE SLEEP
STRESSORS INT | EXT

Thats my first things first plan. If i do that ahead of work I stay out of the hospital. If not it can take years to recover from a severe wegs attack.

Sent from my SM-G925V using Tapatalk

[mishb]

What Michelle, You have over 20 years sick leave...why don't you retire ????

Lol sorry, aussie talk.

We get 12 sick days a year, and these have been accumulating for the past 26 years.

I kind of wanted to save them in case I needed them one day.
I was thinking maybe a heart attack, stroke or something like that, never once imagining an auto immune condition would do it.

[jlove]

Welcome to the forum, Skempins! I am also a 25 year-old woman with GPA and I feel your pain when it comes to people not always being understanding.

In terms of medication, as a few people have mentioned, working while on prednisone can be a little weird. I get distracted and agitated easily on prednisone but I found taking breaks and walking away from my desk for a few minutes really helped. I didn't have any problems with Methotrexate, as far as I know. Concentration was really the big thing while I was MTX/pred.

I have debated how much I want my co-workers to know about my illness because people can react in all sorts of ways. My direct supervisors know a lot and this has been really important for me because they have been understanding about times when I need to miss work. They are also understanding when I need to leave my desk for a bit or miss a full day for a Rituximab infusion. I have found it helpful for some other co-workers to know I have "an autoimmune thing" because it sounds scary to them and so they seem to respect this as a reason for my missing work from time to time. On the flip side, there are people I have told who disappointed me with their reaction. It's all about what you're comfortable with and what you think will serve you best in maintaining balance in your life.

Good luck with your treatment!

[MikeG-2012]

Wow, thank you ALL so much. This forum is already very useful (the "search" suggestion in particular!). I feel good to have introduced myself and to not feel alone in what I'm feeling.

Awww, shucks, you made my day with that one. You're welcome!!

Please know that you are NOT ALONE. You have MANY, many friends across the globe that can help you with just about any aspect of this wonderfully awful disease.

[Birdie]

In terms of medication, as a few people have mentioned, working while on prednisone can be a little weird. I get distracted and agitated easily on prednisone but I found taking breaks and walking away from my desk for a few minutes really helped. I didn't have any problems with Methotrexate, as far as I know. Concentration was really the big thing while I was MTX/pred.

I have debated how much I want my co-workers to know about my illness because people can react in all sorts of ways. My direct supervisors know a lot and this has been really important for me because they have been understanding about times when I need to miss work. They are also understanding when I need to leave my desk for a bit or miss a full day for a Rituximab infusion. I have found it helpful for some other co-workers to know I have "an autoimmune thing" because it sounds scary to them and so they seem to respect this as a reason for my missing work from time to time. On the flip side, there are people I have told who disappointed me with their reaction. It's all about what you're comfortable with and what you think will serve you best in maintaining balance in your life.

Well spoken.

I've had no issues telling people "Wegener's Granulomatosis", but there is no way to get them to understand. Seems people just want to hear that you have something they've heard of before, so they can move on without being bothered by contemplating what it means. Say cancer, stroke, diabetes, etc. and there's instant acceptance that you're sick, as well as compassion and understanding. Otherwise you get "But you don't look sick" (.com )

[Tanya]

I'm in Ontario too. I just found this forum. It's really nice to know I'm not alone.
I have kept working through the 2 1/2 years since diagnosis, but I cut back my hours about 6 months ago.
Between meds and disease I found it was taking me longer to recoup after shifts, especially when the shifts were really busy (I'm a labor and delivery nurse).
when I first started the prednisone the biggest thing I noticed was the hot flashes. I kept taking my temp thinking I had a fever until I figured out it was hot flashes. I joked that it was like menopause and puberty- hot flashes and acne. How you react will depend on how high of a dose you are on. The other thing is what I call fuzzy brain- some days my brain doesn't process information as quickly as it used to.
stay away from sick people- you can potentially pick up anything they have and a simple cold can turn into pneumonia seemingly overnight. I sanitize constantly at work and after shaking hands etc.
listen to your body, if you are tired make sure you rest.