New Member Here!

[Skempins]

Hi everyone!

I am a 25 year old woman and live in Ontario. I was just diagnosed yesterday. I have been prescribed methotrexate and prednisone. I am so glad I found this group as it has already taught me a lot! And is a good support group, as a lot of people (aka my coworkers) just don't get what I'm going through. One was not too impressed I was taking work off because of my symptoms. I return to work tomorrow before I begin the medication. If anybody else has had experiences with the medicine effecting their work, could you please let me know?

Thank you!

[MikeG-2012]

Welcome to the madness! LOL!

Take advantage of the search function to search for things that you want to know about. It is a really great tool with this forum.

I am sorry to welcome you to our elite group, but glad that you found us!

[Dirty Don]

Welcome Skempins...glad you found us before your fellow workers got to you! Others really don't get it...and I don't blame them, but I don't listen to them either. Even family has a very hard time understanding as one doesn't 'look' different, but we feel like crap inside. Anyway, hope you have good docs...sounds like they have you going in the right direction. Best to you & ask & share all you want on here...great place to be in the early stages.

[Birdie]

a lot of people (aka my coworkers) just don't get what I'm going through. One was not too impressed I was taking work off because of my symptoms. I return to work tomorrow before I begin the medication. If anybody else has had experiences with the medicine effecting their work, could you please let me know?

Welcome Skempins,

Sorry you're here but you are correct, this forum is the best place if you've got Wegener's or know someone with it.

First thing is to read Spoon Theory:

But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Then have anyone who don't gets it, immediately read it...

In the beginning, work & Wegener's won't likely be very good buddies. It's just a hard truth. The first part of treatment can be quite difficult due to side effects of medication (mostly prednisone). So hope for fast control of your symptoms but don't get too optimistic since let downs are more difficult than pleasant surprises. You can't rush getting control, it will backfire and cause many more problems.

If you're of a mind to do so then I suggest a post along these lines:

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html#post98791

Let us know your situation and helpful hints are easier, but ONLY to the extent you're comfortable with.

Gary

[drz]

Hi everyone!

I am a 25 year old woman and live in Ontario. I was just diagnosed yesterday. I have been prescribed methotrexate and prednisone. I am so glad I found this group as it has already taught me a lot! And is a good support group, as a lot of people (aka my coworkers) just don't get what I'm going through. One was not too impressed I was taking work off because of my symptoms. I return to work tomorrow before I begin the medication. If anybody else has had experiences with the medicine effecting their work, could you please let me know?

Thank you!

How the meds will affect you is unknown. The dosage of pred is a big variable but people react to it and MTX differently. Pred messes with you emotional balance but might give you more energy and can screw up your thinking at higher dosages. Hopefully the impact on you will be minimal and that you notice a gradual decrease in adverse symptoms and feel better in a few weeks.

[annekat]

Welcome to the forum! I'm glad you've found us. I agree with all the above. The prednisone may give you quite a boost energy-wise, though there are unpleasant side effects, more for some than others. I've never found it terribly problematic. A search on it here will yield a lot of info. As for MTX, I'm on that, too, and it's nice that it's taken only once a week, so that you can plan the days you take it to fit your schedule, minimizing the side effects on days you least want them. For many, some degree of nausea is a problem. This can be helped by splitting the dose within a 24 hour period. I've only felt slight nausea and a general sense of malaise. After 3 or years on the med, I've pretty well gotten used to these and often don't notice them. Though I've heard of others having side effects start to increase after years on the med. Everyone is different and reacts to the meds differently, and there are alternative meds.

As for working, it sounds like you will be able to to that, but it would be good of your employers and co-workers to become more educated about this disease and cut you some slack if there are times, especially early in the treatment process, when you will need to stay home. I couldn't work for about a month, and then only to a limited degree for awhile, but I was on a heavier-handed med to start with and had both lung and sinus involvement. The fact that they are starting you on MTX suggests that you have a less severe case, not to minimize that you probably feel rotten a good part of the time. Best of luck in dealing with it all, and keep us updated.

[Erin2014]

Welcome to the forum Skempins,

I'm a fellow Ontarian (Ottawa)! I'm a newbie too and have found this forum very informative and the members are very supportive.

I was very ill before my diagnosis and spent 3 weeks in the hospital (transfusions, testing, etc.). I had a lot of sick leave banked and was off work for 8 month, then went on disabilith for a few months (they approved me in 24 hrs1) and did a gradual return to work from May to Oct. I am now full-time. I was diagnosed in Oct 2014 and I'm now in remission (medicated). I've been very lucky to have a extremely supporting boss (a nurse) and a director who is a kidney transplant recipient! I really believe that my ability to achieve remission within a year is due to the fact that I took the time my body needed to heal. I've been off pred since May and have not had any relapses (knocking on wood!). I agree that your colleagues need to be educated about this disease and your primary job should be to get better and take care of yourself! If you can, take time off especially in the treatment phase - it will give you time to adjust to your meds. High doses of pred left me very anxious and unable to sleep.

I hope your treatment goes well and that you rebound quickly!
Erin

[mishb]

Hi Skempins and welcome.

I'm so glad you found this forum and not tried to go it alone.
Ask as many questions as you like, or as said above, check out the search engine.
No question is too big, too small, too silly or too plain. Someone else may be thinking the same thing and be too afraid to ask.

Apart from crazy joint pain and crazy sinus infections, I continued to work all the way through my WG experience.
I had one week off when I was first diagnosed, and then 3 weeks off, 4 years later, when I tore my calf muscle (thank you Mr Pred)

I only said the other day, that the reason I continued to work the entire time (and I do have over 20 years of accumulating sick leave). is that I needed to feel busy so that I didn't sit at home and wallow in the woe it's me or the why me's. I needed a reason to get out of bed each day.
My job is not physical at all - I work in Insurance and Accounts.

What I'm trying to say is, depending on how you feel, and what type of job you do, there is no reason that you can't continue to work, with the meds you are taking.
You may need to cut your hours down a bit or see if you can take a day off in between days (say a Wednesday) for a bit of a recovery period, but if you feel okay, then do it.

I'm sending massive hugs to you from Australia, because I know that craziness you must be feeling with just being diagnosed, and also the relief that you may have, because there is finally an answer and a name to why you have been feeling so crap :hug1::hug2:

[Skempins]

Wow, thank you ALL so much. I am so grateful for all of the support and advice. I've felt a bit overwhelmed these past couple of days, so it definitely helps.

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.

[Skempins]

Welcome Skempins,

Sorry you're here but you are correct, this forum is the best place if you've got Wegener's or know someone with it.

First thing is to read Spoon Theory:

But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Then have anyone who don't gets it, immediately read it...

In the beginning, work & Wegener's won't likely be very good buddies. It's just a hard truth. The first part of treatment can be quite difficult due to side effects of medication (mostly prednisone). So hope for fast control of your symptoms but don't get too optimistic since let downs are more difficult than pleasant surprises. You can't rush getting control, it will backfire and cause many more problems.

If you're of a mind to do so then I suggest a post along these lines:

http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4932-wegener-s-sucks-case-someone-didn-t-already-know-3.html#post98791

Let us know your situation and helpful hints are easier, but ONLY to the extent you're comfortable with.

Gary

Thank you for sharing these! This is very informative.

[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 !!!! :predrage:

[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 !!!! :predrage:

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 :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. :unsure::razz:

[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.

[Skempins]

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.

That's really interesting, and good to know. Thank you. I didn't know that about pred and metabolism.

[Skempins]

Thanks again to everybody for the advice! I do find that my coworkers have been supportive. They've even agreed to sanitize whenever they come to my desk (I'm the supplies person, so often I had people just opening my drawers without asking all the time...). Unfortunately, my Manager hasn't even asked me how I am and she doesn't sanitize, but I do whenever I come in contact with someone.

I'm home sick again today and so I really appreciate the advice. I have another bronchoscopy (no dilatation this time around) coming up. I'm glad I can re-read the messages on here. It helps, so thank you!

I wish you all well both with the diagnosis and with the side effects of your medication.