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

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.c...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

[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

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.c...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.