Your personal experiences in treatment?

[andrew]

Hi hi
Interesting questions.

I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

Hope that helps!

[cawcawcaw]

Hi hi
Interesting questions.

I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

Hope that helps!

Hey Andrew,

Thats good to hear you could arrange the schedule to once a month on a Friday.

I am a designer and have been doing internships and even when employed as a junior I will be expected to work pretty hard (which is fine).
But just long days and working late and no time off is expected, I can't really afford to be sickly when there are 100 other people ready to take my place?
I interned for the past 2 weeks, 8am-7pm then did not get home till 9pm from travel then up at 5am to go in and my health has been so bad Ive fainted and slept so much at weekend from fatigue.

I had an interview last week, will hear back Mon/Tues and I am actually scared it will be a yes? I don't feel very able to work right now and I'm not even on any treatment yet.
I don't want to start somewhere then have to give up due to sickness but I am aware your health is your wealth and breaking yourself for someone else is not worth it.

Will discuss with my Dr's when I actually see them, and talk about side effects and then it really is a game of waiting to see how I personally react. I could be fine ha.

You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?

Thank you x

[andrew]

You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?

Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.

[cawcawcaw]

Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.

Ah, thats very good to hear
I guess I just need to try and be patient with myself - no point pushing myself (even if I do feel better) and making more healing for myself.
Just anxious that I have been working towards full time work and suddenly might have to change my path for a little bit.

[andrew]

suddenly might have to change my path for a little bit.

That'll probably happen a lot It makes you more resilient