Curious...how many members work with this illness

[Marley3562]

Hi.. it?s Marlene. I was correctly diagnosed with GPA July 2018. I have finished 4 week course of Ritixumab and am still waiting to see results. I?m not the normal Weggie, in that my disease originally presented with my left eye. I?m rheumatologist has pulled me from work, while I?m having treatments and appointments. She signed me out for 6 months....but my job is questioning the length of time my dr has asked for. Has anybody else had issues with being out of work for treatments?
Thanks

[Tim wga]

Hi.. it?s Marlene. I was correctly diagnosed with GPA July 2018. I have finished 4 week course of Ritixumab and am still waiting to see results. I?m not the normal Weggie, in that my disease originally presented with my left eye. I?m rheumatologist has pulled me from work, while I?m having treatments and appointments. She signed me out for 6 months....but my job is questioning the length of time my dr has asked for. Has anybody else had issues with being out of work for treatments?
Thanks

What was the Doctors reason for you not to be able to work.

Ive had WGA for 3 years and only missed 3 days of work because I was in the hospital.
Beside joint pains and felling wore out and shortest of breath. I just push through.
I found out more you stay active better you feel.

First year I laid around and thought I was dying.

3 years later I come home after 11 hour day and try to do something for hour or two before I rest for the day.


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[Marley3562]

She didn?t want me to return to work until I was in remission, which she felt she could obtain in 6 months
I agree...best to push through and be active. My issue is my sight. Fluorescent lights really kill me.

[Tim wga]

She didn?t want me to return to work until I was in remission, which she felt she could obtain in 6 months
I agree...best to push through and be active. My issue is my sight. Fluorescent lights really kill me.

Wow my Doctor never gave me. Remission time frame. He said it could take years or never and just take the meds to maintain.
Once the current meds stop controlling it look into stronger medicine

I know what you mean about the light
All the steroids gave me glaucoma and bright lights kill in my right eye

Good luck I hope you are in remission within 6 months.

By doctor said the rituxan medicine is the next step.

Please let me how it works compare to methotrexate and prednisone



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[Marley3562]

Tim...I can?t decide if my dr was being optimistic with time frame, or just something she writes for work notes.
I feel that the Ritixumab has possibly helped me taper from 60 to 30mg. I am still symptomatic, but it was easier coming down than on prior tries.

[Alysia]

Each one is different with how WG affects him and how long it takes to get into remission. Working also depends on the kind of work.
After my WG onset I couldnt work at all for many months. I tried to be back to where I worked but it was too many hours so I quitted. I now work in my own office about 20 hours a week. Hardly enough to make a living but even those hours are not easy for me.

[drz]

It varies greatly. I remember some members who went back to work in jobs that involved heavy physical labor almost immediately. I think one was a lumberjack. Many others were disabled by their GPA and unable to work again in any meaningful manner. Most fall somewhere in between.

I retired before my diagnosis because as my health was failing from the GPA I didn't feel able to do my work correctly anymore. After my diagnosis and several months of in patient treatment and rehab, I knew I could never work again and was glad I was retired,otherwise i would have applied for disability.

[richard052018]

I am also highly interested in the response to this inquiry. Diagnosed back in May 2018. I myself went back to work after about 3 weeks (11 of those days in the hospital, pulmonary hemmorage). I took a day off after each of my 4 RTX infusions, but beyond that, I haven't missed much work (desk job).

To be honest, I'm doing quite well right now (I'm even doing yard work at this point). Just got an all clear CT scan (beyond the nodules that will never go away), and my Kidney function is still in normal range. I'm having ocular pressure issues but they haven't impacted my eyesight, and I did put on 40 pounds (I hope to take off eventually).


I'm worried though that I am just in the honeymoon phase where I'm loaded up with PRED (currently still on 20MG/day), but once the PRED is tapered/lowered more, this carriage is going to turn into a pumpkin (as it seems to do for everyone once they go off meds).


I've got a family (almost 7 year old) and a mortgage and I need to be able to work. My greatest fear is that I won't be able to work and we lose everything. My wife even wants another kid (I beg her to let this go, but I get nowhere).


Right now I'm holding steady, but again, aware it can go to crap at any moment. Would love to know how many out there were able to get another decade or so of work post diagnosis (this is my goal).


Take Care and Bless You All!!

[Alias]

I left my stressful job shortly after being diagnosed. During that first year I really was not able carry on normal activities, plus, I hated my job anyway. As you all know, stress is major trigger for symptoms. If you like your job and can carry on, it's no doubt a healthy thing to do.

[mishb]

I work full time and have missed about 40 days, but most was before diagnosis. ten years ago
I have worked in my current position for 29 years and therefore my bosses are super awesome towards taking a couple of hours off for appointments etc.
I work in administration and accounts, so I do get to sit down all day.
My travel to work takes 1.3 hours each way, and if I'm not checking in on this forum or on facebook, I am having a snooze.
My specialists are about 15 minutes away from the office, so I can travel down to them and get back to work afterwards.
I also have the luxury of my grownup kids working with me, so if I'm having a bad day, then they just step up and cover for me too.

I find that keeping busy, for me, is better than staying home and worrying about WG and bills and doctors etc

[cutehair2013]

I totally agree with the fact that it is different for everyone as well as the severity of the overall symptoms. Myself I returned towork after a short stay in the hospital with a pulmonary hemorrhage. I had a desk job but it was stressful and very combative so I ended up having to be of for 6 weeks again about 5 months later. I went in for a follow up appointment with my specialist and she took one look at me and refused to allow me to work until I had rested.

Since that time, I fully return to the same position, which had me travelling regularly, overseeing a large department, as well as developing programs for a major health insurance provider. Unfortunately, the doctors are right when they say stressand lack of self-care will cause major complications! I managed to do thiscrazy work schedule for an additional 7 years before I had a relapse two years ago. It forced me to change positions into something more flexible as well as let go of that crazy schedule. I do currently continue to work full time within the same health insurer, but I am more aware of the stress I take on and havelimited my travel significantly which has helped.

I am in my early 40?s and have a family to support and a long time to support myself, upon diagnoses I too feared I would not be able to provide for myfamily but actually it has made me be true to myself and build a better qualityof life. Not only do I only work my said ?work hours? but I have time forfamily and friends which prior to WG I did not. Took me a long time and struggles to accept my new normal and be grateful for what it has given me.

[whatthewhat]

In most of the pediatric cases I know of, the child is able to go back to school and maintain regular children's activities, although they very very rarely re-achieve the level of athletic prowess so many of them had before. Some kids do need to be homeschooled due to immune-suppression & germy conditions in regular school. A couple of kids I know who survived diagnosis were not able to go away to college or participate in a regular college class schedule, but most do.

[NatriceRomeo]

I was diagnosed when I was 17. I was at the end of my 12th year in high school. I continued onto university. I work in the healthcare industry. During this time I had several relapses.I was able to work full time till about a year and a half ago. I went part time due to another relapse and started Rituxin. I am now feeling much better & am searching for full time again.
I think everyone is different.
Natty


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