medicated remission fatigue

[eyeopps]

Hi all
It has been a while. Treatment went well. I am in what I call "medicated remission". That is I am still on Prednisone (4mg), Imuran (150mg) and Mylan-Risedronate (150mg).
I was off work for 10 months then tried to return to work. I work for a small company (25 employees). It is a high stress environment. That lasted 7 months. The fatigue became unbearable. I could barely manage to finish a days work. Even at that I was so tired I could not trust my work and therefore often took 3 hours to complete what should have been done in 45min. On my 45 minute drive home (I live outside the city) I would often have to pull over and rest as I could not manage the drive in one stint. Once home I would be asleep within 10 minutes, awoken by my wife for a quick supper then back to bed. I could manage 2 to 3 hrs of sleep then awake extremely tired. Eventually I collapsed at work.
I am suffering this fatigue even though I am in "medicated remission"
I reapplied for disability with my company plan. There was no issue with the first application. This one however has been rejected as they apparently do not recognize the chronic fatigue.
My question is there any good information about GPA patients or auto-immune patients suffering with this level of fatigue? I have found a good deal of information about the fatigue prior to remission but very little after.
can anyone help??

thanks
andy

[renidrag]

I am in drug free remission and still suffer debilitating fatigue. I know of no answer to it. Just one of the WG gifts that keep on giving. I am also on SSDI and have been since one year of WG diagnosis. I doubt fatigue alone would qualify for disability however with your meds and history, being around a lot of people with a questionable immune system should help. Most people find the need to hire a lawyer who specializes in disability cases. Best of luck.
Dale

[Pete]

I don't recall anyone mentioning mylan risendronate on the forum before. How does it fit into your treatment plan? I'm wondering if fatigue is a side effect of it or if there is a drug interaction causing fatigue.

I agree with Dale in that you may need a lawyer to navigate the disability application process. Good luck!!

[Birdie]

is there any good information about GPA patients or auto-immune patients suffering with this level of fatigue? I have found a good deal of information about the fatigue prior to remission but very little after. can anyone help??

Andy,

I can tell you where I'm at with fatigue. It's so bad that I'm in a wheelchair to leave the house. Most of the time I can't even go into a Circle K store, too much walking and standing in line. Grocery stores are out of the question, even their motorized scooters are too much to handle because the seat sucks. It takes far too much energy just to hold myself in the sucky seat that belongs on a small row boat.

First, Wegener's itself is enough to qualify for Social Security Disability. They recognized it as a terminal condition and as such, rushed my application in about five weeks. Normal, without the rush, is at least six months. If the insurance company wants to deny you on the basis of Wegener's alone then fight them. They are wrong. Morons in low pay jobs are constantly making decisions like this at insurance companies. Don't stand for it, raise hell.

Second, fatigue is also enough to get SSDI. So... same as above. The insurance company has no justification.

Third, you are immune compromised. All you need for SSDI is to show infections while working, so once again the insurance company has no justification.

First, second and third... are all the things I was told by the SSDI people, except for the insurance company having no justification for denial, that's obvious.

So you are disabled unless you claim to be able to work. It's all in how the disability claim is handled.

Operations like insurance and SSDI don't function in any comprehensible fashion. Fortunately I had several very dedicated people at SSDI to help me get approved. The smallest things (same with private insurance) would have resulted in denial. For instance, listing my diagnosis date as the date of disability. The paper shufflers would have instantly denied the claim if I worked one day after that date. Morons? Low paid paper shufflers with a mountain of claims backlogged. Their goal is to get the claims off their pile.

Good luck, don't give in... get doctor to clearly write that you are not able to work.

Gary

[eyeopps]

Gary
I should have mentioned that I am in Canada so SSDI (CPP Disability here) is very different. You have to be so disabled it is almost ridiculous. If you are able to do one hours work they do not consider you disabled.
I am investigating legal avenues.
thanks for the help

[eyeopps]

Pete the mylan risendronate is taken once a month. It is to counter the potential bone damage done by imuran. I have been on it since I was on Cyclophosphamide (7 infusions).
Andy

[woz]

Hi Andy, I have been remission for 18 months, I still take azathioprine every day, I have good weeks, and bad weeks, I work full time, and struggle sometimes to make it through the day, coffee is my friend ( only have 2 a day), and I eat a lot of fruit for that bit of a healthy sugar energy hit.

Regards Woz...