Short Term Disability for Remicade Days?

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Charmin
Regular Member


Date Joined Feb 2008
Total Posts : 53
   Posted 3/27/2008 5:19 PM (GMT -7)   
Hi Everyone,
I am fortunate to have a job with good benefits. I was just diagnosed with severe pancolitis March 1 and was hospitalized for 2 weeks and at home now for almost 2 weeks. I know we are all different and I can't give you all of my details, but I don't want to go back to work too soon if indeed people with experience think "we" need more time off.

I don't know what to ask for and I don't want my doctors to think I'm milking the system. I have NO idea what their conversations are like with other UCers.

Have never been sick (ever) before. On prednisone 35 (taper) and had two Remicade treatments so far. I lost 18 pounds while hospitalized and I'm just weak, but having only one BM a day (or every other day!). I see the doctor next Monday. I have a desk job, but I get up a lot to see patients in a hospital.

Has anyone heard of taking a "disability" day for Remicade. I'm told I will get 50 mg of benedryl with each and every treatment. I know after I had kids I took every Wednesday off for 10 weeks.....

Thanks.
Hope to hear from someone. Any input along these lines would be most appreciated.
Carmin

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 3/27/2008 5:31 PM (GMT -7)   
You may or may not need the Benedryl. I don't, and I have no fatigue at all after the infusions. I usually get mine on a Saturday or Sunday morning and then do my usual weekend errand running. See how it goes with you and cross that bridge when you come to it, as with everything here, we all react differently and some people can push on more than others. Or at least, some people have to tough it out, while others have different options available to them. If you feel you need to take disability and it's available, yeah, I guess so. But you may not feel you need it once things start.

I had a really rough go of it the end of 2007, lost 20 lbs in less than two months, anemic, weak, headaches, two trips to the ER ... but I work for myself and no work = no $$. Plus, I really enjoy what I do and feel better when I get out there and keep busy. I managed to just miss one day, although all I did was work and then come home and sleep pretty much until the next morning. Once the iron injections started working my energy level and appetite returned.

Meesh
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, tapering attempt, down to 10/5 mg. alternating daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1 - 12/29/07 weekly Venofer (iron) injections; <S>9 mg Entocourt EC</S>; Xanax as needed; Lexipro 10 mg, <S>Rowesa;</S> <S>Asacol; Colazal</S>; Bad reactions: Imuran (2/07)


sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 3/27/2008 5:35 PM (GMT -7)   
I think every state or employers disability benefits are different.  I did use disablility with last flare, but only partial benefits.  I also was afraid of milking the system or being viewed as a slacker.  So even though I could barely make the 20 minute drive to work and barely had the energy to climb the stairs because I was severely anemic I continued to work.  But couldnt get in to the office until around 10 and left at 3 every day.  The rest of the hours I used disability benefits.  I did that for about 3 months.  Looking back I should have just gone out of work completely, maybe hospitilized and concentrated on getting well.  It may have been a quicker recovery.  I havent had remicade infusions so I dont know about recovery time needed, but I think if I ever again feel I need to use sick time or disability I just will.  In the end your health is the most important thing.

 
sore_guts
 
left-sided UC
400 mg Asacol 4 pills 3 times/day lialda 1 pill 3 times/day
making some very light attempts using Rowasa enemas just cant seem to do these
iron supplements 3 times 1/day
multi-vitamin 1/day
Digestive Advantage Colitis formula 1/day
 
 


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 661
   Posted 3/27/2008 6:38 PM (GMT -7)   

I don't know how Remicade works with the infusions and recovering, but if it's only a day here and there it seems to me you'd be looking at FMLA along with your paid leave (sick, vacation, etc) vs being disabled and out for a length of time (unless that is what you're talking about and I misunderstood).

Just my input


Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Pancolitis (Mild to Moderate)
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 


Charmin
Regular Member


Date Joined Feb 2008
Total Posts : 53
   Posted 3/27/2008 6:48 PM (GMT -7)   
Thanks -- that is the kind of thing i'm looking for. I'm so new at this I forgot about FMLA! I will look into that for sure!! I'm also wondering how my doctors will view my request. I was thinking maybe it is standard procedure for them to file the paper work that way??

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 3/27/2008 8:14 PM (GMT -7)   
You said you have good benefits at work. That probably includes some disability insurance. You should consult with your HR person to see whether you could be considered on "partial disability" and get disability pay just for the one day a week you will be out. I don't know how that works, but it might be a possibility.

The benefit to being out on disability is that you would get your disability pay. FMLA guarantees your job for a period of time while you're out for an illness. It's up to each employer whether you get paid or not during that time. At worst, you could take the days off as "intermittent FMLA" (or something like that) but the days would not be paid. Still, it would give you some flexibility in your schedule, which would probably be a great relief.

Either way, the HR person who handles disability benefits at your job should be able to give you advice about the best way to work it so that you take the fewest (or no) sick days. That HR person should also be able to give you whatever paperwork you need your doctor to fill out.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/27/2008 8:51 PM (GMT -7)   
Your ability to take disability benefits for the days you get Remicade will depend on what your employer's policy says. Typically, short-term disability doesn't kick in until you've been off for 2 weeks. You should, however, be able to use any accumulated sick or vacation leave. Since you've been off work, I assume you're on FMLA. Your doctor should be able to stipulate that you can return for half-days or five hours, or that you can return but must be out one day every 8 weeks for your treatments. This would fall under FMLA until your accumulated days off for the UC reached 12 weeks, and that protects you from being terminated.

You might talk to your supervisor about whether flexing your time would be possible or about the possibility of completing some of your work at home. When I go for my infusions I take my laptop with me and work at least part of the time I'm there. My employer has been able to be very flexible in accommodating my special needs, but I made it possible by talking frankly about it with my supervisor.

Also, if you know that Benadryl makes you to sleepy to function, ask about taking Zyrtec instead. My infusion center switched and gives everyone 10 mg. of Zyrtec now instead of Benadryl because they had so many people who had to stay for hours waiting for the Benadryl to wear off so they could drive. Zyrtec is less likely to make you tired and sleepy.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 3/28/2008 8:40 AM (GMT -7)   
Yes, I switched from Benedryl to Loratadine (Claritin) so I wouldn't be so drowsy. Works like a charm!
Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2008 8:49 AM (GMT -7)   
I am not on remicade but I almost was and this was my plan as agreed w/my boss.

Remicade infusions are typically every 8 weeks, so that would be 6 days a year.

I have 6 sick days per year and 15 vacation days per year. I could use any of those days or I could work from home so I did not have to use up as much. For example I could use half a sick day and work the other half from home (I have a 45 min commute each way).

I dont think people need any more than the day off for an infusion? But maybe there are people who it affects more?????

It takes your body a while to recover from a serious flare.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 3/28/2008 9:09 AM (GMT -7)   
Am I missing something? Why does the infusion have to take place during working hours? And if it does, why does a full day have to be taken for a 2-3 hour procedure?
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, tapering attempt, down to 10/5 mg. alternating daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1 - 12/29/07 weekly Venofer (iron) injections; <S>9 mg Entocourt EC</S>; Xanax as needed; Lexipro 10 mg, <S>Rowesa;</S> <S>Asacol; Colazal</S>; Bad reactions: Imuran (2/07)


Charmin
Regular Member


Date Joined Feb 2008
Total Posts : 53
   Posted 3/28/2008 6:30 PM (GMT -7)   
meesh - i like your take on this too. maybe my doctors will react the same way. however, i'm told the clinic is m- f 9 to 3 and I work the same hours. supposedly i get benedry IV every time. i have only had two treatments so i don't really know how this will all work out. i was totally wiped out after the infusion, but still in a flare so it is hard to say how i will feel now that i feel better. i was surprised i didn't go right back to work after by two week hospitalizaton. never have been on "leave" before. i'm not looking to be in a "sick" role, but i don't want to get to the point i was in the beginning of march - almost having my colon removed!!

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 3/28/2008 8:00 PM (GMT -7)   
I guess I'm fortunate to have a clinic that is open seven days a week, although they close fairly early in the day, they open practically at the crack of dawn (not the best time for most of us with UC!). Well, good luck with it all.
Diagnosed UC April 27, 2006
Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, tapering attempt, down to 10/5 mg. alternating daily. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums
12/1 - 12/29/07 weekly Venofer (iron) injections; <S>9 mg Entocourt EC</S>; Xanax as needed; Lexipro 10 mg, <S>Rowesa;</S> <S>Asacol; Colazal</S>; Bad reactions: Imuran (2/07)

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