Vacation / Sick Days

[ITP_September_2014]

All my vacation and sick days go to Dr visits, colds and naps. I hate feeling like i'll never get my life back if I don't find a cure. How do others manage a normal work life and dr visits? The people at work usually give me dirty looks when I need to leave for an appointment.

[Pollyangel]

I'm fortunate... while steriods or immune suppressants didn't work for me... Revolade / Eltrombopag has increased my platelet count.

My ITP was caused by either a virus or antibiotic... and my consultant doesn't have any concerns about my spleen function.

Hopefully you will get a diagnosis and treatment that will help

Px

[ITP_September_2014 in reply to Pollyangel]

I tried Promacta for less then a week and had a terrible allergic reaction. I also had a bad reaction to IVIG, swelling in the brain.

Now looking for a new option, thank you

[Pollyangel in reply to ITP_September_2014]

Jeez... you have had a rough time of it!

[Ratnakar_83]

I am suffering from itp since July 2015.first I take 80 mg steroids daily upto 3 months and my platelets count 198000.then my doctor decrease the dose of steroids upto 5 mg and my platelets count decrease 18000.then my doctor advice me Revolade 25 mg daily and my platelets count is now 150000.first I take Revolade 25 mg daily upto 2 month after 2 month decrease my dose 5 pills in one week upto 3 months.Now my platelets count stay on 150000.

[Lynwoodley]

Hi I'm lucky I have my own company but don't worry about other people stress makes the condition worse so just think about yourself and ignore them or better still print out about ITP and give it to them then they will feel bad, because you can't see it people don't understand take care

[Ltinny in reply to Lynwoodley]

Spot on!

[Milane]

I don't know where are you located but I was on disability when going through the various treatments until remission. Platelets are steady at 59 to 61 and back to work. You may need to check with your HR as to what type of benefits that will accommodate what you are going through. My company has employee assistance program and my specialists doctors provided my work a letter to allow accommodation while I go through treatments which really help since its doc statement. I also showed my mgr pdsa.org website for additional info. Good luck!

[Ltinny in reply to Milane]

Good point. I used FMLA while I worked. It allowed me to get treatments and Dr. appts.

[Hidden]

Two places I worked for I had to take leave for appointments and any treatments which left very little leave for other activities. If had too many days off sick you were then performance managed.

Glad to say my current place lets me have time off for appointments and I can even work from home if I'm not feeling up to travelling. It can be so stressful when colleagues and managers are not supportive, which in the long run does not help.

[Diamondqueen]

Tell them to Google itp and they can read about it for themselves. As long as your boss knows reason u shouldn't worry what they think. Good luck. I've been going to hospital for 10 years, weekly to start with for 7 years now monthly. Xxx

[eciardullo]

You have to let others not bother you, its about taking care of yourself, don't worry about what others think. I was also fortunate and went on long term disability, it was a godsend I had that coverage as I also underwent a splenectomy, when meds did not help I was advised that having my spleen removed would have, well that didn't quite work either afterwards did the IVIG, Revolade, gave me blood clots to the lungs, liver and legs so had to go on blood thinners and stop that. Last try, all the while still on prednisone, which I pray I have to never go back on, Rituxan, I believe did the trick my counts have been well over 150 for almost a year now, keeping my fingers crossed and I am finally off of prednisone. I tell you if my platelets drop again which they can of course I will be prepared and am better educated about ITP, I will definitely ask for anything besides prednisone, because of this drug I have fibromyalgia...So its been a fun ride, finally see the sun at the end of the rainbow, recently went vegan and lost 56 pounds of which I put on due to the prednisone...feeling great, wishing you well, get ready for that ride and the best thing you can do is educate yourself on ITP, I think I know more then the doctors now, and best of all I am not afraid anymore...

[Ltinny]

I worked 17 years in an office, and it got to the point where my doctor told me I had to work from home or go on disability. That was for my lupus diagnosis. I barely made it through the morning at work without taking a nap in the lady's room for 10 min. If you can work from home at all that is an option. I had to change careers to do it, but it has been the best advice I ever received.

[Ltinny]

Also, once out of the office environment, you will find you have less colds and all the germs that go around. I found that people don't understand when you have doctor appts. routinely, unless they have experienced the same. They should not judge, you are doing what is necessary for your health, it is important. I solved that by working from home, pretty much make my own schedule; still deal with the fatigue from ITP and lupus, but at least I'm home in my own comfort.