How to manage steroid and work

After 2 shots of RItuxan and a Dex pulse for 4 days, my platetes counts went up briefly and again dropped to below 10k. My doc wants me to start taking Prednisone. I remember how miserable my life was when I was on pred for 60 mg a day. Now he is going to put me on 100 mg. I just don't know how I will handle all the side.effects while working a full time job. I have a office job, although not very physical, it does involve a lot of analytical thinking. I think it will be difficult when I am on steroid because steroid makes me irritable and not being able to focus.
I just used up all my PTOs for my maternity leave so taking time off is not an option. And our financial situation does not allow me to quit. I would really appreciate your experience in dealing with steroid while working.
Jennifer

Jennifer:

I went through it, but don't know how much help I can be. I have an office job too and the work is stressful and meticulous. I work with numbers (other people's money) and errors are not an option.

I remember not even being able to speak coherently; I stuttered all the time because my brain went faster than my mouth. During one phone conversation, I repeatedly called a woman "Spacey" instead of Stacey. My co-worker eventually held up a sign that spelled it out and believe it or not, that helped. I remember feeling wound so tight that I shook and could barely think straight. I'd get phone call after phone call and the interruptions were more than I could handle. Deadlines and the large work load were impossible.

Thinking back, I don't know how I did it. Taking off was not an option for me either. I can think of a few things that helped, and here they are:

When I got to the point where I was ready to explode, I went into the rest room for a few minutes of time out. I would just breathe, and sometimes I would actually cry. It was a good way to release the tension and I would go back at it when I felt calmer.

I realized too after a while that I was taking myself too seriously and had to lighten up. I learned to laugh at my stupid episodes. Some of the instances were really funny and I had to try to see it that way. Laughing my way through it helped too.

I also learned that the only way to get through it was to take it one day at a time. Every single night when I went to bed, I swore I couldn't get up and do it all again. But every morning when the alarm went off, I got up and just did it. Eventually the doses got lower and lower and the day did come when I took that last pill. Of course, it took time after that to get back to normal, but it did happen.

At that time, I had 3 kids in school and they all had activities after school that I had to take them to. I'd get home from work, pull in the driveway, they would run out and off we'd go. We usually didn't get home from that until 9 or 9:30 at night. Then came dinner and house cleaning. My husband travels during the week, so it was all me. Needless to say, sleeping was not a problem. I was exhausted at the end of the day (usually midnight).

Here is one thing that might give you hope. Rituxan could kick in at any time, in which case you'd be able to get off of Prednisone much faster. It might only be a few weeks, which is much better than a few months. Keep reminding yourself that it is temporary - make that your mantra.

Unlike Sandi I just could not do it.

I am in banking and my brain was just to foggy to deal with anything, I couldn't focus on a movie let alone handling some one else's finances. I was on 75mg a day for about one month and then tapered over a period of ten months. I was shaking all the time and really just a mess.

This time was my first encounter with ITP and was still learning the ropes on how to deal with the meds, the Doctors, and the ups and downs of ITP.

Prednisone has cost me so much as far as my work is concerned, I was a manager and because of the side effects I gave this position away, changed to a lower job and less hours. I did try to battle through it but in the end something had to give and I chose to limit the work. I was very lucky because I have unlimited sick leave at work and in total I had about six months on paid leave, I really feel for people that don't have this.

I think though what Sandi said about the time out thing is probably the best bit of advice, you have to give yourself time to deal with the build up of emotion, find a quiet area and just breathe.

I don't think now I would allow myself to be on high dose steroids for such a long period of time. I have learnt so much from the people on here that I am now able to make a more informed decision on my health and treatment options. I think in my case the steroids should have been stopped after about six weeks.
I think that Doctors also need to look at quality of life and sit up and take notice of the effects of steroids have on your life.
I do really wish you well on this journey and hope that you manage to get through this and I hope the Rituxan kicks in and you don't have to be on them for long.

I just kind of 'went with it' at work.
I'm an engineer in sort of a 'disaster resolution' position. Basically when issues come my way, it needs solved immediately....and is usually a total mess involving irate customers and millions of buckolas.
During the months of my own 'Prednisone Dark Times', I worked 40-hour weeks in my engineering job, I also fronted a bar band on weekends, and I ran my side business of manufacturing and supplying silicone tires to slot car enthusiasts around the world. So I worked 3 jobs while I was on the high Pred doses.
Yes I was a mess on Prednisone, but I basically just let myself go with the flow and did what I had to do regardless. Like the saying goes, "A man's gotta do what a man's gotta do". Or on weekends it was; "The show must go on"....etc.
I did avoid any social situations where I might get overly irate, my wife ran a lot of interference for me, and my friends and boss were all very cool about everything.
But there were entertaining aspects to high Prednisone doses...for me it was funny hallucinations. One morning I arrived at work (usually the first one there) and was walking toward my office, when I saw a panther walk around the corner and then into my boss' office. Perfectly normal....no worries....nice kitty.....
Another day I was working in my shop making up an order of slot car tires, my wife came into my shop, looked at me and left. That was odd, so I went upstairs and asked what she wanted. Surprise! She had not been in the shop at all.
Another day in the shop....I looked down and saw I had one left leg and two right legs....I counted them twice.
Don't even ask what it's like to on Pred to sing and play guitar for a bunch of drunken bikers until 2:00am.
It also made driving to and from work a whole lot of fun.

But, I understood what was happening and just worked with what I had to work with. Then I got off the crap as soon as I could do so. I will try most anything before I would go back on high doses of Prednisone for any length of time. Don't like Dex either.
Oh yeah....I'm no spring chicken at 58.
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Wow that's a great story weirdjack, you sure made my night I have not laughed so much for a long time. We sure have some experiences on Pred, I bet there are some really funny stories from different people on the board.

I really do admire people that can continue day to day activity while on the dreaded Pred. It does seem to me that it is common that our families come to our rescue quiet a bit, I know my husband did for me, he would often step in when he could see I was losing control.

I like you will try anything before I go on high dose again.

Thanks again for making my night,

For me I just struggled through it. Its hard but I couldnt not work and had used up all my time off already. Some days were better then others. and some days I could just not function.

It was awful working on prednisone, but I had to do it also. I am an occupational therapist, working with young kids with disabilities in a school. What helped me was confiding in a couple co-workers, the principal of my school and my boss, the special ed director. Before a meeting that I knew was going to be long and difficult, I told him I was on prednisone (did not go in to why) and that I wasnt going to be able to sit for a 3 hour meeting. He told me he had been on prednisone too and he couldnt sleep, was mean, crabby, and couldnt stop eating. He let me go first in the meeting and then leave. I know most of us dont want to talk about our health issues too much at work but there are many people who have been on prednisone, for asthma, poison ivy, hives, etc. People can often help accommodate for you if they know you are having a health problem but are making the effort to do your best.

So maybe finding someone at work to talk to might be helpful. I also, like Sandi, would go into the bathroom and do some breathing, try to clear my head.

Good luck, and hopefully the Rituxan will kick in soon and you can taper off (also not easy)

Hmmmm weirdjack wrote:
<<< Basically when issues come my way, it needs solved immediately....>>>

weirdjack, you have a Pittsburgh accent - are you a neighbor of our moderator?


As to the topic of the thread - other than being a little bad tempered, the two years I was on pred it probably was overall beneficial at work since it gave me some energy which I totally lack when my counts are low.
Erica

OMG I am a ditz. I was thinking "Who is the moderator?" Do you think I have a Pittsburgh accent? I don't say 'yinz' or 'haus' or anything like that. My sister has a heavy Pittsburgh accent.

I think I win the "WIMPY WORKER AWARD" don't know how you all done it,
Milly

One day at a time....no choice. I didn't have any disability leave.

Sorry didn't mean to sound flippant, just silly Aussie humor. I do really feel for all that have to work and take this medication.
I think that if that was the case with me I would have lost a lot, my home, my job.
Milly

You got it! I had 3 kids that needed to go to college and a mortgage, etc.

You didn't sound flippant at all. You would have done it if you had to. And I wouldn't have done it if I didn't have to.

Bear in mind that I got off Prednisone as soon as my hematologist offered alternatives.
We may have gotten along with our lives on the stuff, but it really isn't any fun.
I 'rolled with it' because there wasn't much else to do and the world turns regardless.

I'm not from Pittsburgh. I am unsure how that accent would transpose into text.
However, I am currently sitting in my office....located on Pittsburgh Drive.
Perhaps the street I work on is coming through in text?

.

I would translate like this:

If yinz want to go to the mall n 'at, come to my haus at 3.

Pittsburgh speak is also characterized by the missing 'to be' as in 'this needs done' instead of 'this needs to be done'.
Erica

"This needs red up".

Can anyone translate that?

Sorry for the highjack. Sometimes we get carried away.

To this little Aussie it is all too funny, can't wait to find out what 'This needs red up" is.

Jennifer:
I am sorry to hear that you will be back prednisone, especially at that dose. I was on prednisone for only a month last year, before it drastically failed for me (the world became safer place after I stopped.) Remember to excuse yourself remove yourself from situations, even momentarily, when you begin losing control. Practice Yoga and focus on your breathing.

red up is cleaned, right?

yes, that's it! Erica wins!

I am in the same boat i have 3 grandchildren and the days are long I work in an office and have just got through having an intravenous treatment called Rituximab for 4 weeks it didn't work i am now on prednisone again

When did you finish Rituxan? Sometimes it can take 6 to 16 weeks after the last infusion to see results.

This topic is so funny - I'm loving it! Thank you for cheering me up, me on my measly little dose of pred & all.
I was SO determined never to use it again, I think the fact I relented under pressure is partly why I feel so awful on it. :S
There's a local girl advertising yoga/meditation sessions which I am considering. Breathe in / breathe out . . .
mj