How do handle the fear of going back to work?

Hello...I was diagnosed on June 21st, 2011. Everything happened so fast! Dermatologist did not recognize the rash all over my legs or the Hugh bruises that had appeared so she took a biopsy of my leg. She then told me I might want to see my Primary dr who I promptly called when I left her office. 2 hours later when I saw him he knew immediately what it was and drew blood...He called at 6AM to tell me my to go to the hospital ASAP as my count was 6K. Stayed for4 days, 8 bags of platelets along with various tests and IVG treatment. Released on Friday with a CBC test on scheduled for his office on Tuesday. Test was down to 2K so my hematologist sent me straight back to the hospital where I spent the next 3weeks. 4 treatments of Rituxin and 1 N-plate. Mega prednisone is kicking my tail but I just went down to 5mg every other day starting this week. As you can imagine I am a very happy camper coming off of this especially now that it was determined it was not working for me!

It has been determined that I will do a Rituxin treatment this coming Monday then once a month, and the N-plate as needed when my count goes below 100k. All subject to change as you all know

I have been out of work for 3 months. Scheduled to go back to work on 9/26 and I an scarred to death! My mind still feels very fuzzy and my musles feel so weak and shaky even though my numbers look good but they continue to drop most weeks.

Hey Debra, sorry to see your not feeling to good, this thing really shakes you up for a while. You will be ok though. The muscle weakness could still be the prednisone, same with the fuzzy head but it will go. Three months is a long time to be away from work and it is only natural that you would be a little nervous, I was off work for nearly six months, but I had heaps of other health problems as well.

I am sure that you will get back into the swing of it again and your strength will return, give yourself time and your confidence will return. It did take me time to get back to a new kind of normal and I did reduce my hours but I am now going ok.
I wish you luck and don't forget there is a great group of people here that will support you, so stick around, throw out the questions and we will all try to help you.

Milly

Hi Debra. Welcome to the boards. I had the same problem with Prednisone. Didn't do a thing for my counts. I never want to have to do that stuff again! You did Rituxan in June or July and your doc wants to do it again already? I believe that's hardly enough time to see if the first doses were working. I can take up to 12 weeks to show any effect. My first doses of Rituxan did work for 7+ months and I was getting NPlate at the same time too in the beginning. My 2nd round of Rituxan didn't do a thing. What do you do for a living? I know it can be scary going back to work, I was off for almost 2 months with counts at 1 at one point. It will be ok, just go slow till you get back in the groove.

How do you get on with the employer? I am asking in that if you're okay and it a job that let you, why not try going in for a day and alternate days for the first week whilst you build up strength? Do you have to start back all at once? Though am more than aware of money etc but it may be good for you to do the first week alternate days rather than 'bang' straight back and you end up with a cold or something through being tired....
Just a thought and you know your own work situation to think about going in alternate days etc whether its practical. Don't be shy about ringing them and talking it through.

What do you do for work? Do you enjoy it and are you looking forward to going back, or just dreading it?

Debra - what are you afraid of? A lot of ITP patients continued to work while counts were down and during treatments, so I'm not sure where the fear lies. Prednisone can be rough, that's for sure, but just keep reminding yourself that it's just the drug making you feel that way. Staying active will be a benefit in the long run.

ITP can be scary at first, but the more you read and learn about it, you will find that it is livable. Not always pleasant, but definitely do-able.

Using Rituxan as a maintenance treatment isn't the norm for ITP. I would probably question that as it seems like overkill. N-Plate or Rituxan alone should do the trick, as the goal is to keep counts above 50k, not necessarily to maintain 'normal' counts. Doing both at once, you won't know which is working and each can have it's own possible side effects.

Debra, I was one of those people that was totally honest and upfront with my work about what was wrong with me (there was a few different things so I really had no choice but to explain to them, needed a few surgeries for tumours and fibroids as well) but I am mostly good now, RA gives me more problems then ITP, BUT I am sorry now that I have been so honest as I am now treated like some sick person and I am not that at all, I am a productive person and this year I have had one day leave for illness.

I am currently looking for a new job because they just can't move past this when all I want to do is get on with life. So my advice is to have a think about the effect this will have in the future and I know not all work places will have the attitude that mine does but it does sometimes happen.

Thank you for your encouragement and advise.

I am very lucky to have a wonderful relationship with my boss and company but have been told I need to come back hitting the ground running! We are really slammed and we take multiple-tasking to a whole new level. I am salary and it's nothing to work 60-80+ hours a week. The only restriction that my hematologist put was that I could not travel for work once he heard my job requirements (which I do AND with a big trip planned for 4 straight weeks in Nov/Dec).

Sandi...my dr. Explained that the N-plate builds baby platelets and the Rituxin builds a shield around the platelets. I will ask him this question Monday as you bring up a good point.

Milly...I carry our insurance and would have a really difficult time replacing my job or income so hoping to keep it if possible Too much time off in the beginning will not be good. Use my dad's logic of fake it till you make it is what I am hoping will carry me!

Thank you again for your support! I have lots to learn and I know that work doesn't count as much as life as my husband and friends say but it's hard do one without the other. Please don't take this as me trivializing the seriousness of what anyone on here is going through because I am focused on the work aspect but you all have given me hope and I am no quitter!

This go around is different then the hemolytic anemia I had just over a couple of years ago so as the song says Jesus take the wheel!

Debra:

I wouldn't tell you not to focus on work, I was the same way. Work always came first (after my kids). Still does. I won't lie, it was tough on the high Prednisone doses and during tapering, but I made it intact. I also have one of those jobs where you are run into the ground daily. I've actually quit a few times because of the stress, but retracted it because I love the job perks and couldn't get them elsewhere. I also need the health insurance.

The reason I'm questioning the Rituxan maintenance is that it might be unnecessary. Your counts could stay up on their own or with the help of N-Plate, and you'd be getting the infusions for nothing. Why put a heavy duty drug into your body if you don't have to? The problem with Rituxan maintenance is that you might think the monthly infusions are keeping your counts up when they might just stay up there without it. You wouldn't know that though if you keep getting them. Over time, all of these drugs that they keep pumping in begin to do more damage than the ITP itself. Many of us have ended up with years of remission from Rituxan. Some people aren't that lucky, but some are and I never thought I'd be one of them.

Good luck with your appointment. I hope your counts are good!

Yeah Debra I am sure you will be fine sometimes just being on prednisone makes you doubt yourself but once you are there you will be ok, it's a funny old world isn't it I sometimes wish I could go back to when the closest thing to a platelet I knew was a plate that I ate my dinner from.

Just take it easy and find yourself a safe spot where you can go and just breathe for a while if you feel like time out.

Let us know how you go!

I agree with Sandi -- "Rituxan maintenance" is pretty much an oxymoron. Rituxan doesn't maintain counts, it seeks to put you into remission. Taking it every month seems like a complete waste. If the Nplate is working for you, take that. If it's not, try something different.

Fear is the biggest stumbling block I believe from what you are saying about work. Go to work and hit the ground running and if you are ill then take care of it from there. I can vouch for anyone that the longer one puts work off, then we never get back into it. I bet I have the biggest work fear of those on this board, seeing as though am not in work due to fear of it - though nothing to do with ITP just my own self confidence.

But honestly, if the consulstant has okayed it, then you can go back tomorrow or monday. Get it over with. I wouldn't want to hear you are still at home in a month without having tried - due to fear of going back in. The hardest step is that first day back but once back you will be greatful in the long term. The longer you put it off, honestly, the harder it becomes. A little bit of fear is normal, we all go through it or so my congnitive behavioural therapist has told me. First day back after the holidays stuff. See it like that.

You are doing it for you. It honestly does get harder the longer you put it off. So bite the bullet, and pray if that is your thing seing as you mentioned a church song that people wont know if the don't go to that style of church or go at all. share it with God and I would love to read on Tuesday how your first day back went on Monday. I be thinking about you all weekend. ITP is not a reason to be off once we are out of hospital unless your consultant has specifically said no - because of your job. Take care and I am hoping to read of your first day back on tuesday

Thank you for all of your confidence when I was concerned about going back to work 5 months ago! With that being said I did not make it back until 11/2011 so it's only been 3 1/2 months because I ended up with shingles on my face and in my eye the week I was scheduled to go start back! So back on steroids and lots eye drops daily. I did make it back and sure was worn out just trying to catch back up...but I did it and have done ok! Back on my game and have not missed work except a couple of treatments.

Sandi, I did chat with my hemo dr and I have only been taking my treatment every other month now and will be stopping after 2 more. Then taking a break since e mentioned that we should not see a drop rot at least 6 months! And mbar not even then!!! Thank you encouraging me to talk with him

Debra - I'm glad you talked to him and worked things out. I'd just worry about excessive medication - like taking antibiotics continuously to keep from getting sick.

I'm glad you're back to work and doing well!