Dealing with Professional Life

Hi,

I am a 23 year old guy who has been diagnosed with ITP about 6 months back and i live in India.I dont know if this discussion already exists or if i am the first one to start it but i just had a few queries as to how ITP has affected your professional life. First a brief history of my ITP:

I was diagnosed with ITP in Aug 2010 when i went for a post dengue follow up. My platelets had fallen down a month before that but the docs assumed it was dengue and i had 2 platelet transfusions done. My counts went up and i was discharged but a month later on a follow up i found out that they had fallen again so i went and saw a haemo. He diagnosed me with ITP and put me on prednisone(60 mg) to which my body responded but as he tapered it the platelet counts fell. Subsequently i tried dapsone, dexa and danazol and none of them seem to work.My counts fell as low as 2 but there was no signs of bleeding so my doc told me not to go for an IvIg. My family and me then decided to try rituximab and as of now i have finished 3 sessions which went about normally and my counts have still not improved (they still at 3 but my doc said it will take atleast another week or 2 for it to kick in so keeping my fingers crossed).I am still on prednisone (10 mg/day) and danazol (400 mg/day) and i desperately want to get off these 2 so waiting for rituxi to kick in.

Getting back to why i started off this discussion in the first place, My doc told me that i have nothing to worry about (nothing much anyway) and to go about my normal life but to avoid injury prone activities. I have so far had no signs of bleeding except for a small blister that appeared on my lower lip while i was on my way for my third dose of rituxi.

I work as Business Development Executive for a mid size IT company and my job takes up most of my time during the week, i work almost 10 to 6 and have not really slowed down too much with work. Intially i did take some time off when i was not really sure what ITP was and i was a bit scared but now over the past 2 months or so i am back to normal work (with a count of 3 as of last week).Physically i feel fine and i dint really have any issues with fatigue as well. I sleep well at night and have a good appetite.But over the past 2 or 3 days i start feeling a bit chilly in the evening and also started feeling a bit tired after work. It would be really helpful if someone could help me out with the questions that i have.

1. My Doc told me to beware of internal bleeding especially in the head, how do i know if i have internal bleeding? I mean what symptoms show bleeding in the brain?

2. Should i be taking it easy at work or is this just the effect of rituxi and the medication?

3. Do i have to be bothered about the chills or is this the effect of rituxi?

4. My work generally involoves a bit of travel but during the rituxi treatment time i wont be travelling. Is it safe for me to travel once i am done with my fourth dose of rituxi?

I am sorry for taking up so much of your time but any help would be useful as i am still trying to understand my way around ITP.

Just a clarification, the chills i am referring to in the 3rd question are the chills that i have been experiencing in the evening over the past 2 or 3 days

Hello M (hope you don't mind the abbreviation),
I'm new to ITP but I can help a little with the first question.
You can find out about signs of a brain bleed by looking up wikipedia for symptoms of CVA. I had a look and it seems pretty clear and comprehensive.
Try not to stess :silly: .
Best wishes, Sally

Hi, no your not taking up our time, that's what this forum is for. I haven't really changed anything with my job, but I don't have an extremely physical job. I am a telephone service operator and sit at a desk taking phone calls all day. Only thing I changed was going from 5 days to 4 days and 7.57 hours a day down to 7 and that was so I could have a day off every week to have doctors appointments and blood tests/treatments. I have also informed my immediate boss and the centre manager so they are aware of it should any issues arise while I am at work.

A lot of people feel tired and fatigued with ITP. It could also be a side effect of one if the drugs u have been on.

Travelling is fine I would think, u might want to have something written up from your doctor though in case of emergency and u end up in hospital on your travels and u could also get a medical alert braclet to show u have low platelets. There has been some discussion in here on if high attitudes cause platelets to drop. Maybe try the parents of kids with ITP thread, I think I read it in there or maybe ask your doctor at what counts he would consider safe to travel with.

Welcome to the boards!
I think for the most part we need to listen to what our bodies are telling us! Obviously you should listen to your doc and avoid the extreme, like I wouldn't play football or do anything that requires a huge stress on your physical body but for the most part we all lead normal lives. I'm not sure about the chills, maybe your coming down with a cold or something. I would mention it to the doc though.

Rituxan caused fever and chills for me in the evenings once or twice. It could be that, or maybe you have a virus or something. By the way, Rituxan can take up to 12 weeks to begin to work, so don't get discouraged if you don't see results by next week.

If you have bleeding in the brain, the usual symptoms are like those of a stroke...well, it is a stroke. Thunder clap headache, loss of speech, vision, inability to use limbs, dizziness, etc. Most people know if it's happening.

I kept working too, and just did my normal activities. I worked with counts under 5, however, I did respond to steroids so each time my counts were not low for very long. Since you have your doctors approval, just do what you feel up to doing. If you are up to working a normal pace, you can do that. It should be safe for you to travel after Rituxan treatments. I can't think of any reasons why you couldn't, unless your counts prohibit that.

hi, i hope the rituximab kicks in. and like they said it can take a while. Officially the drug can take up to 140 days to take effect. Thats what a HK University stdy i recently read professed.

Since youre in India, may i know what brand of Ritux did you use? MabThera or Reditux? I ask because i hear there is a cheaper rituximab alternative from India that i am considering.

More platelets and Happy New Year

If I have fatigue at counts greater than 30K, it's usually an indicaction that I need a thyroid medication adjustment. At less than 30K, it's likely to be the low platelets. Many of us have both Hashimoto's thyroiditis and ITP. I mention it because common symptoms of hypothyroidism are fatigue and feeling cold. For some, improving the thyroid condition can improve the platelets. Unfortunately, I wasn't one of them. The following link has a good checklist of Hypothyroid risks/symptoms thyroid.about.com/cs/basics_starthere/a/hypochecklist.htm

I am also an IT professional and other than taking a few hours late in the day for Winrho infusions every 6-12 weeks and the odd hemo appointment, I haven't changed my routine. I'm fortunate that his office is set up so I can run in for lab work on my lunch hour. I have flown with counts under 30. If you do I'd recommend getting a rolling laptop bag. My biggest issue with travel is the bruises I can get from luggage straps or occasionally a seat belt that's too snug against the arm rest.

Athos i am using mabthera as of now and yes there is a cheaper version i.e Reditux which is exactly half the cost. Since this was my first experience with rituxo we decided to go wit mabthera. But when i checkd up with my doc he said that it pretty much the same but the only thing is that all the clinical studies have been done with mabthera so not much info on reditux but frm his experience he said that he has treated ppl with reditux as well and they have responded

thanks for the response. I will try and get some shipped to the Philippines in the near future since we are not on any Medical Plan.

My novice advise to you would be to get more sleep and stress less. Its not only good for the platelets, but for your whole well being too. All the best.

Peter