I am wondering has anyone had to quit their job due to itp. I am currently employed in a job that I may be at risk of assault or injury.

[trinag]

I have not been back to work since I was diagnosed with Itp. I was pregnant at the time and I took unpaid leave after maternity leave. I am supposed to be back to work on monday but have been informed that I cannot come back until they carry out an in depth risk assessment. There would be a certain amount of risk in my job. Just wondering is anyone in a similar situation

[Hidden]

I am a mental health nurse and worked in a high risk environment. I only had a bank contract at the time because I just had a baby. Therefore never got sick pay. I am now pregnant again. But don't know what will happen in the future I am concerned that the risk snd all the time I need off for hospital will stop me getting a good job.

[trinag in reply to Hidden]

Thanks for that. Yeah I to am too concerned. It is lookin like in am too much of a health and safety rusk for my management to deal with

[SoporRose]

I found out about my ITP just as I was looking to re-enter the job market. The treatments have left me with what seems to be permanent fatigue, and so I'm trying to start a freelancing business, but the truth is, I have no idea what I'm doing and would rather have traditional employment.

I'm glad you started this discussion. I've been wondering how other people deal with the conflicts between ITP and jobs.

[mahin456]

Dear Trinag,

I am also a patient with ITP with a count hovering around 30k to 150k. Have undergone various treatments but, there seems to be no solution to the dreaded conditions, where-in it relapses from time to time. I am on a regular job and my energy levels are good. I continue my regular regime. I am 46 yrs age with a growing up son and a family to support. Don't let the conditions overcome you, and remain in a +ve frame of mind. I am on 50mg Revolade alternate days. I take papaya leaf extract every morning and seems to work in combinations for my self. Good luck.

[dp1204 in reply to mahin456]

How long have you been taking papaya leaf extract? Do you take it in liquid form? How long did it take to start working? How much do you take everyday?

[mobilekatz]

I have the theory in life that ITP is not going to stop me living- it makes me tired, it makes me bruised, and I know I have had to change the point at which I know I have to stop. But I have continued working in my job without taking time off.

My levels sit between 30-60., my local Dr dont treat at that point- so 6 monthly blood tests are all they offer.

But it is your choice- I work with Vets, my job has given me some great bruises, but I keep going- as to me giving up is giving in!

[sailor]

Hi Trinag. ITP is a curse, but you have some sound advice from mahin456 and mobilekatz- do not give in to it.Keep positive and carry on with your life always bearing in mind the dangers. I assume you are not bleeding regularly only bruising. I have a count of 10, have had it for 20 years or so, take no medication, feel fatigued which is part of the ITP not medication, annual blood tests at hospital and just get on with life. Still working at 68 here and abroad with my own business, but aware of the dangers and take care. If you are concerned about your employers and a risk assessment, suggest they contact the ITP Support Association who will be able to provide them with a substantial amount of data and information on the condition. Not all medics have met or know anything about ITP other than the basics. The support group have their connections with those specialists who are in the know here and in the States. Good luck

[dp1204 in reply to sailor]

Aren't you scared at 10,000 of internal bleeding? Or bleeding in the head and having a stroke? Or worse? That's what I'm scared of. And I bleed from my teeth and my nose. Do you? Or I get like a light menstrual even if I just had it. I get weekly blood check ups and I hate it. I go up and down 16,000 one week, 10,000 another week, 6,000 another week. Etc I guess the doctors have scared me so much I run and take the prednisone at the first sign of bleeding and I hate taking prednisone it's so bad for our bodies. I hate the routine I've gotten into going every week to check my blood. I can't believe you only go once a year with 10,000. You are brave. And I hate the routine of the prednisone. This has changed my life in the past few years. I've kind of stopped living and scared of everything. And always worried. Wish I could just be normal again and not worry and not care.

[scaryteacher]

Hi Trinag,

I've has ITP since I was pregnant in 1995, and retrained as a teacher from 2000 - I taught secondary for 6 years until I moved abroad, and whilst I got tired, the ITP didn't stop me working. I ensured I had a flu jab each year, and had less time off than my non ITP colleagues! I bruised from walking into desk corners, but ITP as a risk factor for not being employed didn't arise, even when I went back to my pre teaching job after mat leave.

[dp1204 in reply to scaryteacher]

I thought with itp you couldn't get flu shots? That's what I've been told. I don't know if I would want to get them anyways because I think this probably all came about from those stupid shots you get as a kid to go to school.

[scaryteacher]

I was told I needed to have flu vaccinations each year, which I do, and I've also had the one for pneumonia. I don't take any medication for my ITP, and my count is between 30-60.

There were some days when all my non ITP, non Flu jab colleagues were off with flu, and I was still standing and working, and covering their lessons. One small jab saves me from being ill, so for me it's worth having. It's better than flu dragging on for weeks, and being reinfected as schools are breeding grounds for all sorts of bugs.

[sailor]

Hi dp1204. I am sorry you feel the way you do. Firstly the steroids I would agree are terrible, but there are other medications which you could try. The problem with the medications is what works for one, does not work for others. I note you bleed from the nose and teeth. That is not pleasant and a concern for you, likewise your monthly cycle.

I do not know where you live, but if you are concerned and you have been frightened by the medics, perhaps it is time to consider a second opinion. Do you know if your consultant is a specialist in ITP or not. Not all consultants are fully aware of the various methods of treatment available and as a matter of course reach for steroids never trying anything else, or they go for the splenectomy which is even worse in my mind.

I suggest you look at he ITP website, find your nearest specialist center ( look under the Forum, there are now over 20 in the UK) and ask your GP to refer you for a second opinion.

To answer your other questions, yes, bleeding in the brain or anywhere else is of course a concern but until they find a cure, there is not that much they can do. I carry an ITP Support Association ICH card and also a medical awareness card - just in case.

I have tried many different medications and apart from the Ivig, nothing else worked, then 11-12 years back, after going in a day a week for an infusion for three years or so, I was taken off everything to see what happened. Fortunately nothing happened and so I have gone on ever since. I was however a non bleeder in the first instance. I have had one bad nose bleed since. Plenty of bruises though some quite amazing!!!!

I am not brave, just get on with life, slightly modified to account for the dangers. Life is to short to worry excessively. If you have read some of the past posts on this site, you will have found there are many who have had real problems and how they have overcome these. So do not feel isolated, you are not alone. There are about 3000 in the UK diagnosed with ITP so whilst it is rare, there is specialist knowledge and treatment available and of course plenty of sufferers on this site who contribute and can offer comfort.

I hope this is helpful, but do look at the ITP website. There is a wealth of information on there which will be helpful and I hope allay some of your fears and point you in the right direction should you consider a second opinion the right thing to do. Lets face it, it cannot hurt, but you may find a different attitude to your existing advisers. Keep us upto speed and finally, my apologies for this epistle

[owenm]

Hope things are going well on the work front,

I can only share my experience of returning to work, but being self-employed it was up to me to weigh up the risks.

I tried to manage my self employed freelance work in the live events industry with a recent diagnosis of ITP (2010).

However this year I took the decision to close down my business entirely.

The nature of the work was the problematic part, as there was no way to continue on a conventional part time basis, I regularly would have worked 18hr shifts on consecutive days for weeks on end, and that lifestyle was too demanding. I had a couple of nasty incidents at work, where I've been left very bruised or bleeding, and was constantly totally exhausted and ill with other things. Whilst on the immunosuppressants I regularly picked up small illnesses from being around so many people. I also suffered another hernia, and had to go through surgery last year to repair it.

I am now seeking alternative employment, where I am only working 'normal' office type hours, and can manage what days off I need for health management through swapping shifts.

Since I have completely stopped working, my overall health has improved but my platelet counts remain unchanged, regularly below 20. I have a haematology review every 4 weeks and my consultant treats with Anti-D when platelets are below 30. They tend to hover around 30 at 4 weeks after the treatments now that I am off the daily immunosuppressants and steroids.

Owen

[bubblesone in reply to owenm]

I would like to ask you what is Anti-D as my platelets are only 7, I would be interested to speak to my consultant about Anti-D if it takes the platelets up ,with no side effects. Look forward to your reply. Thanks

[4ladylove in reply to bubblesone]

Yah I'm curious as well because I have never heard of Anti-D treatment outter 3yrs my daughter has had this'