How do you cope with weekly appointments-N-plate

I am a new member and absolutely loving this website, I have chronic ITp for over 7 years now, tried nearly everything and I am currently on N-plate, I am just wondering any other N-plate users out there, how do you cope knowing you HAVE TO be in your local hospital every week for the injection/n-plate treatment? I am on n-plate a year and a half, the one thing I hate is I feel suffocated as where I live I can only get the injection on thursdays, between 9-3pm, so basically with blood tests and the constant waiting , it usually takes altogther 3hrs, so basically nurses said I will have to take thursdays off for ever how long on this-which is going to be longterm as I have no other options. I find this very difficult as I live in a country in serious resession, been unemployed over a yr, well qualified, and to say at an interview, ah by the way I need thursdays off, no one will put up with that. I have gone back studying teaching, but there making abig deal bout me coming in a bit later.
Also, it is so hard if I ever want to go on holidays longer than 7 days, they tell me not to go, I feel so suffocated due to this, I feel the whole world is against me sometimes, but otherwise I have a good attitude to life...I just hate the way I cannot make any plans..I am only 28 and feel like I could never leave Ireland, does anyone experience the same? or have you any other routine I could follow, even small things like family holidays, I can't go cos there longer than 7 days, it is so hard sometimes, when you keep picking yourself up, any advice? Thanks so much:)

Is it not possible to self inject in Ireland? It seems odd not to be able to as we do in the UK. I now only go for a blood test and to collect drugs every 8 weeks. You should ask because it makes it so much easier. Failing that, is the other similar drug eltrombopag otherwise known as Revolade in Europe, available to you? As it's a tablet it's easier to live with.

It's possible that Revolade may not work for you as well as Nplate (as was MY case - I had to switch back to Nplate) but I have heard of patients' successfully switching.

Also, I am on a 2 week schedule of Nplate (this is unconventional) that works for me personally. Maybe you could discuss that with your physician?

Good luck!

Thanks so much for your replies...I will check it out, it just seems such a big deal when I mention anything about self injecting/anything to make it easier, it can be so frustrating, have had enough, I just hope soon they will listen and try help make it easier for me, waited 4 hours yesterday for my injection Fingers crossed I will get more flexibility soon, thanks so much again, loving this website, made my year

It is a great website! I have no advice re the injection frequency but hope you can work something out that allows a bit more freedom. Others here have more flexible arrangements.

Niamh my 18 yr old has ITP. We live in Dublin, 'would like to hear a little more of your experience here in Ireland. What treatments have you tried before N Plate?
Niamh finished 4 weeks of Rituximab 3 weeks ago- platelets currently at 15-still hopeful but starting to think of the next step if it doesn't work.

Hi Mary...I was trying to connect, I am only new to this, so bear with me, I would like to chat anytime, I understand how hard things are and to be honest reading this we definetly don't be informed very well how to deal or cope with ITP as well in Ireland. I have ITP over 7 years, I was on steroids for a yr in 2006, had my spleen out in St. Vincents hospital, Dublin, cos was living in Dublin at the time, that was unsuccessful, have had IVIG many times but have allergic reactions to it, so try avoid, got rituxmab 3 times, the second time I had a yr with normal platelets, went to australia, after a yr, I had to return hom cos I relapsed, got ritux again and unfortunately didnt work well 3 rd tiem, so since sept 2010 I am N-plate/injection, it is an injection u get once a wk...as u see above is bit of a pain regarding flexibility. Can arrange a chat sometime cos understand in Ireland it is v rare, I do feel like the only person in the west with chronic ITP...hope your daughter is coping well, I can imagine she has her ups and downs. Feel free to ask questions

Sonya you have been through a lot. Good that N plate is working for you. Are you going to ask next Thursday about self injecting? Even from the hospital point of view what a waste of your time and theirs. If they won't let you self inject could your arrange for you GP to do it? You get so weary of it all you'd think the Haematologist would accommodate you so you can get on with your life.
Niamh attends St James's Hospital Tuesdays...there for 8.30, bloods done at 9ish , wait for an hour for results, then anything up to another hour or two to see the Haematologist or one of the trainees! Total 4 hours not including getting there. She had IVIG there on Thursdays but never got through the full infusion as she had bad reactions, she had 5 infusions over 6 months but they have given up on that now as the side effects were bad and the results were negligible in the end. She has been doing this for a year now.
She is in Leaving Cert year and she has missed so much school. It is driving her crazy so I can imagine how fed up you must be. We don't know of anyone with ITP here either though the Consultant Haemo has talked about someone she sees who had a successful splenectomy. Always pushing for the splenectomy...trying to wear Niamh down.

'Will email you.

To be honest, I have been wondering the same thing. Right now I'm on disability for another disorder, but I am getting to the point where I would like to start looking for work again. I don't think they will like the answer I usually give to everyone when they ask if I can do something on Tuesday. Oh, sorry, Tuesday is N-plate day.

Unfortunately I have asked bout self injecting from the start...it so frustrating, they keep putting me off, but say it wont be possible, after Ann above (thanks Ann) saying she lives in England and she can self inject I am going to tell him this, going to make an appointment and bring all this to the table. I am kinda angry, after 7 years with this, I have never been offered support, I told them on many occassions I was finding it difficult to cope with the never ending unsuccess of anything, I want let them know to tel other ITP patients about this, it is great to see others like u, I felt v singled out. I sound v angry now, just I suppose disappointed with the support. Was thinking I am going to do more research before meeting them again, and I am going to say I will contact local TD's/write letter to Minister of health/president, whatever it takes, explain how much difference make to my life to self inject, even if it a yr or two down the line, so lets hope someday they will allow it and if your daughter is on it, things will have improved. The poor girl, I can imagine during her Leaving cert, it is v hard for it to not bring u down, the pressure of the leaving cert as well, plus, I am sure she justs wants more normality. But it is important I have learned to continue life as you did before ITP and do not let it influence any decisions/your happiness, it gets easier, how long does she have ITP? So i am assuming she didn't get her spleen out? I had key hole surgery, it was great cos, there is barely any scaring, just the incision below your knicker line (dont know else to describe, lol)...any questions, feel free to email me:)

Another thought.. if you are having a blood test every week, if you are stable as you must be by now then that is not necessary. You could just go for the injection and if they got their act together you could get it at 9 o'clock every week and just be there a few minutes. I only have a blood test every 8 weeks and just do the injection at the same dose each week. They really ought to be able to accommodate you that way without breaking any rules and to make life easier for you.

When talking to an American doctor at one of the UK ITP conferences, he said that when American patients on Nplate want to go away they just miss their dose that week. He showed a graph of a patient on the drug and every now and then it would dip down very low and he said that was when she went away. So it seems that if they want to go away, they just go.

Thanks a million for that Ann, I just think I need to start being more assertive with my doctors, starting over the next few weeks, it is great to hear your story. I hope the n-plate is working well for you...do u ever have any side effects? I am noticing lately I find it v hard to sleep for about 3 nights out of the 7 and sometimes headaches, but I can tolerate it. I see there is a conference on in May, unfortunately I cant go to it, I have arrangements already made for that wkend..have u gone to many? do u find them useful?

Reading what you said on another thread.. has your doctor considered that you have cyclic thrombocytopenia? We've seen a couple of people talk about it.

www.ncbi.nlm.nih.gov/pubmed/15572217

Thanks Ann, that is v interesting, hmmm I will have to check this out and mention to my doctor, he is going to be a bit gobsmacked the next time he sees me, coming out with all this new info...it is definitely no harm to look into. Are you going to the conference in york?unfortunately i cant go, do u no when the next conference will be held in the UK? Thanks

Hi Sonya, I don't think I'll be going to York. I live in London so it's a bit of a trek and costly. I've been to them three times now. I found the first one I went to in London was excellent. The day before the patients' conference was a doctors' conference which I also went to and found that the lectures were exactly the same at both and I was new to ITP so learnt a lot. I had expected the patients' day to be somewhat watered down but it wasn't.

Last time I got to talk to a guy from the drug company GSK about Revolade (Promacta) and how they were trying to get it accepted by NICE in the UK, which was interesting. Oh and there was a talk about autoimmune diseases and fatigue which was particularly interesting. The abstract of the study done on ITP and fatigue is on the web but the speaker who was the author sent me the full paper so that was useful.

They hold the conference every year and if it's down south next time I shall probably go although speaking about it has made me want to go this time so I may look into the train times again.

im on Nplate in America (and have been trying to get self injections but not possible) So I have to deal with the hassel of getting wekly blood draws and injections. Life feels impossible sometimes (I also have a 2year old I have to drag to all these appointments- its no fun for either of us)....
Some how I guess we have to just make it work?

HI Brittany...yes ur rite..we jst have to get on with it until something better is organised...I think it was really getting to me before, but its like ITP...u jst ave to accept it, so think I'm gettin over it now, my doc agreed 2 weeks ago that I can now get my injection and bloods taken the same time, I jst have to call about 2hrs beforehand to let them know to order the n-plate, so last wk it was great, hadn't much waiting time... I have no children, but I can imagine some days it jst seems like a big chore, I think the winter months are worse cos its always raining, well it is in Ireland, lol but things looking up now, days are brighter... we will live in hope that some day we will be self-injecting...have u ITP long?