treatment

Hi this is my first post , i am 33 years old from scotland married with 3 kids very healthy man or so i thought until i was diagnosed with itp 8 weeks ago with a count of 1 since then i have had steroid prednisilone 80mg count up to 27 for one week then back down to 2,ivig count up to 14 then back to 2,intrevenious prednisilone count up to 35 then back to 4 ,promatica 50mg 1st week count of 4 second week 50 mg count of 45 3rd week 75mg promatica count of 57 4th week 75mg promatica count 5 is this normal with promatica ??? i know there is nothing normal about itp ,and like everyone i am worried and also i have been signed off work by my doctor so i cant go to work and i am not getting paid which is frustrating ,im starting romiplostin on tuesday 29th march .i thank you for any insight

Sorry this has been so difficult for you. Once a treatment starts working, you can consider yourself healthy again. I control my ITP with prednisone and haven't had any experience yet with Promacta, but others in the discussion groups can tell you their experiences. Have you checked the PDSA section on treatments yet? Some folks have had good luck with WinRho and Rituxan.

I'm wondering about the doctor preventing you from working. I don't know how things work in Scotland, but I think that would be very uncommon here in the states. What is his rationale?

Id imagine the not working could be cause the counts are under 10, my doc was tryin to get me to not go to uni with having low counts n all I was going to be doing was sitting in a lecture theatre for 2 hours each day.

Am not sure, cause im in England dont think my doc had much experience of ITP as she panicked a bit.

Are you in a manual job?

I also worked with low counts. I have a desk job but it's fast paced and stressful. What do you do?

You can still consider yourself healthy, you just have lower than normal platelets. I hope something works for you soon!

Hi this is my 1st posting. I been battling ITP for 6 yrs. It is very stressful the treatments our. With time the doctor found the wright mixture of medication to help elevate my count to 100,000 then i had my spleen removed and my counts return to normal. This past mouth I came down with a sever lung infection that sent my counts to 4. It took about 4 weeks to get my count back to normaual with the medication but I'm fine now and off medication. What I'm tring to say is be paient and things will work out.

thanks for all responses , they way things work in scotland when you are sick/find something unusual like bruising you go to the doctors and he refers you to a specialist who takes over you case although your gp still gives you what we call here a sick note/fit note telling your employer you are fit or unfit for work , initially getting itp and not knowing what it was or anything about it you take you gps advice and stay off, but now i feel capable of at least doing admin/office work even with low counts however my work is sort of 50/50 with warehouse duties and office work but i think my work may be willing to restict my duties but insurance problems arise for your employer from going against you doctos advice and this could be a problem , i do think doctors here prefer to be over cautious when they dont have many patients with a particular problem.Also my wife is more worried than me about me going back to work and she definitley wears the trouses in our house but i'd never tell her that !

Hi jpb
I'm currently taking Promacta, but only for 20 days now. I started it shortly after finishing IVIg, my counts were still in a safe range when I started it and have only gone up since! In fact, I was at 174 on Monday. Haven't seen that number in quite some time! I'm not scheduled for a CBC until the first Monday in April. So we'll see how it goes then. I'm feeling ok for the most part. We all have our days though right?! You'll be starting Rituxan next week? Not sure what you know about it already, but here's what I've experienced. I've had 2 treatments of it. The first one worked for 7+ months, the 2nd one had no effect at all. I had a slight reaction with each of the 1st treatments, no biggie though, and no other side effects at all. Each treatment will take 6+ hours and with the pre-treatmens (tylenol and benedryl) plan on sleeping most of it! It could take up to 12 weeks to see any change at all. Let us know how it goes for you.

I've been on romiplostim for just over 18 months. It can take some time to find the right dose but when I thought I had, I suddenly got super high counts and have had to reduce the dose down to the lowest possible again. So it seems that some people build up to it and become more sensitive as time goes on. No side effects for me either.

The manufacturer has just changed the guidelines for it over here in the UK too. If your count goes up to 250 you have to stop taking it and wait till the count drops. It used to be 400. Over 150 twice in a row too and you reduce the dose. So you won't be aiming for super high counts.

Good luck with it.

Gretchen, jpb is going to start romisplostim, not rituxan next week.

Jpb, was the doctor who started you on the Promacta and who prescribed the Romisplostim the specialist or a general practitioner? I would think that a specialist, one familiar with ITP, wouldn't prevent you from working unless you were having symptoms like bleeding and bruising or if your warehouse work might involve some danger to you--like things falling on you or you falling. But your explanation of how the Scottish system works is interesting and certainly could make even a non-alarmist doctor nervous.

Hi! You know, my experience with specialists was that they reacted with alarm because nobody had experience with it. One has since calmed down and is working with me very well. I teach at an alternative school full of at-risk teenagers which can get very active. I am at 12K currently or lower and am doing fine. I watch what I do but have plenty of energy and am not bruising. Maybe your gp can be persuaded to let you go in at least part time. My count has been below 20 for almost a month. I had 4 weeks of rituxan that finished more than a month ago. I'm thinking that my hemo. is going to want to consider a different treatment. He has changed to not being concerned until I get below 10... but I still plan on working.

Good luck! It can be a long road. Don't forget to take advantage of this site. It helps so much.

karenr wrote: Gretchen, jpb is going to start romisplostim, not rituxan next week.

ooppss, my bad! I guess I just read the R and went with Rituxan! I've never called NPlate by any other name.

thanks to everyone this site is great for advice when your trying to understand itp especially like me when you have been recently diagnosed, my counts are usually below 5 when my treatment fails usually within a week of starting it and i dont know how low is to low to work safely ,i think gp and hemo are being cautious because its still pretty early days for me just now .what counts do you guys work at? or is it a case of if you are not bleeding ,bruising or feeling bad you carry on? i think romiplostin is called nplate in america. thanks

JP:

I worked with counts below 10 for over a month..the lowest at that time was 3. I actually wished my hemo would tell me to stay home, but he didn't. I was feeling bad (tired and dizzy), but he made me feel that there was no legitimate reason not to work, so I did. All doctors are different.

If you don't have a strenuous job, it probably is as safe to work as it is to stay home. The most dangerous part would be the travel to and from.

Counts are funny things...and everyone is different as to how they react to low counts.
For me, other than being hospitalized one time, I've never stayed off work due to low counts.
Sure, I've missed work because of the treatment sometimes (back when I was taking Prednisone or Dex) or because I got a virus while being on immune suppressants....but not solely because of a low count.
Several times over the past 8 years, I've done my day job (engineer), then played/sang with my band five hours that night with a count of 4k and while in the middle of a Dex pulse. Being angry and wired on Dex while playing in a biker bar is not something I'd recommend, but the show must go on and all that......
My wife is more cautious for me than I am for myself I suppose.

Good luck with the Nplate! I've been on Promacta (similar) for over a year now. Keeps me around 50k.
The good news is that I have not missed any work at all in the past year due to illness. No more suppressed immune system!
.