romoplostim balance

[salmagal]

Hi been taking romoplostim since August 2012 still responding to it but cant seem to get a stable balance im now running to hospital twice weekly once to have blood checked then back next day for results and to see what dose of romoplostim to take this is really driving me mad in this month ive went from a dose 500 count of 7 then 500 dose count of 76 dose of 350 count 137 dose 350 count of 337 dose 350 count of 63 so back up to 500 last week has anyone else had this unsteady balance thanks salmagal

[Lolly7]

What are the side effects of the Romoplostin? Is this the same as Prednisone / Prednisolone? Seems that the medication for ITP is a juggling act - it is so frustrating - I am going through the same with my 10 year old daughter on Prednisone - trying out various doses for 2 weeks at a time - running FBPC - very frustrating and an emotional rollercoaster! My prayers are with you!

[salmagal in reply to Lolly7]

Hi lolly no Romostim is an injection Prednisone is steroid I would be quite happy taking romoplostim I don't have major side effects with it apart from the fact I can't get a steady balance on it but it is keeping me at a safe count prednisone didn't work for me truly hope your wee girl responds to her treatment children apparently have higher chance of remission thanks salmagal

[NickyD]

Hi Salmagal

I know how frustrating it is to be going to hospital so often, I had a period of over 9 months where I went three times a week minimum, two blood tests and a Romipolstim injection. My counts changed all the time and there was no rhyme nor reason for it. I was unusual, the other patients on Romi had a stable count and were having bloods done every four weeks. More than once I was often taken off the Romi for a week when my count went up above 400 - some times it went up as high as 750 but it has been over 1000. We had to wait for it to come down below the 400 before continuing with the injections. It was unsatisfactory and very unsettling, I ended up attending hospital over 120 times last year. In the end I requested a second opinion and went to Barts hospital to see Drew Provan and he immediately put me on Mycophenolate and I came off Romiplostim slowly. Since then I have never looked back, my next appt with my consultant is 8 weeks from the last appt and with the Mycophenolate I have got my life back. It is not much fun - I sympathise. NickyD

[salmagal in reply to NickyD]

Hi NickyD I remember you having to keep running to. Hospital last year so glad you are much more stable i spoke to member of hemotolagy team today who was only a junior count at 127 today so have to take another 500 and back again next week which means if it goes to high have to drop down again so back on the seesaw I asked if there was any other treatment I could have but young doctor said not at the moment it makes me wonder if I should ask for second opinion thanks salmagal

[NickyD in reply to salmagal]

I talked to my consultant and said I wanted an appt to see Drew Provan. He then had to write to Barts in London to request the appt. It took about four weeks to come through. My advice is for you to manage your situation. If you are not happy then tell them what you want to have happen. I am still in contact with Drew Provan when I have a question. I email him my question, he replies and I take the email to my consultant. That is how I have managed the dosage of my Mycophenolate. I started on the highest dose and am slowly reducing it, but this regime is being directed by Drew from London because I am initiating he contact. Hang on in there.

[salmagal in reply to NickyD]

Hi Nicky D I've been looking at the I.T.P website and have seen there are are I.T.P clinics across the uk I'm going to give this a few more weeks if things don't change I will ask to be referred to Glasgw Royal Infirmary which is I.T.P clinic thanks Nicky D

[rjsmyth]

I have been on a bit of an adventure with Nplate over the last few months. My count went up to around 65 whilst taking the minimum dose weekly - then it was decided I should take it ever 10 days then fortnightly - I think this was simply to save money. My count dropped to 18 and started to have blood in my hankies and bruises appearing all over the place. Two weeks ago I was put on a dose and a half (375uG) and my count is up to 42 - now I am on double (500uG) weekly and that should correct things. My opinion is that the drug should only be taken weekly to get consistant results. I know when my count is low as I get very fatigued - when my count is reasonable I get more energised.

As this is a battle royale within with my immune system on one side and Nplate on the other I do not think absolute consistant results are possible.

Unfortunately MMF (Mycophenolate mofetil) is one of a log list of active immunosupressants that do nothing for me as my ITP is so refactory.

[salmagal in reply to rjsmyth]

Hi rjsmyh I have read on the American site about keeping the dose every week I would be happy with that but problem for me is I'm either to highor to low I can't seem to get an inbetween so can't stay on the same dose you seem to be quite steady on 500 I was 63 last week today 127 taking 500 again tonight hope you get back to usual count thanks salmagal

[salmagal]

Thanks for all replys it seems this is just a roller coaster ride I'm seeing different members of hemotolagy team every week I keep asking if I'm going to be going every week same answer once they get it right but its 9months now how long does it take sorry for winge but I'm finding this really frustrating you can't plan anything thanks for listening salmagal

[NickyD in reply to salmagal]

Hi Salmagal

I didnt have a short break or a holiday in the whole of 2012, I couldnt go away because of the constant hospital visits every week. I know what you are going through and am holding your hand through your journey.

NickyD

[salmagal in reply to NickyD]

Hi NickyD I truly appreciate your kind thoughts and support big thanks salmagal

[NickyD in reply to salmagal]

Quick aside - are you going to the ITP conference tomorrow?

[salmagal in reply to NickyD]

Hi Nicky D -no I won't be able make it checked travel routes from Scotland would have to come to birmingham then Worcester so hopefully next year will be a bit easier to get to

[NickyD in reply to salmagal]

Shame - perhaps see you next year - N

[salmagal in reply to NickyD]

Thanks if you are going please let me know how you get on thanks salmagal

[NickyD in reply to salmagal]

I am and will do

[salmagal in reply to NickyD]

Thanks salmagal

[NickyD in reply to salmagal]

The conference was really good and very interesting. A lot of it went over my head with lots of medical terminology. But I am glad I went and I look forward to the next one. Hope to see you there next year.

[salmagal in reply to NickyD]

Hi NickyD so glad you enjoyed the conference I will check it out later thanks again for keepin me up to date and hope to get there next year

[5052 in reply to NickyD]

Hi Nicky D I am from Australia and coming to the UK in May/ June can you give me email address of Drew Provan I would pay for a visit if I could get to see him. I t seems to me in Australia as this is a rare Autoammune disorder they are really in the dark. Do they have any ITP conferences in May June that you know of thanks in advance

[NickyD in reply to 5052]

HI 5052 email me on [e-mail]

[Lolly7]

!! I didn't know that you BPC could be too high? What are the side effects of that? Blood clots?? Do you think that the medications you are discussing are options for my daughter in the future if she doesn't come right. I live in South Africa and there are few doctors who specialize in ITP - ours in one of the few who do, howver any feedback frmo the international community would be great!

She was only diagnosed 3 months ago - I am vehemently against removing her spleen (which was brought up in her app yesterday as a last resort) - after having spoken to numerous people who have undergone the op and some research. I am praying she will turn around - however is currently still steroid dependent. I don't have any advice to offer- being new to ITP - but would gratefully accept any advice for my little girl!

This juggling act with the medication - all trial and error is so scary and frustrating for her.

Specialist seems to think she can operate okay at 30 with a minor chance of bleeding out (I want a NO CHANCE!) and has her on an altered dose of steroids for 2 weeks - another BPC then new dose based on results - but will not be able to do a lot of sports or activities that her peers partake in. She has blown up like a puffer fish and the medication has brought out a totally new, angry side to her personality which is so worrying - I have been advised to send her to a child psychologist & psychiatrist to get her medicated and to talk through the underlying issues and anger ref: ITP.

[NickyD in reply to Lolly7]

Hi Lolly7

Yes you can have too many platelets - they call it "sticky blood". Anything above a count of 1500. Blood clots are the result so they may need to thin the blood. But then if the platelets crash you have the risk of bleeding.

When I had my spleen removed my count was 39. They did simultaneous platelet transfusions throughout the surgery - so no risk of bleeding. Make sure you get that for your daughter. I wish I had not had my spleen removed, it did not work and now I have to take penicillin twice a day for the rest of my life.

My personality changed when I was on high doses of prednisolone as my friends, family and long suffering husband will testify. Anger can be triggered by the drugs and no amount of counsellling will help when she is angry - it is due to the ingestion of chemicals and not choice. I have been off steroids for over six months and am still affected by their side effects.

Trial and error is the name of the game I am afraid.

[5052 in reply to NickyD]

Nicky D there seems to be a change in Australia not to put people on Penicillin for a long period after the spleen has been removed I had mine out in 2004 an on penicillin for only 4 months and never again I did go into remission for 9 years

[NickyD in reply to 5052]

Hi 5052 I have been on penicillin for nearly two years now. We can only go by what we are told. NickyD

[5052 in reply to NickyD]

yes I am on the understanding that each country has their own views my haematologist said that in America they give penicillin. I did have about 4 injections before they took the spleen out trying to remember what they were for. I do have a flu shot before winter.

[NickyD in reply to 5052]

I too have a flu jab - email me - [e-mail]

[salmagal in reply to Lolly7]

Hi lolly this must be so distressing to watch your daughter going through this I agree about the spleen not to keen on having it removed as doesn't always solve the problem there are quite a few treatments but not to sure what they use for children but you could check the I.T.P website meantime please keep using this website as its just great being able to keep in touch with all members for support take care salmagal

[Lolly7]

Thanks for your mail - I am finding this group such a support - it definitely helps to hear adults who can verbalise what they are feeling and out what my girl is going through into context for me in ways she cannot explain.

I wish you all of the best!

[5052]

hi I have been on Nplate Romiplostim since August and my platelet count is up and down started 1mg per kl of body weight up too 6x it kicked in then none for 3 weeks then 4x went to 373 the next week doctor said take 5x what the hell but I did went to 691 no injection for 3 weeks dropped to 165 then 3x went to 426 so then 1x it went to 770 so no injection now for 4 weeks. Platelet count now 344 But I can not keep going up and down like this. They believe I might have become sensitive to the medication. Might have to take asprin when its high. I was on Eltromopag for 10 weeks did not do a thing for me.YES the doctors do seem to contradict each other I really do not think they know enough about this medication why would the Hemotoligist tell me to take more of Nplate when my platelet count went through the roof on one mg. I had my spleen out in 2004 and was in remission for 9 years I am from Australia