rituximab verus eltrombopag

[catt1]

hello all...ok short history..... 38 very soon to be 39 female itp for 13 years.... spleenectomy in 2004..... over the years have been treated with azathraprine, different steriods,cycosporine, (sorry about spelling but u no what i mean) immugloblin (wich i respond well to but only short term under a month) platlet transfusions and n plates (wich i dont feel i want again because the whole thing scared me)....... i have never had a internal bleed thou did after a after nasty infection in 2011 i bleed from every orifice but my ears :0....i suffer from very low drops below 10 when i have an infection and mainly in the winter coughs colds mainly....i am a smoker.... i do not drink odd one ever now and then....... since 2005 i have never had a count above 36..... i lead a normal active life thou i dont go iceskaing bungee jumping and i dont box :0) ........i have had very few serious problems.........saying that thought i would like to have a slighlty higher average platelet count i am rapidly apporaching 40 and feel that as i get older a higher average count would be a bouns....... i had been discussing options for doing this with my cousultant over the past few months .......... i had been on cycsporine for 3 and a half months at that point and my platlets were not increasing.......after a nasty infection in nov a platlet count of 3 blisters.... nosebleeds.... bruising...cronic faituge....sever brusing.... i was hospitalized and given platlet transfusion....... whilst there i did some basic resreach (because was the weekend and consultant was avalible til monday) on the internet and discovered 2 other options that mite work for me n plates and eltrombopag i hadnt fully researched it because i didnt get time but after talking to constulatant i had 5 days to do it...... but what i had read was saying goods things......i was given no information on it by the hospital....... it was very badly and quickly administered and i was discharged early..... i stopped it after 3 weeks my platlets were 106 for first injection after a 80 mlg dose of ivg immugloblin and a platlets transfusion..... 256 after second...... and 44 after the third..... then down to 22 the following week (week4) sfter injections stopped .....and down to 6 2 days later.....i have since changed hospitals and am now being seen at city hospital nottingham since where since nov i have had 4 course of ivg immugloblin and i have to say they are fantastic :0)..... have a new specialist i have seen him twice and having spoken to a lady with the same condition as mine...... have discussed rituximab with my him because that what this lady was on as a new treatment .......i think this my lows were down to the infection i had and the fact the n plates had been stopped.........but am over the infection now and hopefully n plates has now left my system thou i know your count can be left lower after n plates are stopped....... so am back to just steriods started on high does of pednisoline in november and weaned off them yesterday and am now on a 4 day 20mlg dose of dexamethasone and am due to start a 4 week course of rituximab on tuesday.......i am tempted to ask consultant that maybe we try eltrombag first to that increases platlets rather than rituximab wich destroys the b cells to obtain a higher count average count.....i havent had chance to discuss it yet as have only seen him twice and have dropped quite low again am down to 12 and he is keen to start a new teatment and my notes from lincoln are still not throu......... but have requested a phone consultation with him today before rituximab starts on tuesday to do chat about this..........i really want to know how prone does ritximab leave you to infection and how sever are any infections you get? and does anyone else think is good idea to request trying eltrobomag before rituximab? i was very keen to try the n plates and feel if it had been handled better i would have happily contuined on them what happened to me was no fault of the drug itself it was how it was given that was my issuse.....but i do feel i would rather try a treatment that incearses my platlets rather than one that destorys my b cells

sorry again about the spelling :0)

any comments wud be great

sorry its a bit of an epic read :0)

cat

[NickyD]

HI Cat - you have been through the mill with this. I have not tried eltrombopag because NICE had not approved its use when my consultant was thinking of putting me on it. Rituximab did not help my count in any way, but neither did it have any bad side effects. I am currently on Mycophenolate and that seems to have stabilised my condition. My advice is work with your new consultant who seems to be a bit better informed and work through different scenarios. I have had to go through seven different forms of treatment, working through different doses over different periods of time before finding one that seems to be right for me. Fingers crossed you will find one that works out well for you. NickyD

[sailor]

Hi Cat. You certainly have been put through the mill but it is good to read that Nottingham are providing improved consultation and treatment over your previous experience. NickyD has had plenty of experience and her advice is spot on as always. I would add though, I have lived for over 10 years with a count of 10 but luckily, I have not had regular major bleeding only bruises. However, since stopping smoking, my count has slowly risen over the last 4 years and is now at the dizzy heights of 34. I take no medication unless necessary and only have annual blood checks and consultations. I do enjoy wine, scotch and gin, but in some moderation coupled with a good diet of fresh food and rarely eat processed. I am 68 next birthday, overweight, still work and travel extensively abroad from time to time for work, although I do look at where I am going just in case. So take heart, you will find the right medication that works for you and plenty of support from others with the same problems, concerns and feelings. You are not alone by any means. Be positive and keep smiling.

[tip-3 in reply to sailor]

Hi Sailor: I am a heavy smoker and asked my hemo if this had anything to do with my low platelets; and he said "NO"; as a friend reminded me and said that is why I have an autoimmune disease. The hemo confirmed it was of unknown origin i.e. immune or possibly viral but ruled out all other diseases. I am on Promacta now and feeling weak in legs and arms somewhat and very tired. I thought it could be from working on treadmill for one hour as I am not used to same. I just read somewhere it should be noted if a person is a smoker while taking Promacta. I was on Nplate and did not like the side effects of same and the weekly blood tests, etc. and I thought it to be quite invasive injection under the skin. I just read a new treatment called "LOW-LASER LEVEL therapy; and I am going to be looking into this. I do not like these treatments and quite frankly I felt better before starting them. Hence, since this all started I have been smoking even more due to being stressed with the monthly visits; etc. I am concerned regarding same and want to try and stay healthy; but am having difficulties with this treatment; and I also have manic depression and am on other medications; but Hemo said he checked to make sure they agree with each other. I am worried; stressed and have no moral support whatsoever from anyone I associate with on the outside. One girl said it was from smoking and the other woman said to just deal with it. Feeling very isolated right now. I have read your posts and find it to be most interesting and positive feedback for people who do not have all the symptoms mentioned. And, by the way, I spoke to the pharmacist and he did confirm my question of whether or not my pap smear could have attributed to bleeding in the urine on and off; he said it could have caused it. Now I am having more doubts; but he said I had a disease and they are trying to treat same to prevent any future problems. Any advise would be greatly appreciated. I know you are going to tell me to try and cut back on smoking and/or quit; but I am having a hard time right now as I have to be ready and willing to do same.

[rjsmyth]

Looking at it logically (I am not a Haemotologist) - the splenectomy and all the treatments you so far been given are all designed to suppress your immune system. Rituximab will alter your immune system by as you say killing off B Cells - the hope is this will stop your platelets from being destroyed - works for some people and can give lasting remission - only downside is it can stay in your body for over 6 months. You have already intimated you are prone to infection so you have to ask yourself "Is this a good idea" - once you have asked yourself that question the next person to ask is your Haemo.

Nplate (Romiplostim) and Promacta / Revolade (Eltrombopag) effect is to stimulate the patient's megakaryocytes to produce platelets at a more rapid than normal rate, thus overwhelming the immune system's ability to destroy them. The advantage here is there is no suppression of the immune system - disadvantages are that it is prohibitively expensive but in the case of Nplate does have NICE approval for anyone who has already failed one alternative treatment.

My experience is similar to yours (I am 60 this year). I had all those treatments you have mentioned (not splenectomy) including Rituximab and they all did nothing!! other than to make me feel unwell. IVIG will give me an instant lift in platelets for a week then will drop back down after a further week so that is my "get out of jail" card should I need any procedure to be carried out.

I now self inject with the lowest dose of Nplate and my count hovers around 50, however like all things nothing is perfect. When I inject my dose I get flu like symptoms that tail off over a couple of days and I remain fatigued for most of the rest of the time. Currently we are experimenting with an injection once a fortnight and I will get a blood count midway through the fortnight to see how low things go and whether this helps with the side effects.

My final thoughts are to pack up my dangerous sport (motorcycling) and stop taking all the medications and see where my level settles. My Haemo is not keen on this idea!

Good luck with what you decide - we all share with you the ups and downs you are going through.

[catt1]

thank you for all your comments :0)........ have decided against rituximab......... as i am a care assistant so surrounded by other peoples infections all the time i do not think its right for me at this time and will put me at risk of other things far worse than the .i.t.p symptons are giving me........but going to discuss eltrombag with consultant as the side effects seem far less sever long term than n-plates.........have also been doing a little bit more research :0)........ and have discovered that low platelets and all the sympton i show where they are .i.t.p though maybe not even the over active thyroid i had in 2009.....they all can be a syptom of a low c vitiam count scervy and that includes the over active tyroid..now i havent never been tested for scervy but......... when i was first diagonsed with i.t.p. i was severly bulimic drinking too much and going through a pretty rough time in my life i have since sorted all these problems out and am perfectly happy :0).......... so for this week i have put myself on a very high dose of vitiam c...... (and i know you cant not over dose on vitiam c because your body only absorbes what it needs and gets rid the rest but if i do get sever diahorea i will reduce my dose)........and will see what my platelet count is on tuesday before i agree to anything.........wouldnt it be amazing and life changing if all this was just down to a vitiam c dificiency not getting my hopes up but will be very intrested to see my count tuesday.it cant hurt to try something else u just never know.

[Hidden]

The side effects from eltrombopag and Nplate are pretty similar with bone marrow problems being a possibility with both. However eltrombopag can also cause liver problems so you need to get liver function blood tests done regularly. Nplate isn't known for causing liver problems.

I've been on Nplate for three years and as with rjsmyth I'm now using it fortnightly instead of weekly as I have stabilised with a safe count on a tiny bit of the drug. I get no side effects.

[catherineb]

Our son has been treated with both rutoximab and elthrombopag and didnt have any side effects. But neither drug worked unfortunately. He only turned 6 on the 7th jan and had his spleen removed on mon 4th feb 2013. Reason for surgery wss he had a massive internal bleed from where no one is sure on xmas day, something we as parents will never forget......it was touch and go. Since we had exhausted every other avenue for treatment we couldnt take any other path as this was his second major bleed in less than 2 years. On thurs 31 st jan hisplatelet count was 3, this is what it has been for 3 years. After Iimugloubulins and steriods it had increased for the surgery to 194 on mon morning 4th feb, after surgery it has increased daily and on wed 6th feb it was 495. I can only hope and pray our little son gets a break, he has been through ghe mill since his diagnoses. His recovering well since surgery but can anyone else share how there platelet count behaved since removal of the spleen . I wish u goodluck with ur decision. Can I ssy evenwhen our son had the rutoximab he didnt puck up infection any easier. In fact he always seemed to never catch the sickness aroundd school but his brothers did!. X