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ITP Support Association
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Decision Time

Hi all,

I was diagnosed with thrombocytopenia in 2007 and over the years , my low platelets were managed with IVIG, prednisolone and Rituximab. However, now in my mid 60's the yo-yoing platelets is becoming more often and 3 different haematologists have urged me to go on a more "long term", treatment as the risk of an intra-cranial haemorrhage has increased. The options are ether, Eltrombopag {Revolade Tablets} or Nplate {Romiplostim}. If you are or have tried either of these, I would be grateful if you would let me know what your experience is/was like. In particular I would like to know what the side-effects are/were.

Thank you.

Rafiq

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Hi Rafiq, - My name is Alan. I have had ITP for over 30Yrs. After Years of tests and no answers to resolve my issues I gave up Years ago and live with a count of 4K with no issues. I think this is my normal. No Drugs and no Spleen removal. I am 59yrs old and live a normal life. I just when thru my 4th Kidney stone removal with a quick infusion of Pallet

infusion which got me to 40K - Waste of time. Hospital insisted.

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I was diagnosed with ITP 4 1/2 years ago age 60 and a platelet count of 2K. After 6 months of steroids etc and no improvement I was offered Eltrombopag and have now been taking 50mg / day for the last 4 years. The first 3 years my platelet count averaged around 100K. For the last year my count has averaged more like 150K and my Haemotologist is considering lowering the dose I am on.

I am fortunate as I live a completely normal active life with ITP and have no side effects from the Eltrombopag.

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Hi , I have been on n,plate for 4 years . It works for me with no side effects at all. The only down side of It is I have to go to the hospital every Wednesday for my injection. I inject myself because I am hoping that one day they will let me do it at home. In London patients are allowed (because they have a bigger budget ) I'm in Wales, and they have told me they cant afford it. So ,good luck and I hope it works for you too.

Chris

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Hi, I had had ITP for almost 10 years. I had no treatment for the first 4 years as my count was stable at 60-80, however in 2013 I had to start treatment when my count dropped to 29. After 6 months of using various drugs which did’t work, I eventually tried weekly NPlate injections. After a few months I was allowed to inject my self at home and my was stable at around 40-50. However, 2 years ago I went on to Eltrombopag tablets, 25 mg daily and my count soared to over 100. The only reason I started on the tablets was because it was more convenient. The NPlate needed to be kept in a fridge which made travelling very complicated. I had very few side effects from NPlate, maybe only more headaches than usual. With the Eltrombopag all I have is a bit of acid reflux and dry eyes. The latter is problematic as I wear contact lenses but a few days’ break from lens wearing sorts it out. I am a quite healthy 65 year old woman and to be quite honest, apart from having to take a tablet every day, more bruising than a normal person and occasional bleeding gums, I wouldn’t know I had the condition. I hope you can find something that works for you and that you can live a normal life as I do. Good luck.

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Apple13

Are you taking papaya tabs or pomegranate tabs? I was diagnosed 1 month ago.

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Sorry for not replying sooner. I take no dietary supplements apart from one multivitamin tablet daily. My haematologist told me that diet played no part in platelet count, although many people on this forum do take supplements. I say if it seems to work for you/them then continue .

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I have been taking Eltrombopag (Promacta) for 2 1/2 years now and my platelets have seen great results. I did get mild headaches 2 to 3 times a week, and minor aches for the first 6 months or so, but those have completely gone away and I see zero side affects now. I still have to watch if I get a cold because then my platelets will drop really fast, but my doc and I have been able to adjust the dosage to prevent me from having to get IVIG - only had to have it once in the 2 1/2 years, but had to have it about every 3 weeks before starting Promacta.

I have noticed that it takes about a week for an increased dosage to make my numbers go up, but a stop or decrease can make them fall drastically.

My platelets have been pretty stable for the last 6 months between 140 and 185 or so and we are slowly dropping the number of pills I take each week trying to get my levels down to 50 to 90. It is a lot of trial and error and blood draws, but my doc is pretty confident that we can go lower than the 37.5 mg 3 days a week and 25 mg 4 days a week that I am on now - we are taking away one pill every two weeks if my levels are reasonable stable.

Of course every person reacts differently, but I thought my experience might help you.

Good luck!

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Hi. I have had ITP for 7 years. I had romiplostin for about 8 months after nothing else worked to get my count above 10. I didnt have any side effects. But i came off it to have a second child and at the moment I am treatment free.

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Hi Rafiq

I am 61 and I've had ITP for about 12 years but it has only required treatment for about 4 years. I had tried just about everything short of a splenectomy with no succes when 16 months ago I started on eltrombopag 50mg a day. The effect was dramatic - count up from 8 to 350 after 2 weeks. Shortly afterwards I discovered a bald patch hidden by my hair. We are not sure if this was caused by the eltrombopag or the MMF or azathioprine I was taking prior to it. Anyway it soon regrew completely and hasn't recurred. My dose is now down to 25mg 3 days a week and my counts are generally 100-150. I occasionally have a bit of a dip when I get a cold or other infection. For me it has been a huge success and my life is now completely normal. Good luck !

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Hi Rafiq l have been on Eltrobopag for 3 years and feel so much better. This medication has stabilized my platlet counts. Dont be afraid of trying it , it certainly worked for me. I started on 75mg a day but now on 25mg a day. Good luck.

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Hi Rafiq. I have been on Promacta (50mg) just shy of 3 years. My platelets stay between 85 and 130 with no side effects!! Good luck to you!

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In my case, both Eltrombopag and Romiplostim have been very effective.

I was only diagnosed with more or less severe thrombocytopenia in 2016.

The first two years in usually lasted only about three months each year on corticosteroids.

Since 2018, both steroids and IVIG became ineffective, at least for some time.

Romiplostim was great for a quick boost; when taken with steroids it usually rose all the way up to the 400s but gradually wore off as it does. Without steroids it shot up to about 150 and rolled off just the same. So effective, but required injections every 10 or so days...

Eltrombopag is definitely more convenient, and depending on the doses can keep me anywhere between 50 to 100+. You do have to take it daily but it is certainly the most convenient.

A few months ago, I was on Eltrombopag around 50k platelets, but I required a surgery so they mixed it up with IVIG and that gave me about 250 platelets for the two months but after slowly discontinuing the dose all the way they started to drop again...

Now I am only on steroids at the moment because we need to rule out Eltrombopag as having a side effect on me. Been taking methylprednisolone for three days so far and platelets went from ~30 to 98 in that time.

This is all interesting because both steroids and IVIG failed in 2018, yet now, in combination with Eltrombopag they did wonders. I think it really depends on how severe the current ITP is and a lot of experimenting. Generally in my case, if I don't let my platelets drop lower than ~30 Eltrombopag / Romiplostim, or possible also IVIG and steroids might still work. Once my platelets drop to single digits they are much more difficult to recover.

So bottom line is I guess is to keep taking meds as long as they work, if they don't, don't be afraid to experiment a bit with different ones; they might work even if they didn't before and don't let your platelets drop to single digits, unless you plan to keep them that way deliberately which would be valid too :)

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I'm with you on that I have had 2 surgery's with ITP and the last bill was $250,000 for 2 treatments immunoglobulin which I don't think I needed to get my count to 60K. I also do not take any meds I have had ITP for 20 years with an average 30k count and live with it just fine .Recently I started taking vitamin D (52 year old female) and noticed my platelets were going up now 90 to 110k steady for several years

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