ITP since May this year. Currently on Revolade

I was diagnosed (in Sweden) after the usual doctors visit, I had bruising, mouth blood blisters, the red dots all over my body, and a 16 hour nose bleed that really told me something wasn't quite right!

I was rushed into hospital with a count of 3, they tested it about 4 times in 24 hours.

After 4 days on steroids (100mg) my count was between 7 and 9 I lost the red dots and mouth blisters and went home.

However my count did not improve so they started to reduce the steroids and tried an IVIG, this worked great for a few weeks my count peaked at 122 and gradually dropped off. During this time I had a bone marrow biopsy, which was all clear. I have tried Rituximab once a week for 4 weeks but it did not work. I had to have a second IVIG to get my count up as it dropped down under 7.

My doctors started pushing for a splenectomy but I told them I wasn't interested at this stage, however I would like to try Revolade. They agreed to this and I am now on day 5. My count this morning was 30 which is more than double last weeks count. I am also changing my diet after reading a lot about that, hopefully that may help to fix the immune system in the long term.

/Jason

13 Replies

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  • I was in a similar position to you with all treatments bar IVIG having no effect. Nplate gets my count around 50 for the last two years. Interestingly Revolade (Eltrombopag) did not work for me.

  • Hi ,we sound like mirrors. You have the same history as myself.After all the drugs, I thought i would try and help with a gluten free diet. I did it for six months .And only eat the good things , and nothing changed at all. The only thing that is keeping my platelets up is my weekly injection of romboplostim . Amazing . I would be interested in what diet you are going to go on . Have you heard of something different to gluten. I wish you all the very best.

    Crissy

  • Firstly I looked at this:

    drbenkim.com/autoimmune-ill...

    Then I have seen some documentaries and a university lecture about cancer and modern health problems, all these things pretty much point to eating more fresh vegetables, not eating processed food. Its hard to find the right things to eat but I am trying to gradually move over to healthier alternatives.

    Also, more vitamin K, so spinach, kale as they have an extremely high vitamin K content. It can't hurt to eat healthier can it, also will reduce the risk of other diseases in the future, one is enough right now!

    Jason

  • I have been on Revolade for 2 and half years, my count goes up and down so much. The highest I had was 1069 two weeks ago , then it drops to 119 last Fri. I have been trying to figure out what it is that makes it go high. I have been on a lot of other meds but doesn`t help, this so far has been helping.

  • Wow that's some serious ups and downs, any side effects? Have you still got your spleen?

    Jason

  • I had my spleen out in 2009. When my count goes down to 10 or below, then I have to take Dexamethasone for 2 days. One time I was told to take it for 4 days, it was awful, it made my head feel terrible, and the blood pressure went up, so I only take it for 2 days , 3 at a time, then I`m okay. Only thing is , that pill doesn`t let you sleep. That`s the side effect for me. Cheers for now.

  • Hopefully your count continues to rise.

    What changes are you making to your diet.

  • Hi I wrote a reply to crissy22a with some info on diet above here.

    Pretty much everything you read when you look into diet seems to be about getting rid of processed food, that's difficult, almost everything in a modern supermarket is processed. I saw a lecture on cancer a while ago which basically said if you eat something you should eat all of it, for example don't remove the skin from potatoes, eat full corn pasta, wheat, rice etc. We don't have cancer but apparently you can effect your immune system with food. It's a long process and I guess at the least 6 months to show any result.

    Jason

  • My Haematologist seemed to think that other than feeling healthier a change of diet or habit would not bring about a significant rise in platelets. Even giving up alcohol for six months did nothing to my count. Getting exceptionally tired does have a negative efffect. In the last two and a half years I have been on Nplate my count has rarely risen above 65 and only once dropped to 18. Mostly it hovers around the magic 50. I was hoping for a sudden spectacular rise and remission but that has never come. I am on the maximum dose so there is no where for me to go other than IVIG if my count plunges suddenly. I do get a gamut of side effects but none that are particularly debilitating other than extreme tiredness. The day of the injection I will feel slightly hyper, irritable and moody. The following day I will be spectacularly tired in the morning slowly improving throughout the day. Day three will be an improvement in my mood but I sometimes get what I can only describe as a sort of vibration in my body. These side effects slowly taper off ready for my next weekly injection.

    I would really rather not be taking the Nplate but realise I have no options.

  • My Haemotologist doesn't think much of a diet change either, I told him I wasn't overly impressed with steroids so far myself, eating better has less side effects ;)

    Right now Revolade has improved my count which is now up to 147 after 2 weeks. Have you tried Revolade, so far it's the only medicine that works for me apart from IVIG, but that's a short term solution and I never went as high as 147. I think Nplate is the last option they use here.

  • I was diagnosed with ITP as a young adult and so being under 18 and too young for romiplostim I was offered to go on a children's trial for revolade/eltrombopag - it actually did work wonders really but I did find it frustrating have to watch my diet and times for taking the medication because I'm sure there was something about avoiding dairy which was difficult when you love full fat milk and cheese! and whenever I caught a cold my platelet count soared! - part of the trial was going for regular eye test due to the sides effects and unfortunately I actually did develop really early stages of cataracts and so taken off the drug which for 17 was a bit unfortunate - just a side effect I thought I would share but I'm sure you're already aware of - after that I was moved straight over to romiplostim as soon as I turned 18 which has worked well over the last few years and I haven't had any further issues with my eyes - just need good old glasses now 👍🏻

  • Hi Ann, yeah you can't have dairy 4 hours before or after taking Revolade. I take mine 12 at night, so no cup of tea after 8 for me :(

    How was your platelet count on Revolade? Mine soared the first week, now it is dropping off and I hope it stops before it goes to low! Currently at 71.

    I know about the cataracts but my doctor has not said anything about eye tests yet. I will talk to him about that because it's pretty worrying!

  • Hi Jason

    My count on revolade was absolutely fine it did work well actually - i think I did have to up the doses every now and then - it was a few years back now but I'm sure it got up to over 400 when I caught a cold! But they were a good safe level most of the time - yeah that was one thing I really didn't like - I'd still try and sneak a glass of milk or tea in though!

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