NEW with ITP

HI Im male 50. In general healthy and in good condition but was feeling weak after a bad respiratory infection earlier in February. After spontaneously bleeding s and big unexplained bruises on my arms I felt this was not normal. Test results was a chock where platelet level was zero and I was urgently hospitalized where the doctors told me I had ITP! Never heard this word before and the whole life was turned upside down!

Now the treatments started:

1. 6/4-2013, Prednisolon high doses 100 mg. Quite bad side effects with heavy mood shifting, swallowing, night sweats, got hit by a really bad flue as well. After I week platelet level was however 30 and sounded good. However in the end of the week I had the spontaneous bleeding back in the mouth and nose and felt that this was not going well. Went back into hospital and platelet level was zero again!

2. 13/4-2012, Pernisolon was skipped and replaced with Deltison .

3.13/4-2012, Platelet transfusion was given just to stop the bleeding and get the system in balance they said. However platelet level was still zero after transfusion. Meaning my immune system killed all platelets instantly!

4. 15/4-2013, IVIG transfusions started immediately during three days four bottles a day but still platelet level was zero!

5.19/4-2013, Now on rituximab (Mabthera). First day after treatment a small sign where platelet level showed 7. Next day (today) it is however back on Zero!

As an alternative or complementary therapy they are now talking about Revolade! Have any one experienced something similar as I. What to do, what will happen, is there a treatment that will work for me? Any response is a great help!

25 Replies

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  • Hello

    You do have a very active imunesystem doing a bad job at the moment! Not nice for you. I am 56 had ITP since I was 10. And the same story as yurs, but over 40 years. I am now on Revolade and it works different from a lott of othjer treatment. Prednisolon and IVIG works on the imunesystem. Revolade works on the production of platlets. I had to remove spleen at the age of 13 bcause prednisolon did not help anymore. I have been on REvolade two years now. There are side effects, fatuige, headace and more, but for me it has helped to prevent drops in platlets. I still have some drops and I am now working with my doctor (a nice hematologist) trying to find a way to use smal doses of Revolade only tre days a week, to prevent fatuige on work, but when i get infections i have to use higher doses of Revolade. We have not concluded on highdoses yet as we have to look at that when i have signs of colds.

    When ITP is staibelised , its ok, it is a condition I live well with, I have my eduction and I have always been working, I only have one child, and a dropp down to around 10-20 in 9 month when pregnant, he had my antibodies whwn born and platlets of 4. After 6 weeks he was ok and no ITP after, He is now 32 and father of 3 boys!

    Try Revolade, some of the sideeffects go away afer some time! Good luck!!

    Regards from Norway!

  • Hello torgarb, thank you very much for your comment. Very much appreciated! I'm still in a kind of chock mood where everything feels surrealist and unreal. With this whole new situation with all uncertainty. Lovely to hear that it worked for you. Do you take any other meds. like cortisone in parallel or just Revolade? Cortisone is not very nice for me with all the side effects especially on the mood and with all the sours in the mouth I haven't felt a taste other then rusty nails in two month.

    Lovely to hear about your son!

    Regards from Sweden

  • Hei

    Nei, Jag bruker endast Revolade. Har sagt til min doctor at nogon kortisonpreparat inte er aktuelt mer da det er så många biverknader. Jobba med din doctor for at finna din retta medisinering. Om jag har fattat hva som blir sagt så verkar Rituximab over tid. Så resultat kan komme 4 vekor efter behandlingsslut. Håpast du har en god hematolog til at hjelpa deg. Lycka til.

    Hilsen fra Bergen

  • Hi eagle2, my daughter who is 23 is currently taking a combination of 75mg of Revolade with mycophenolate, her count at the moment is excellent for her it was 67 last week. She has been refractory to a range of treatments for ITP. In 2012 the consultants struggled to get a count above 5 for her but the combination of medications she is on at the moment has brought her count up, we are hoping it stays at a good count.

  • Hello Lindylou, thank you very much for the comment. That sounded wonderful. Mycophenolate was another new name here. As I understand that is a immune system repression? Do you know the reasons for the combination?

    Currently I feel just quite bad form the cortisone and really would need to get rid of that. But with platelet level still on zero with nose and moth bleeding its difficult to stay calm.

  • hi i crashed so many times i was diagnosed last august i am 31. i am on romoplostin inject once a week and im on top of the wotld it keeps them in 100s!!!! i understand you feeling tgthe way you do i did too i even convinced myself i must br dying of something more serious than what there finding. but once you understand a little more and find a treatment that works your come through it. like i said i tryed several treatments before finding one nd spent endless weejks in hospital. good luck your be ok keep coming on here when your feeling a little isolated when you think no one understands. we do!! take care

  • My daughter has been on and tried so many treatments for ITP that we seemed to be running out of options. Her consultant contacted Drew Proven in London and this is the combination that was decided upon, from reading various articles and from what we were told I believe Mycophenolate is the drug of choice if Prednisolone doesn't work as I believe it works in a similar way but without any of the nasty side effects. Hang in there I understand how you feel as my daughter lived with a count of 0 for quite some time, we even went through the trauma of an intercranial bleed in October, we have also had the mouth blisters but luckily not too many nosebleeds the only time we had a really serious one was when she was in the hospital in October and she had to have things put up her nose to try and clot and stop the bleed as she was bleeding really badly from her nose and eyes. ITP is a strange illness affecting everyone in slightly different ways that is why it seems that the same combination of drugs work in different ways for different people, think it is a case of try something and wait and see if it works. We are hopeful we have found something that will keep her stable but even on this combination her platelets have dropped in the last 6 weeks from 112, 85, 67, we have a count today so hopefully... I wish you all the best in finding a treatment that suits you.

  • Thank you lindylou45, today they decided to start with Revolade as I have no results what's so ever with rituximab (Mabthera).

    My doctors here didn't know of Mycophenolate in combination with Revolade. Do you think my doctor could get in contact with Drew Proven? or where to find him?

    How old is your daughter?

    I hope all the best for you and your family.

  • Thank you lindylou for the comment.

    This no 4. treatment with rituximab (Mabthera) and high dosis Dexametason (cortison) is without any trace of platelet, level is ZERO. All the side effects from from the cortison is killing me I cant stand it anymore and with platelet level ZERO its obviously not working.

    I said to the doctor today we have to find something else. As from reading about Revolade and this was something the doctor suggested as next step last week I hope this treatment could start ASAP instead. Just thinking of finishing the 32 days rituximab (Mabthera) and high dosis Dexametason (cortison) before starting something new feels absolutely impossible. Anyone know if is possible to try Revolade in parallel rituximab (Mabthera) ? Or just skip rituximab (Mabthera) and Dexametason alltogether and hope for Revolade? Im trying to stay calm but its easier said than done!

    Many thanks for the replies.

  • Hi eagle2, my daughter is 23 and was diagnosed last year. Dr Drew Proven works at Barts and Royal London Hospital. Hope you find a treatment that suits. It would be great if you keep us informed via this site. Take care.

  • Hello lindylou45, thank you for your response.

    They started the Revolade treatment yesterday, as I read from many others I had it all with nausea, headache and fatigue but manageable. The doctors also agreed to reduce the Dexametason dosis to one third, so all these side-effects felt less today, so all in all a little reduction of side-effects today. Most of all today I don't feel like an any time exploding pressure boiler which almost lost control over.

    I still don't have any test-result from Revolade that will first come tomorrow. As I understand this might take some time to see results so I try to keep calm and not only think of that. But actually today I didn't have any nose-blood for first day in weeks and that feel fantastic.

    Many thanks and the best for you, your daughter and family!

  • 6. 26/4-2013, Last information last test today still the blood platelet

    level 6 so first time above ZERO in two weeks.

    7. 26/4-2013, Transfusion with rituximab (Mabthera) continue today in

    parallel with Revolde and 20 mg Dexametason.

    My noose-blood did stop yesterday (after almost two weeks) and

    the blood blisters and bleeding in the mouth has also stopped today.

    The blood blisters and bleeding in in the mouth has also almost

    disappear today for the first time in over a month.

    Today 27/4 the blood platelet level showed 7, so a slight move in the right direction even on these low levels there might be some error margins I guess. But no mouth and nose bleeding. Quite tired but a bit calmer. One problem has been quite bad acid Reflux happening in night like 2, 3 am now every night which interrupt/stopping further sleep.

    Any one using Revolade and having this acid Reflux in night? Reading the about Revolade all acid neutralizations with minerals should be avoided! What to do?

    All the best to all of you!

  • 28/4-2013, fourth day now on Revolade 50mg and 20 mg Dexametason daily, ( rituximab (Mabthera) is continuing but as infusion once a week) .

    the blood platelet level today showed 15! Im so happy! three values in a row above ZERO without dropping. Of course knock on wood, I have been dropping out before. But this feels as a better track. Already from the start using Revolade I noticed that the mouth and noose bleeding did stop and all blisters in the mouth are gone!

    No heavy side effects, of course still quite tired and headache, the only real issue is the acid Reflux in night. Reading the about Revolade all acid neutralizations with minerals should be avoided! What to do?

  • 29/4-2013, fifth day on Revolade 50mg and 50 mg Deltison daily.

    the blood platelet level today showed 17! Im so happy! four values in a row above ZERO without dropping.

    But still quite side effects from what I think is caused by the cortison (Deltison) which I have never tolerated very good. So still very bad acid reflux in the night waking up a 3 am, and all the other rest of mood and temper etc. I discussed this issue again with the doctors today and hopefully if we have some increase tomorrow again we could skip the cortison (Deltison).

    We have tried with liquid Gaviscon outside the critial hours of Revolade (4 hours before and four hours after the pill) but Gaviscon have not had any significant help.

    See What will happen tomorrow and hopefully have a good value and then take away the cortison (Deltison).

    Anyone with a household remedy without any minerals or mlik?

    All the best

  • 30/4-2013 sixth day on Revolade 50mg. Cortison is now slowly reduced to 30 mg back to Prednisolon.

    the blood platelet level today showed 28! Im so happy! fifth values in a row above ZERO without dropping.

    I will celebrate today with my wife outside the hospital! Hope and pray that this track will be right one for me!

    All the best

  • 1/5-2013 seventh day day on Revolade 50mg. the blood platelet level today showed 50! So today I had permission to sleep at home wow!

    I really think there is something here for me with Revolade!

    Cortison is now reduced to 30 mg Prednisolon.

    Transfusion with rituximab (Mabthera) will probably continue tomorrow following that weekly treatment.

    But still quite side effects from what I think is caused by the cortison (Prednisolon) which I have never tolerated very good. So still very bad acid reflux in the night waking up a 3 am, and all the other rest of mood and temper etc. I discussed this issue again with the doctors today and hopefully if we can continue to reduce the cortison.

    The question is if the rituximab (Mabthera) actually is giving me any effect? Could only rely on Revolade? Or better to keep these there therapies in parallel? Lets see what my doctors say here today.

  • 4/5 - 2013

    Now on tenth day with Revolade my the blood platelet level today showed 90! So stable values from start! So today I could leave the hospitalisation and continue the treatment at home.

    But still very bad acid reflux in the night waking up a 3 am, and not allowed to take any acid reduction medication (Omeprazol) in combination with Revolade!!!

    Any one experiencing these acid reflux in the night using Revolade?

    I asked the doctors we need to do something here!

    Cost wise I'm trying and Gluten/Lactoses/Fat-free diet to reduce the acid production but not much help so far.

  • Guava helps some people for acid reflux. I am told apples are also good.

    TCM, traditional chinese medicine can be very good for dealing with side effects, it is helping me alot to counter the side effects of Prednisolone. Homeopathy might also be worth a try if TCM is not available where you are.

  • Hi, is revolade effective?? And how much does it costs .

  • Hi the combination of Revolade and MMF has been very effective for my daughter, she was refractory to so many of the treatments for ITp that this seemed to be our last resort. Unsure of the costs but if it works.

  • Thanks Lindylou86,as I have already used all medicines but my body didn't respond to any of it,I read all the above comments I feel revolade has given good effect,what were the platelet count of your daughter before and after revolade ?? how much they increased.??

  • Hi before eltrombopag her count was never above 10 on the combination she us on now her last count was 198. She was doing really well that we thought she had gone in to some kind of remission so her dose was reduced, the platelets started to drop when the dose was reduced so now she on 75mg eltrombopag and 1g mmf. Before this treatment We had tried numerous other medications but non if them worked she also went for an indium scan which showed that even a splenectomy would not have helped. We have a great haematologist who persevered until he got her platelets to a good level . I wish you all the best in your treatment and hope you have the same success we had with revolade . Take care

  • Thaks lindylou86,Best wishes for your daughter inshallah she will be ok soon nd thanks for your information.take care

  • Hello Zainabnek,

    yes I was going through all "old school" treatment including Mabthera infusions with no results my levels was below 10. Starting with Revolade as the 7th therapy this finally got response. My levels increased within 10 days to levels above 200 and since then I have been in remission, this is now 6 month ago. However one side effect with Revolade is clotting. I got one in my left leg and after treatment I got another one in the right leg. No after treatment these are fine but I have to wear compression socks. But Revolade really help me!

  • Hi....50 years old diagnosed with itp approximately a year ago. I was put on prednisone had no reaction was hospitalized at a count of 4, since then l have had a splenectomy no sucess. I have been on and off of prednisone presently at 60mg just dropped from 100mg. Along with this l have had platelet transfusions, ivig and revolade still my count not stabilizing. I had to drop revolade in a real hurry, l developed blood clots in my lungs, liver and legs. I have presently completed my 4 doses of rituxamab and now its a waiting game, this can take upto 8 weeks before any change in platelet count , all the while still on prednisone which comes with a multitude of side effects. I don't wish this on my worst eneny its been a nightmare what happens if the retuxamad is not successful l have no idea if anyone does please let me know, my count as of last week was 93 but l am not terribly optomistic these days my count goes up and down like a yoyo, anyways one day at a time or one week at a time when l have blood taken....good luck...my prayers are with you all..

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