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ITP TREATMENTS - Which ITP treatment has given you the best outcome in terms of the longest period of remission ?

AnthonyHeard profile imageAnthonyHeardAdministrator120 Voters

Please select all that apply:

34 Replies

Almost 5 years remission after this

Rituxamab was my last....So not sure between that and splenectomy count has been 250ish for over 2 years...

Have not had any actual remission from ITP since diagnosis over 7 years ago, but eltrombopag has helped me maintain a count of between 40 to 50.

Justicekelly profile image
Justicekelly in reply to

Same boat here, my is 42-45,000. Never had remission.

I had 8 years' remission after splenectomy, then the roller coaster began again. 6 years later, I'm pretty safe on Nplate, except when I have a virus or infection. Then I'm in the hospital with transfusions, decadron and Nplate. I could not tolerate Igg or prednisone. Rituxan did zero. Looking forward to seeing the results of the poll!

Now in second year of remission.

I had 3 years remission after splenectomy. Then 6 months for each IVIG treatment. 10 years remission from reducing stress and changing diet.

How did you change your diet? Very interested

Not been in remission since being diagosed last year, been on various treatments but eltromopog and mycothomolate has held my platlets at a steady 150 this last 5 months.

Been on Eltrombopag for almost 3 years, its keeping my platelets at a safe level with no side affects.

Been on eltrobopag for ten months which have kept my counts around 100. Tried to reduce the dosage but the counts went down sharply.

my daughter sits at around a count of 30. She snowboards, has played netball to a very high standard and flies the flag for ITP. However - its tough and becomes an expectation. She is an inspiration and her glass is always half full. She has been diagnosised IPT since 2007. When she was younger as parents we always made sure her condition was shared with those who needed to know but as she has grown older she has now taken charge. Her count in general is about 30 - she plays galic football, is completing a degree in primary teaching in Scotland. She lives life to the full but also lives life on a knife edge - never knowing when the condition is going to cause her problems. She is an inspiration. She sufferes from huge exhaustion and has to excuse herself from student life but bounces back when she can.

hw is she now?

Best results with dexamethasone over any other treatments.

Now in remission and using herbal remedies.

Platelets regularly 180 or better

11 months since splenectomy sitting at 170 last 6 months no other meds except antibiotics .

Rituximab gave me just shy of 3 years with levels around the 100-120 mark.

Now believing stress has a large part to play however, so I may have got longer if life had been normal!

Nplate has given me my life back. Apart from the fact i have to go into hospital every week. Where i inject myself. I have been in touch with my mp. Because i know that in london people can inject themselves at home. but my hospital is in swansea wales. and they have told me that they cant afford for me to do this. Is there anyone out there who can help. Or give me any info on this please. Many thanx Crissy22a

Lynney11 profile image
Lynney11 in reply to crissy22a

I live in the north east and 2 years ago I was allowed to inject at home. I collected 4 weeks supply of injections from the hospital and stored them in the fridge. However because they have to be stored in a fridge I found it difficult to arrange holidays abroad. For this reason alone I started taking Eltrombopag tablets in February and my count immediately rose and has stayed relatively high since then. As for you not being allowed to self inject at home, I fail to see where the affordability comes into it. I had a bit of a fight with the hospital's policy, but after a few months they relented. I do hope you get your wish, perhaps you could mention my experience in your campaign. Good luck!

Anti D

was good to

Me!!!!!

Had my first course of rituximab 6 years ago & was in remission for 4 and a half.

Relapsed in june / july last year, had another course of rituximab, currently in remission again. For how long, we wont know!!!!

Almost a year now, remission only achieved through Ritux because nothing I tried worked otherwise.

Not in remission as such my platelets are dropping went up to 240 with ivig ( not having this again as I had a reaction :( ) now 6 weeks later dropped to 90 and I am bruising again but hey ho onwards upwards all trial and error .

Hi all

I was diagnosed a year ago at time of writing, was put on prednisone and my count went up from less than 10 to 39 was put on mycophenalate mofetil while tailing of the prednisolone which did not agree with me much,and my count steadily dropped down to 17 over a period of 3months approx. Then I was put on nplate which after finding the dose that works for me (6 micrograms per kilogram) my count is on or about 57. Not been in remission to soon I think.

Rituxan

I have IVIG every 3 weeks but I've never been in remission since I was diagnosed about 5yrs ago my count is normally between 20 - 40. I also take prednisolone as well, they tried stopping the IVIG and just had me on prednisolone for 6 months but my count went down to between 18 - 25 so the IVIG was restarted

I had my spleen out and went from 20 to 340,000. I dont know how long it will last but I am hoping for a very long time! I hope there are some of you out there that had their spleen removed and stayed in remission? If there Are please let me know!