I have had ITP for 5 months and no medications have helped....Prednisone, Dexamethasone (very temporary) Revolade and Rituximab. IVIG ???

[Bradyella]

Has anyone here been having IVIG infusions on a regular basis (perhaps every three weeks) rather than having a splenectomy?

[Anthonyh7]

Hello Bradyella,

The following video might be of some use for you as it looks at all of the current treatment options for ITP - youtu.be/lcC329pd-fY(Not working as expected?)

I have been living with ITP for 15 years and have been on Mycophenolate Mofetil since 2016 which has maintained my platelet count at levels between 100 and 200 give or take the odd blip.

I have had Prednisolone , Rituximab and Azathioprine in the past.I responded well to Prednisolone and Rituximab but relapsed from 2 years and 8 months remission on Rituximab in 2016 so went onto Mychophenolate Mofetil.

Mycophenolate Mofetil (MMF) is an immune suppressing drug and I have had very few side effects from it (mainly nausea & sleep pattern interrupted a bit at first).

The only thing to keep in mind with MMF it is that it can take anything unto 3 months for it to impact on the platelet count although I responded quite quickly after about a month of going on it. So it might be worth discussing it as an option with your specialist.

Having the spleen removed is definitely seen as a last resort option and is being done much less these days although it is still done in some cases. But I wouldn't go down that route until you have explored all the other options (see the video I mentioned above).

If you want to read a bit more about my ITP journey so far please do at the following link - anthonypaulh.tumblr.com

Hope this all helps

Best of luck

[sharroN42 in reply to Anthonyh7]

Anthony,The web link re ITP treatments didn’t work. Would you kind repost it?

Thank you

[Anthonyh7 in reply to sharroN42]

The following link should take you directly to the You Tube video of a presentation by Dr Drw Provan on the current ITP treatments - youtu.be/lcC329pd-fY(Not working as expected?)

[Greyone in reply to Anthonyh7]

I'm not new to ITP but i find this video on YT immensely interesting. Thank you so much for posting it. I'm gonna have to come back when i have the time to watch it in full and read about your journey.

[Dahle2424]

Hi Bradyella, - What is your Current #. All of the above never worked for me either. Splenectomy was & never will be a option. I walk around with 7K everyday with no drugs.

Gave up with the Hematology years ago. They don't know what causes it or how to treat it.

Get a 2nd opinion.

[Bradyella in reply to Dahle2424]

After having Rituximab for a four week period (once a week) and one IVIG infusion my platelets went from 4 to 140 only to drop to 71 the following week and now one week later dropped down to 29. Looks like I am on a steady decline again. I go for another blood test this Thursday the 3rd of June.

[Rafiq]

Hello Bradyella, sorry to hear that the treatment you tried have not worked. I had Rituximab in 2013 and I responded partially for a couple of weeks. On the whole, I did not like the experience and I was not given all the information needed. The procedure had to be stopped several times because on the need to pass water, the terrible itchiness and at one time, the worry that I was having heart problem. During the four weeks treatment and for rwo weeks after I felt like a zombieI have since learnt that Rituximab was developed for another disease initially. I am currently on a low dosage of Eltrombopag and for just over two years I have not made any unplanned visit to A&E because of ITP. Long may it continue. It goes without saying, we all respond differently to different treatment and I hope you find something that works you. Work with hour haematologist and very best of luck.

[Hidden]

Hi. I would not have spleen removed, can’t put it back if wrong! The only thing that I find strange is that you have been given so many treatments in five months. I was on pred alone for a year or more before starting any other treatments, each of those has been tried for many months to allow them to work. IVIG is very temporary and will not work as a long term treatment, great as a boost if you need surgery though.

[Stateofdesign]

Bradylella,

I'm 6.5 months into this rollercoaster and I too haven't been able to find anything that works for me. Like you, I'm getting IVIG around every 3 weeks to keep me out of the critical zone as they search for a treatment that does stick. I feel your frustration. I've found staying present and not letting my mind dwell on what was or stress about what might be has really helped.

[ITP_September_2014]

ask your dr about doptelet. This pill has worked for me when nothing else has.

[sharroN42]

I have had remarkable success with papaya leaf juice tablets. I have been on dexamethasone (20 mg every 2weeks) with no partial success (11 to 37 platelets). This along with 1 papaya leaf juice tablet raised my platelets to 51. Someone in this forum suggested 2 papaya leaf juice tablets. Since doing so my platelets have risen to 91. I’m really chuffed.

[Raven06 in reply to sharroN42]

That sounds very interesting. Would you mind telling me which ones you buy as there are so many different brands on the market?

[CDmom]

Hi, Bradyella,I went from April 2017 until Oct 2017 having IVIG every 7-10 days for platelets as low as 1,000. I refused Rituxin and somehow by luck (since no parasites were ever identified) I still tried parasite medicine and Rife, and homeopathics elixers and was stabalized at 60,000 within a month and now 3 years later have not needed IVIG since 2017 and my platelets are at 230,000.

Good luck and Be Well!

Cindy