Hi anyone here with chronic ITP that have tried all treatments including splenectomy with no success and pallets under 5000?

[Sanet456]

[trev1679]

I have tried: Prednisolone, Azathioprine, MMF, Rituximab, N-Plate, Dexamethasone, IViG and Eltrombopag. None of them have raised my count for a sustained period. I haven't had splenectomy because I had an Indium scan which showed my platelets are being destroyed in my liver so splenectomy won't help.

Have you tried all of the above? My doctor still has a couple of options available and he is talking to Dr Drew Provan about my case, it is worth getting your doctor to speak to him if you can. He is the ITP expert

[Nicola888 in reply to trev1679]

Hi trev1679, I've had ITP for about a year with counts all over the place but most recently at 4k with bleeds. Haven't tried as many diff treatments as you! Only prednisolone, IVIG (twice) and Rituximab. All of which not working. My consultant talking about splenectomy next (without an indium scan!!!) but I was interested to see you've tried Eltrombopag before splenectomy which my Haematologist said I could not have unless splenectomy did not work or I was unsuitable for surgery. Wondering how you got to have this drug and whereabouts in uk you are?

[NickyD in reply to Nicola888]

Hi Nicola888, I had to have the splenectomy before the Eltrombopag. The splenectomy did not work and I did not get the Eltrombopag either. Instead I asked for a second opinion and was went to see Dr Drew Provan in London and he put me on Mycophenolate. Since then my count has stabilised. I did not know of the indium test until I went to an ITP conference and was gutted that I had not been offered it. Perhaps you could have it done privately if the NHS in your region do not offer it.

[ITPGUY in reply to NickyD]

NickyD I too had a splenectomy with no indium test prior to the operation. I was in a very good hospital in the US and had a great hematologist. I wonder why it was not offered to me. I had read everything I could find on ITP and did not know about it.

[NickyD in reply to ITPGUY]

So upsetting when you find out afterwards about the test, but too late by then.

[Sanet456 in reply to Nicola888]

Hi perhaps just to clarify not in the UK but in South Africa.

[trev1679 in reply to Sanet456]

Hi sorry, I only just saw this. I don't know how the health service in SA operates. I would say that I would try and get your doctor to try the other treatments before Splenectomy. Even if he won't try Eltrombopag there is MMF, Azathioprine or even Cyclosporin.

[trev1679 in reply to Nicola888]

Hiya I have had ITP for 3 years and still have a count in single figures. I managed to persuade my haematologist to contact Dr Drew Provan at Barts. He then arranged for the Indium scan and then recommended Eltrombopag. I am at Medway hospital in Kent, and I am very lucky to have a haematologist that will listen and engage with his patients. The Indium scan is done at Barts hospital. It cannot tell how long a remission from splenectomy will last, but can tell if the destruction is in the liver(rendering splenectomy pointless). Some of the other treatments are worthwhile as different things work for different people. This is what makes ITP so difficult to deal with for doctors. I used the information that the ITP support association provides to engage with my doctor. It is very worthwhile joining them if you haven't already done so.

[Curly71]

The decision to fund nplate and eltrombopag pre splenectomy is a local NHS funding and policy issue. NICE guidelines say only failed splenectomy patients and those unsuitable for splenectomy should have it. But some health authorities bend these rules. I come under merseyside and i would have to go to the board to appeal for it, as they rigidly stick to NICE guidelines. Haematologist says its a long shot though. Luckily have gone into remission at the moment

[janran]

Hi Sanet

I have had chronic ITP for 2 and half years. With counts similar to yours. Luckily I do respond to prednisolone but it makes me really ill. I have been on MMF (mycophenolate mofetil) for several months and it is working for me at the moment with counts over 100,000. No major side effects just slightly upset stomach sometimes. Don't know if you have tried it? Maybe it would be an option for you?

Regards Janet

[crissy22a]

I have itp, had it 2 years now. Im on romoplastim at the moment and staying up in the 80,s. but I have just found out about the connection with leaky gut , gluten free diet and itp. I met a woman who has had no treatment in a year all to changing her diet to gluten free. And her platelets are 175. So im on it myself now, and I do feel much better. iv got my blood test result at 3 pm today .so if they.v gone up then I know its working, it can take 6 months for your gut to repair. I will let you . Look at leaky gut syndrome, this is definitely the reason why I have itp. I picked up a bug abroad and I didn't have antibiotics quick enough .

[amberyard]

I am in the same boat. I had IVIG's for 3 days on last day counts 35k, before hand 3k, 2k, 9k. On Promacta 75mg and Pred 60. I am at the end of my rope and don't know what will happen the next time they crashed.

Last time I had IVIG's topped out at 360k and one week later it was in the 40k ish.

[Lindylou86]

Hi my daughter was deemed to be refractory to all treatment she had an indium scan done in Manchester and if was found to be her liver and not her spleen so out haematologist then ruled out a splenectomy . We were all getting quite frustrated when I then found out about dr drew proven I asked our haematologist to contact him. He did and dr proven suggested a combination of eltrombopag and mycophenolate daily which has been like a miracle for my daughter who is now in triple figures and not looking back . Wd were lucky to have an understanding haematologist who listened to us and was open to suggestions . She now gets checked every three months and is doing really well apart from the tiredness , don't think that will go . Good luck in your quest to find a treatment suitable for you .

[ITPGUY]

Sorry your condition has not improved. Medical science is always finding new treatments. I hope one appears for you. Until then, do all you can to stay healthy. Weight under control, mild exercise, and eat good food. You can live with 5000, but be careful. No falling and banging you head on something. I was lucky the splenectomy helped my condition improve to 35-55.