Can U buy Papaya leaf Extract in the uk?

Hello

I have recently been diagnosed with ITP and am on Prednisolone to get the counts up. I have been on pred for about 6 months and hate the side effects. i have been reading about how papaya leaf extract has helped some of you and just wondered if you can buy it in the uk? i know amazon sell it but am wary about what you get as there have been recent scares about not getting the right medication off the internet. also i was not sure about what to go for, the tablet or the liquid? do you carry on having the prednisolone while you are on the extract? does it really work as well as some are saying? i really want to get off the steroid if i can but am scared it might be false hope....thank you in advance for any replies to my questions.

The person here who said she'd had success with it was in fact trying to sell it and didn't have ITP at all. So I'm not sure that anyone has really had results with it.

These things are very expensive so do be careful. And don't stop any conventional treatment without talking to your haematologist. And especially don't stop prednisolone suddenly without tapering off it as that could cause serious problems.

Where are you in the UK? There are now centres of excellence for the treatment of ITP and you might want to be seen at one of those.

Thanks for your reply Ann.

Im based in Leicester so not sure if there is anything near me. I think there are some in Cambridge is that right? Im currently being tested every week to see what my counts are and as i'v been on prednisolone was hoping that some natural remedy might help keep my platelet count high as every time the prednisolone is reduced my counts drop too and the consultant is talking spelectomy which is totally freaking me out. I know i cant come off the pred suddenly as it has side effects but like i said if there is somehting i could use as well as teh pred that would then keep the counts up while im cutting back on the pred it would be great.

Oh well, according to the list www.ukitpregistry.com/itpforum/centres.htm the University Hospital of Leicester is one of the new Centres of Excellence although they don't seem to have a dot on the map yet but are listed on the right, so you should be okay.

Splenectomy as a treatment for ITP is going out of fashion so don't be browbeaten into agreeing to having one. There are plenty of drugs to try including the new romiplostim (Nplate) which I am using myself.

I can't tell you about natural treatments as I don't think any of them work so I'll leave that bit to someone else.

Hi Ann

Sorry for delay in replying to your message. I went to have my bloods done on monday and as my platelets have dropped to 40 while on prednisolone my consultant wants to put me on CellCept. I dont know if you have tried it or been on it or heard of it? I asked about the NPlate treatment nd was told that it is given as a last resort if nothing else has worked and that as yet it has not been tested properly and that it damages the liver irreversably. Is this the same info you have been given? its just that i get the feeling my consultant is still very keen on my having the spenectomy while im trying to fight against it! Also thanks for the info about the centres of excellence i didnt realise they existed! however leicester is still a Proposed site and not yet in existence....How have you been feeling while on NPlate? are your platelet counts staying high ish? does it give you any side effects? thanks

I just answered your other thread about CellCept. I took it for over a year but had side effects of joint pains and had to stop it. Your haematologist is probably right that Nplate should be a last resort treatment. I had got to that stage myself. My haematologist at the time suggested splenectomy so I had the indium test which showed my platelets are mostly killed off in the liver and not the spleen so the idea was forgotten. I wasn't going to agree to have one anyway but was interested to see what the test would show.

Your haematologist is wrong about Nplate affecting the liver, that isn't one of the known side effects. They may be thinking of the other new drug Revolade which can affect the liver, but Nplate does not. CellCept can affect the liver anyway, but they will do liver function blood tests regularly to keep a check on it.

I don't have side effects on Nplate and it keeps my count up to a safe level.

Thanks
I think i'll give the cellcept a try and see how it goes. At this point i just have to try and find something that will keep the counts high enough. Its good to hear that the NPlate doesnt seem to have any adverse effects on you as it gives hope that if all else fails then there is still that to fall back on. Im due for the scan to see where my platelets are being destroyed. i figure theres no harm in having it done then at least if puts us in a better position in knowing whats happening rather than guessing which is how it feels at teh moment especially as there are no tests for ITP simply a process of elimination. thanks for your advice it helps put things in a better light and also its helped knowing that there are other peopleout there who are going thru the same thing but better equipt as youve been going thru it for longer...