Does other people find different doctors completely contradict each other and confuse them?

Had itp for almost a year. Been on romiplostin for 6 months which seems to be working. When i saw doc in London he said that was best option and should not have spleen removed because it might not work and other effects. Saw new doc today who said have your spleen removed because romiplostin could have long term effects. How can i decide if doctors can't agree. So confused and stressed.

[salmagal]

Hi there I see at least 5 consultants at different times as part of hemotolagy unit and it always amazes me how different there outlook is regarding I.T.P although I must say although they have talked about removing spleen which I do not want to happen they have not pushed me to it I am at the moment taking romiplostim which I am responding to although I seem to keep crashing with it it's hard to get a steady balance with it good luck to your future understand must be hard decision

[CDmom in reply to salmagal]

Hi Salmagal,I found that most of the doctors wanted to do a Band-Aid approach treatment of Promacta and IV I G and steroids, etc. and they also offered me a splenectomy. However I did not want a Band-Aid approach I had read that hpylori could cause ITP so I tried very hard to find the H pylori inside of me. I never could find any problem though stool cultures or blood and I looked for seven months!

And I tried very hard to get down to the bottom of what caused my ITP that started in April 2017 when I returned to America from a short trip abroad and it lasted eight months until October 2017. (They wanted me to even take Rituxin. Thankfully I said no.)

Thankfully just as I was giving up and resigning myself that I had ITP for the rest of my life, in September 2017 a girlfriend suggested I get Rife ultrasonic treatment which targets the cell membrane walls of unidentified foreign organisms like parasites, viruses, fungus. Once I did that including taking a parasite pill two week cleanse my platelets that were crashing every 10 days to as low as 1000 my I TP magically never crashed again within one month in October 2017. My last IV I G treatment was in October 2017 and then I slowly weaned off steroids and Promacta.

The only thing I can figure out is that the unidentified organism was causing my body to make antibodies that attacked my platelets.

So doctors don’t really understand this additional way of treating ITP yet. Please let me know if you try this and it works. I am just trying to figure out how to help people get better from ITP if possible. I know it won’t work for everyone but it’s worth a try. So far I spoke with one other person who tried this parasite cleanse with good results.

Of course talk to your doctors first to make sure that it is safe for you.

Good luck!

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Thanks salmagal. Think i might just stay on romiplostin for time at least it is actually working at the moment.

[sailor]

Sound advice from Salmagal. Do not rush into anything you are unsure about. You could always ask for the test to see if the spleen is the problem before you make any decision.

[AnthonyHeard Administrator ITP Support Association]

Hello efd106, I can fully understand how you feel. Unfortunately ITP is a condition where there are so many opinions and views. I have seen numerous specialists since I was diagnosed in 2006 and as you say every one of them takes a slightly different approach to treating ITP. Some avoid issuing any treatment unless absolutely necessary and one specialist I had seemed to be stuck on just steroids, almost in fear that using anything else was a step beyond him. I can understand such caution as obviously all the treatment options have some side effects, some worse than others. BUT my last 2 specialists have been great and they have basically given remission me since August 2010 following Rituximab treatment. Looking back in my case, I feel that I wasted 4 years on steroids as after the second try on them I should have pushed to be tried on something else straight away. BUT hindight is a wonderful thing !

For what it is worth and from what I have learned since being diagnosed in July 2006 at age 46, the emphasis seems to be moving away from splenectomy in general terms, albeit removing the spleen may still be the fall back position if all else fails. This is underlined in the following link to the International Consensus Report on the dignosis and treatment of ITP. But we have to keep in mind that opinions, knowledge and approaches to treatment are changing all the time. The Rominplostim route is one that would seem to be sensible for you to follow until at least you have confirmed whether it works for you longer term.

With ITP there is as you have discovered no absolute right or wrong answer, it is just a matter of finding the treatment that is right for each of us, as individuals . Some people find the appropriate treatment for them, quicker than others but the good thing is that the choice of treatments is growing all the time and certainly the options, even since I was dignosed are a great deal better than they were. So we have reasons to be optimistic.

Best wishes and good luck. Hope that Romiplostim continues to work for you and that Rituximab keeps working for me.

Link .....itpsupport.org.uk/consensus...

[NickyD]

Hi efd106. Dont be surprised by different drs having different opinions. There is no sure fire cure to ITP so everyone will have a different view on things. I have been on Romiplostim but it made my count very erratic, so am now on a different medication. I had my spleen removed last year and it made no difference to my ITP. Dont have yours removed without having the indimium test. Dont get stressed, get used to conflicting advice, dont expect anything different. I have tried lots of different treatments and you just have to keep trying things until you find the one that suits. NickyD

[healthissue]

Hi. i have also tryed a load of treatments i am now on romoplostin and it is working. thank god. i am going to see the specialist at barts in london hoping for a long term solution or plan. as going to hospital every week is a pain in the back side.i am very happy the injection is currently working but realise i cant be on it forever

the thought of having spleen removes scares the life out of me i was told if steroids dont work then having spleen removed would not work eithe

Have just totally weened off streroids as they didnt work a tall. what was the specialist like in london.

Becky

[NickyD in reply to healthissue]

Hi Becky. Are you going to see Drew Provan? He does not like Romiplostim and he certainly will not consider splenectomy. You may be put on Mycophenolate. I have just come off Romiplostim on Drew's recommendation and the new drug is tablet form so I have stopped having to have weekly injections. He will tell you that Romi will cause your platelet count to be erratic.

[healthissue in reply to NickyD]

Sorry for late reply. yes went to see Dr provan.he was happy for me to be on romoplostin but wants he dose lowered as m y platlets are usualy around 150 to 200. So as soon as dose is lowered i can self inject. so sick of hospital apointments. how are things with you.

[NickyD in reply to healthissue]

Tell me about hospital appts! I attended hospital over 100 times in 2012 - you can really get fed up with it all. Self injection will be so much better for you. You have a good level of platelets - that should give you comfort. Keep us posted with how you get on. NIckyD

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Dr Provan likes romiplostim but as it's a heavy duty drug, only after other things have been tried. I've been using it for three and a half years with him and he's happy to keep me on it as necessary.

[Hidden]

Dr Provan from Barts and the London is here to give you some idea of what he's like.. fhs.mcmaster.ca/medicine/he...

[healthissue in reply to Hidden]

Thank you so much for this insight. excellent information.