my itp

my itp hi i am new to this site i was first dionosed with itp in april 2011.boy has it been a rollercoaster.first the prenisolone the side effects are so bad thrush all the time in my mouth all the time.weight gain and bloatingdry mouth,pains in my legs and back,cramp in my hands and feet and tremors.the next thing they tried was ciclosporin that didnt work either and then it was azathinprin no luck with that one either.so now i've had retuximab four treatments the last one on the 26th of april this year but guess what no luck yet.so back on the prednisolone again 30mg per day my last four platelets counts were 20,20,36 and i am so fed up of the side effects again has anyone else had the retux and if so how long did it take to work thankyou for letting me rant hope you all keep well.love valc

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  • Hi valc - hang on in there! You are not alone. I was on 80mg of prednisolone and it sent me off into lala land. The steroids did not work for me and I have also tried retuximab and that did not work. I have since had my spleen removed and guess what - that did not work either. Now I am on Romiplostim and that sends my platelets into orbit. From 2 - 965 in a week. So, we know Romiplostim affects my count but there is no pattern and no stability. I am struggling with the emotional effects of the condition as well as the physical effects. All I would say is there are MANY of us that know what you are going through and it is not pleasant. Have you used live yoghurt for your thrush? It works. Keep on going. it is a rocky road and a rollercoaster - thinking of you. NickyD

  • Hi Valc - Yes it does suck. After being healthy for 57 years and now having to deal with ITP the past year, it has been interesting to say the least. Especially navigating the health care industry. You will find that the variations and combinations of treatments are all over the board with significant differences in success or failure rates. That is the most disappointing part, finding the solution. The key is to be open to a solution and because something did not work, there are other potential solutions. It is a rollercoaster! I have had over 20 platelet transfusions, IVIG which you have not yet tried, Prednisone up and down, Rituxenmab 4 rounds, and now back to splenectomy considerations again, whcih I am very reluctant. One point on Rituxenmab... I did have some results as the last day of treatment I had to be infused with platelets as they fell to 8, but while weening of Prednisone last November the effects of Rituxenmab the counts increased to 58 after 4 weeks and remained there for 6 months. Unfortunately they then have recently fallen to 10 and now I am back on 80mg Predinsone. Hang in there, you will see unfortunately more disappointing news than positive, but keep in mind most that are on this sight are still suearching a solution and seldom do you hear on the successes because many have moved on. Don't let it get you down. Good luck!

  • Maybe try to see ITP specialist- e.g., my doctor Nichola Cooper at Hammersmith hospital. Not all haematologists are specialists in ITP as it is a rare desease. Dr Cooper had lots of treatmetns in mind for me. Retuximab is not the last option, there are also injections which you can try if nothing else helps, they help for sure as far as I understand. I forgot the name of medicine though. Best of luck, everything will be fine!

  • Hi Ic12345 - I was at the ITP conference on Saturday in York and heard a talk given by Nichola Cooper. She certainly knows her stuff. I was told that at your hospital they see between 80 and 120 ITP patients a month. That is in stark contrast to Warwick hospital where they see 4 - 5 a month. I saw my consultant this morning and have asked for a referral to your hospital. He is happy to do this as we are not sure what the next step should be. So I may see you in clinic when I come down? NickyD

  • Yes, I can imagine it's different. I saw many people travelling from far away to Hammersmith likely for that reason.

    Maybe see you there then, or, hopefully, we won't need any treatment soon!

  • hi there, just reading your blog, i would be vry keen to find out the name of this injection, my little boy is a chronic ITP sufferer and at this stage i am reaching out to try and give him the life he rightly deserves, he has had many treatments ie Retuximab, steriods, imuglobulins, platelet tranfusions etc etc and currelty on eltrombopag, with no success to date!!! heart breaking to say the least as he is only 5 years old and has been poked and pricked more times than i care to think about!! if you can can you please check and let me know, iw ould love to run it past my consultant to see wht her thoughts are on it!!! thanks a million :)

  • the injection is called romoplastine, iv been on it since January, it is the only thing that works . Iv had every other treatment. I makes your bone marrow over produce platelets . no side effects ,but its expensive on the nhs so it is the last resort crissy22a

  • Hi - no treatment, now wouldn't that be good....

  • thank you all so much for your comments i am seeing my consultunt today and hoping i can start coming down off the prednesolone good luck to you all

  • hi ,iv had all the treatments, none worked apart from the n.plate. I wish the doctors would put people straight on to it. Instead of making everyone suffer the terrible side effects of all the other drugs. Also they should tell all patients about the depression every itp person is going to suffer,BECAUSE WHEN YOU DONT HAVE PLATELETS YOU DONT HAVE ANY WHERE FOR YOUR SERETONIN TO BANK. So get serotonin from your doctor and it will save your life. It wont get rid of the itp ,but it will help you live with it. Also everyone sould read into leaky gut syndrome and gluten free, how did we all get itp . What is the reason. It starts in the gut!!!!! serotonin is made in the gut! Research, research.

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