Hello, I was diagnosed as having ITP 5 years ago and seem to have had the same treatment given to me as to all other posters. Starting with prednisolone then azathioprine, rituximab and IVIG. Platelet count has gone up and down over these years ranging from about 15 to 30, only going above this after IVIG. IVIG and rituximab have only worked very short term and with only disappointing modest platelet counts, azathioprine made me quite ill and I am still on various doses of Prednisolone which seems to be losing its efficiency. Platelet count is currently 12 which is my very lowest and seems to fall at each monthly blood test.
My consultant has now offered me a course of Nplate and I am asking you all for your advice on the success and failures of this treatment. I have looked on the net and the advice given is not consistent, with some awful side effects noted, which does give me worry. Any help offered to help me to decide would be very gratefully received.
Hi, it did not work for me. I did not have any serious side effects apart from the disappointment of it not working. I had to try different doses over different periods of time - a bit like you are doing with the prednisolone. I saw it as one of the options to try when looking for something to balance my count.
It was mainly the possible side effects of nplate that had me worried, but on balance yourself and the other responses I have received have helped considerably. Thanks
I have had amazing counts with n.plate and no side effects at all. Last week i was up to 284. because i was so high, I missed an injection , dipped to 18 and had my injection yesterday and i had no side effects, only bruising and a few blood blisters in my mouth. Iv been on it since feb last year. The best treatment iv had in the last 2 years. The only problem is your tied to the hospital every week to have your injection ,but after all the horrible treatments we have endured this is now bliss for me. I use it as a shopping trip now. I have my day off from work on the day of my appointment and do the hospital the same day as my shopping . Go for it you,v got nothing to loose . all the best crissy22a
Hi I have had ITP for 9 years and tried everything the same as you, I have now been on NPlate injections since March 2013, started off having injection every week for about 6 months as platelettes were as low as 2 and about 3 months ago they increased to 400 so now I only go into hosp once a month and get 2.2 mg of nplate as this helps me for the month and then they dip down to about 5/6. But at least I.m not travelling every week and can always tell when my platelette count is down. If I feel I need the injection before the nex month I just phone the hosp and they tell me to come in for blood test and then decide how much nplate to give me. Hope this works for you and would tell them to stop your steroids as they are not good for you long term!!!! Good Luck.
Steroids are the big problem for me, diabetes gained from the continued use of them has just added to my problems. Thanks to yourself and the other kind responses I think that nplate is worth taking a gamble on.
Hi there. My daughter has ITP and has been on all the other treatments you have mentioned with very little increase in her platelets (and then only briefly after each does IVIG and rituximab. However they didn't stay up and started to decrease weekly. She has now been having a weekly Nplate injection for 4 weeks and her platelets have now gone up to 96! (before Nplate she was at 14). She hasn't had any major side effects so far that I know of and has been really pleased with this treatment so far and is happiest she has been for a long time.
Thanks for your reply, I have been really worried about the noted side effects of nplate, one website says all is well, works with few side effects, another frightens the life out of you! With the answers received, I think the risk is worth taking. Hope your daughter has continued success.
Had nplate for about 6 months worked so so then not at all. Tried all the others with little to no help always under the 40 s down to 5. I did 4 months of chemo for one time a month. I now have had counts ranging from 140 to 180 and it has been since september 1st 2014. I have not felt this well for a long long time. I know it won't be forever but. For now it is good and buying time for possible new treatments developed.
Hi, thanks for your comments. Great that you feel well and also I hope that your count stays good, chemo as yet hasnt been mentioned for me. ITP seems to have different and confusing treatments that work for some but not for us all. Nplate seems as though it is worth trying at the very least even if it only allows a holiday from taking prednisalone
NPlate was a great success for me and a life saver. I was consided a severe refractory case as I did not respond to any other treatments be it Prednisone, Dexmethasone, Dapsone, Intragam or Rituximab and my platelet count was below 5,000 for 4 months (even getting to 0). I couldn't even have my spleen removed because you need at least 50,000 for the operation. It took about 6 doses of NPlate starting with Level 1 and then at a Level 8 dose (1.44 mls) before it worked and after that I have never looked back. I took it for about 5 months and then I went into remission where I have now been for 3 months with a consistent count over 200,000.
The only problems I had was that it gave me a very mild headache and a few times I was given too large a dosedas they tried to balance the dose to the platelet level and even got to 1,084,000 at one stage but everything recovered without any problems.
Thanks for your reply Robert. ITP seems to be a very confusing illness doesn't it. All the other treatments have failed on me also, because of a previous problem, spleen removal is not an option, but nplate seems to be a safe enough option and well worth trying.
HI, thought I would let you know that my daughter has found out that once her platelet count has stabilised for at least 6 weeks, she will be able to inject herself. She asked because she had heard that another person had been doing this and her doctor agreed. She was getting very fed up of the constant weekly trips to the doctors and the hospital for the blood tests and then NPlate injection with a 2 year old toddler in tow! I think you need to have a proper medical fridge though to keep the medicine in.
Thanks for your reply, problem is that I am a real scaredy cat when it comes to injections, I have often said that to have ITP and a needle phobia is just my luck! Really hope all works out for your daughter, if you can self inject then it should give her independence back.
Really' my daughter would love to be able to give her own If help to not have to make that trip every week across town to the doctor.will definitely ask her doc this week about!!..thanks for da info.
My daughter is on a low dosage of steroids and Nplates.she try this before she had her spleen ans it started to fail her and now that she has had her spleen removed we are waiting to see how it works for her.so if u still have Ur spleen U might just wanna give it a try' wish u luck
Latest appointment with consultant and with platelet count in the mid teens, all change... I am not to have nplate as he wants to keep that treatment 'just in case' So am still on prednisolone for foreseeable future. each time I see a consultant, it is a different one which doesn't help. will keep the forum updated as and when there is any news. Thanks again though for all your responses
My daughter's ITP came out of no where at 27 . . She tried all of the recommended treatments nothing kept her counts up a total nightmare .Took Nplate every 2 weeks for 3 months which did increase her platelets but As soon as she missed a dose the platelets dropped back down. She has constant joint pain now from NPlate. If you don't see the platelets staying up after 3 weeks on Nplate don't continue the treatment. She was healthy, always fit always ate very clean(no sugar no gluten,organic) supplements you name it.. She was so sure things would turn around. Finally Had a spleanectomy after 8 months of hell. Her counts are up. She still eats clean but is always tired
Hi there, I have tried Nplate, but didnt seem to help me very much. I must admit that I wasnt on them for long. Maybe 6 weeks, but had bad headaches, and felt bit strange. Stopped taken them. My platelet are low and sit at 7 I take steriods on off, but they get the platelets up a bit. I find when I come off of steriods, I start to fill depressed I would like to ask if anybody else does?. I get nose bleeds bad headaches and bruises . Also bad fatigue.I really fill that this illness dose impact on your life,and should be recognised, as a disability such ,as is M.E. Cystic Myalgia. etc. As this Chronic ITP, should be recognised. Any comments welcome .
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