Hi there, I was diagnosed with itp about six weeks ago. Had horrific bruising on legs and was feeling generally unwell. A blood test was taken and I was rushed into hospital with a platelet count of 1. Initially responded to steroids but then platelets dropped to 0. The next treatment was 5 days of immunoglobulin which had virtually no impact, only raising the count to 7.
I am now on n plate and was delighted and relieved that my platelets were at 90 on Thursday, when I was given my second injection. After the first injection saw a marked improvement straight away and was all set to return to work. Unfortunately, after this second injection I feel horrendous. Have slept all weekend and have horrendous aches everywhere. It feels a bit like flu.
I'm panicking to be honest. If this is how n plate is making me feel then it isn't going to be a sustainable treatment. I have a little girl and husband to think of and have to try and get back to work.
I'm feeling really down so any thoughts would be much appreciated. Thanks
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Caro40
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I can totally relate to your experience as I have been down exactly the same path as you with being unresponsive to prednisone and IVIG as well as quite a few more treatments before I started on NPlate.
You are actually quite fortunate that you responded so quickly to the NPlate as it initially took me many weeks but thankfully it worked and I was on it for 5 months before going into remission.
The only side effect I experienced was a mild headache but I do understand that it is common to get joint aches and a flu type feeling.
What dosage amount are you having at the moment (eg 4mcg/kg, 6mcg/kg?) and what is your count doing? Once I began to stabilise I was only having a 2mcg/kg dose every 3-4 weeks and so the side effect was only minimal.
You could be quite fortunate in getting access to NPlate so early in your treatment as my specialist had been to a conference where they advised that they were getting very good outcomes for patients who were put on NPlate within 6 months of diagnosis and many were going into remission and this is what happened to me.
I know that it is easy to say but see if you can hang in there as you never know what can happen.
Thank you for this; it's really helped give me peace of mind. I am not sure of the dosage but will find out on Thursday. Maybe they can look at reducing the dosage which would lessen the side effects ?
I too was surprised that they offered n plate so early on and know I need to persevere. It's just I'm finding it hard as have spent the last three days in bed feeling as if I have flu!
My count was 90 last week so I'll see what it is when I'm back on Thursday.
Hi caro40 I have been on pred. for over 8 months now on my 5th injection of Nplate finding side effect horrendous. Struggling to walk some days with pain in my knees, wrists, shoulders. Pains in my arms. When discussing this with my doctor he seemed surprised. Wouldn’t mind so much but my platlets r dropping. Sitting at 30 this week. Helping me cope with my illness to Read that I am not alone.
Thank you for your response Robert. This is very encouraging news for people who are put on Nplate at an early stage. I was told my body was responding very well to Nplate; went from 13 to 94 to 375 to 455 to 225 and the last visit was 111. Please note the mcg started at 320; 125; 60; 60; 60 and I believe the last mcg was at 65 as my platelets were 111 which I believe is a good number as I saw where someone mentioned do not worry so much about the number; but how you feel. I wish the doctors could be more specific and let someone know the underlying cause of this and if it is viral (like a cold/flu; etc.) what precautions to take and if there condition is mild or severe; but they do not want to disclose too much for various reasons. The thing that concerns me is when I read if the count goes too high; it can cause blood clots in the heart/lung; liver or stroke etc. Naturally one would be concerned of this outcome. I am happy you are in remission; and I am keeping my fingers crossed and trying to regain my faith and hope that I will too be in remission soon .... as I have been feeling more fatigued and tired during Nplate injection therapy. which is of concern to me.
Bless you, hope you start to feel better soon. I'm also like you I was diagnosed last month but my doc treating me with very high dose of prednisone which gives me dizzy head when on my feet, can't eat chocolate so unfair. Iv gone from 7 to 141 within about 4wks next blood test 7th sep keeping fingers crossed platelets have staid up and I can come off meds, tho doc has warned me there's a 50/50 chance will drop.
Positive thinking, changing my diet and reading other people's stories gives me hope, everyone on here are so kind and happy to answer any questions.
Thank you. You're right. Everyone on the site is really kind and it makes a big difference having people who understand what it's like.
Did you notice a difference after changing your diet? Think I read that itp has been linked to vitamin b12 deficiency and it's recommended that you eat dark , leafy vegetables. I 'm thinking about getting a blender to make smoothies. Worth a try.
I read about leaky gut/itp. So Iv only just started a gluten/part dairy free diet, funny have just bought a blender too as 2 of my sons love smoothies. My eldest here at mo just made me a spinach. Mango. Goats yoghurt. Pineapple, coconut milk, chia seeds smoothie, tastes very nice. Just a little of all. Fingers crossed that it helps give me some energy so I can play with my grandchildren as usual.
I will give anything ago to come off the meds, the side affects are horrible now. Hot face, cramp, heartburn, dizzy head, cant eat chocolate (causes so much pain in stomach so cruel lol)
I read something about leaky gutt too and was wondering the same thing. I do not believe I can eat dairy anymore as it does upset my stomach. i love cheese. I have my cereal every a.m. usually with almond breeze milk ... it is lactose free and nondairy; and I have carnation french vanilla or hazelnut in my coffee (no milk) .... that smoothie sounds good with mangos; pineapple; coc. milk; etc. I had no idea one could not eat chocolate as I was going through my cravings at one point; but not 2 excess, i do love my hershey almond bar; but now will thing twice. I did feel dizzy too and now as well on Nplate; but thought it was from these bifocal glasses as I use the dollar ones in the store usually except for driving or on computer. I read there was a pill called REVOLADE for ITP .. everyone should explore all options and as I read do not have a splenectomy as most people still experience ITP ..... Best wishes for all
hi Caro40; yes it is nice to share our experience; strength and hope with others who understand. I read Vit. B12 deficiency too; but was told 3 yrs. ago i had plenty of it as I was then taking the vitamin. I also read Vitamin C 1000 is also a good source too. I discovered when reading that cauliflower; kale; spinach; broccoli are all good veggies as well. I have been eating much better now once I realized I needed more veggies but read to be careful and wash fruits/veggies with apple cider vinegar & water to reduce pesticides; etc. if one cannot buy organic as it is very expensive. I hope to buy a blender too soon so I can mix these ingredients. Also, celery juice is very good. Best of luck to all with ITP.
I also have a hiatus hernia, for some reason it caused so much pain in my stomach whenever I ate chocolate but my doctor has changed my medication now taking omeprazole and all is ok tho I've put on over half a stone with the steroids so need to watch what I'm eating!!!
hi Lin6 I am happy to hear your platelets have gone up and hope you can go into remission like so many others have. I am feeling very lethargic since my last Nplate injection and a bit depressed. I read a lot of others felt this way and were put on Duloxitine for fatigue; depression and painful joints. I also read where one person had Vit.B12 injections for mood and stress as I am sure we all have experienced this. Another person was put on Doxepin to reduce the stress as it was explained Platelets affect the serotonin. I do want to remain hopeful as you are; but having difficulties with being so tired. I am trying to walk and stay active but have not done the usual things I was doing such as my yard work; gardening as I was worried about same as it is very strenuous and I do not have the energy as I used to. I even wanted to join a gym but have not gone yet. As far as eating right, I was doing pretty good; then got the hungry horrors and was craving all the wrong food. I suppose I have to keep the faith like so many others and keep pushing myself and put one foot in front of the other. Will meet with hematologist Friday and hopefully he will have some answers for me. Best of luck to all and do not give up hope.
Let us know how your appointment goes tomorrow please, best not to put too much pressure on yourself. Take everyday as it comes, I found that some days were soo much better than others that's when I'd do jobs. Bless you. Take care
Hi Lin6; thank you so much; I am already getting worked up thinking about going tomorrow; and I see how so many people have been treating for years and years. I also realize how blessed and grateful I should be when I see so many patients in the Hematology Dept. who have much more serious illnesses and using Nplate is a somewhat new medicine which had to be approved and meet a certain criteria; but I am still feeling so alone; isolated and scared as my friends do not understand what I am going through at all ... and I do not wish to discuss it with them as they all have their own problems ... but am grateful we can all share our experience with each other and give moral support. . I was in the process of doing some jobs around here and put everything on hold as it indicates nothing strenuous; and I must admit I did lose interest because I was putting too much focus on this situation. I hope to get good news tomorrow; let's see; but I do hope my questions are addressed in a way that I understand more fully, Thank you Lin6 for responding. Bless you and take care as well.
Bless you, we all know how you feel. I was so worried this time last year when mine started but now feel so lucky I responded to the steroids and haven't needed any more treatment since Xmas, my platelets went up to 148 but are sitting at 89 now which is brilliant.
Will keep everything crossed for your appointment tomorrow.
Hi Lin6; I am happy someone understands how I feel as I have no one .... but myself .... it is nice to know we have some sort of mentor and moral support here ..... I am happy you do not need any more treatments as it seems to be a long haul; my last 2 counts were 111 and I believe last one at 77 which I believe is OK as I read someone said don't count the numbers unless very low. Can I ask you if you changed your diet or was there anything you did different to help improve platelet count beside the treatment? I have been trying to eat better; but not this week with a clam roll and a piece of steak cuz I do not feel like food shopping yet ... but gonna try to buy fruits like watermelon; strawberries; etc. and my veggies (peppers; carrots; celery; etc. ... Thank you for being so kind and thoughtful and I wish you continued good health as well .....
Hi caro, Chin up . Poor you . It is a horrible thing to be going through. I know how you are feeling. Ive had ITP for 4 years now. Been through the ups and downs, its not a nice feeling .But,,,i would honestly recommend that you ask your consultant for Duloxitine , firstly it will stop the aches and pains and it will help you cope with horrid feeling of dispare you feel . I have been on Romboplostim now for 2 years now and it is the only drug that has worked, with no side effects.
Hi crissy22a: Oh boy 4 years of this god bless you; as I am new to this treatment and already feeling down. I am going to ask my hematologist about the Duloxitine as I have experienced the swelling in hands; knees and feet during the summer most with some aches as well and feeling lots of dispair right now. Thank you crissy22a for the info and I hope this well help control my depression. I wish you the best.
My daughter had severe pain following her first Nplate injection but has been great with the ones that follow. She had pain killers at the ready for subsequent injections but never needed them. Good luck!
Thanks. I spoke with the nurse today explaining how unwell I am feeling-another day in bad with severe pain and the consultant wants to see me in the morning to check my count. I'm hoping it has stayed up and that he will be able to prescribe strong painkillers!
Thank you, will take note of the different medications just in case count has gone done and I can be prepared to ask questions. Tho going to try n keep a positive next 3 wks, well that's if steroids let me!!!
Good luck to you both, hope you also have better news soon caro40
Lin
Hi, been through all the usual ITP meds over the last 5 and a half years, Started Romoplostim about 4 months ago and is the only one that has worked and kept my count hovering around 50, which for me is fantastic! Side effects have been migraine type headaches after the jab, which I still have. Uncomfortable Flu symptoms I have had, and they were really horrible, but over the weeks have mellowed to a slight sore throat, higher temperature and slight back ache which I can handle, and now only last for about 24 hours. Really hope you begin to feel better soon, romoplostim seems to me at least to be worth persevering with and has better results than any previous treatments.
Hi went to get counts checked and it was at 15 today. Disappointed as had 90 last week. They gave me another injection and increased dosage from 250 to 350.
The consultant seemed to think that the bad reaction is down to a virus I've picked up which has caused platelets to drop. He was adamant that he's never known anyone to have side effects this bad. Said people sometimes get mild headaches.
I don't know what to think as reading comments here as shown that bad side effects can happen.
I guess I will just have to persevere and take painkillers.
I'm a bit worried today as have had 4 nose bleeds, only had 2 before I was diagnosed so not a clues what's going on. Fingers crossed it's just what happens and I'm just very tiered
Bless you, yeah they stopped just left my nose quite sensitive?
Didn't ring docs with it stopping and have had no other problems so just carrying on n wishing it was 7th sep. The dizziness is no better so want off steroids.
Hi Lin just struggling with the side effects of the injection. Lots of pain in joints. Feel a bit spaced out which might be result of increasing the dose. Not a nice feeling. Will find out what my platelets are doing tomorrow.
The thing is I have been on a gluten free diet for last few years as was having problems with my stomach. Still have read that it's beneficial for people with itp. There's loads of gluten free stuff in supermarkets now so it's not too bad.
From my experience your counts will probably fluctuate all over the place as they try to balance your dosage level with your count. Once the NPlate finally took effect after 5 weeks my weekly counts then went from 3 to 33 to 315 back down to 56, then up to 228, then 512, 403, 128, etc, etc.. This was of course on different dosage levels dependent on my count and at 512 and 403 I would not receive a dose hence the drop back down. This went on and on for months until I went into a pattern of approx 150 (dosed), 250 (dosed), 400 (no dose), 600 (no dose), 400 (no dose), 250 (no dose) 150 (dosed), 250, 400, 600, 400 etc,etc. What I found was that the full effect of a dose was felt 2 weeks after an injection as my count kept rising even if I hadn't been given any more NPlate. Make sure that you are not given a dose if you are at 400 or higher as your count can skyrocket (in my case well over 1 million once).
The 350 dose you mention I assume is 350mcg - do you know what dose level this is for you? For me 350mcg would be a L4 dose (ie 90kg x 4mcg/kg) - the maximum dose you can get is a L10 dose or 10mcg per kg.
Towards the end of my NPlate roller coaster ride before I went into remission, I was only getting a L2 dose (or 90x2 =180mcg = 0.36mls) which was very small and that may have been why I only had a mild headache as the side effect.
Hi there - my dosage is L5. Still very aches and tired. I know I have to stick with it. I'm not very patient! Don't know how you coped as you clearly had a really hard time. Thanks
thank you for your information on Nplate injection. I started out with 13 count; went to 94; 375; 455; 225; and last count was 111. The mcg's were as follows: 320; 125; 60; 60; and 65. It looks like the nurse missed one dose of the paperwork. Why didn't they stop my dose when it went to 455; etc.? I was told my body is reacting well to Nplate and that is swell; but for how long and why dose someone if their count is at 455. Last count was 111 which sounds good to me and I told nurse same. Therefore, I want to have faith and hope like you did and go into remission and discontinue these injections every week if my body does not need them and am concerned about blood clots in heart/lungs or a stroke if count is 2 high .... I am trying to stay patient like y0u did but it is wearing me down; and I am tired all the time now whereas before I started this I did not feel faituged so I am confused. Also I did have a headache as well; numbness in my 2 fingers; right hand; dull ache in calf and a jerking motion in my right arm on one occasion .... By the way how is your count now that you are in remission. I hope it is stabile for you and do they continue to check your blood for same. Please respond ..., thank you and best wishes to all ITPers ....
I wish you all the best with your treatment and hope that you can go into remission as well. I do not know what my count is these days as I no longer have blood tests, injections or see doctors as my ITP just went away.
The first symptom of my ITP was that I always had a small amount of blood whenever I blew my nose and so that is all I look for these days. If I see that and then the petechiae, I will know that my ITP has returned but so far all is good and life is normal.
hi robert; thank you for responding to me. I am happy to see you are in remission and stay there. I did not have petechiae; purpura; nose bleeds; etc, but did have small amount of blood in urine on and off which I thought was attributable to pap smear (nip; slice and dice) LOL .... I know it is not funny; but I never experienced obvious signs; however, aches in joints I will admit which is now known to be oseoarthritis; I do not wish to complain but I do hope I no longer need this treatment as it is wearing me down mentally and physically fatigued .... I hope life can be normal for all and I realize there is severe cases of this type of illness from what I have read; and I do hope all get the appropriate treatment for same.
Hi Robert; do you know what your count was prior to your treatment? Also, do you know what the standard mcg is as I read if the count goes above approx. 400 they shud not dose; and I wud imagine if your counts go up; they shud lower the dose. Could you please let me know if you have any knowledge of this. Thank you Robert; I look forward to hearing back from you.
My count varied between 0 & 5 and would not move even after all the other treatments (Prednisone, IVIG, Dapsone, Dexamethosone, Cyclosporine, Trans. Acid, Rituximab) until I was given NPlate.
You should definitely not get a dose if you are at or above 400 - I know this from first hand experience as I was given a dose at 395 and shot up to 1,084 but thankfully there were no issues and I dropped back down below 300 after 2 weeks.
The standard dose (in mcg/kg) will vary for everybody and for me it was a bit of trial and error until we found the right amount. The highest dose I was given was 8mcg/kg but towards the end I was having only 2mcg/kg every 2-3 weeks.
Oh boy your count was low and you sure did have a lot of treatments. I hear the prednisone is a horror story; also removal of spleen does not work. How long did you have ITP. I am sorry I ask a lot of questions. It is my understanding they administer the dose pursuant to the person's body weight; etc.; and I do not understand why I received a dose when i went so high. very confusing and my dose seems to be pretty high right now whereas my platelets are in a good range ??? Do you mind me asking how long you were on Nplate. I have read that individuals have a long duration of time receiving same as well as the other treatments. I am happy for your recovery and wish you the best and thanks for your advice..
I was lucky enough to only have ITP for 9 months before going into remission. I spent 4 months with a very low count trying the other treatments I mentioned and then 5 months on NPlate trying to balance the dosage amount once I got to a safe level.
There is another TPO that you may consider if the n-plate injections keep giving you bad side effects. It is a daily pill called eltrompaq ((Revolade) and works in a different way from n-plate. Good luck finding a suitable treatment. Derek
yes thank you for this information. i think I would rather take a pill vs. injection in my arm under my skin .... however, are there any side effects. ?
Hi I just started on Revolade and so far it has started working after 4 days. I live in Sweden, I had to refuse a splenectomy and suggest Revolade myself. I know they use Nplate here but I think it's a last resort.
No side effects yet...
Prednisone steroids are as everyone seems to agree an absolute curse, I started on 100mg and it made me bonkers!
They haven't suggested removing your spleen? They keep asking me if I could agree to it but I am not so keen as I have only had ITP since May and it's not a definite 100% solution either.
Thanks. I am struggling with n plate. Feel really spaced out since they increased the dose last week. They have never mentioned removing my spleen. Would resist this course of action anyway ; as you say it's not guaranteed as a solution.
Good look with the Revolade. The steroids were a nightmare!
Thank you Jason for your response regarding Revolade. I have been taking Nplate injection shots for 6 weeks now; and I am getting concerned and would much rather take a pill. I am feeling extremely fatigued whereas before this all started I felt wonderful but prior to that when I had blood in my urine which I believe was caused from a pap smear as I have never bled before, i felt a bit dizzy. I definitely agree with you and would not take prednisone due to the bad reviews; and I would not agree to a splenectomy at all, and I have heard people with splenectomies still have ITP and its symptoms. I wish you best of luck and am gonna ask or mention to nurse/doctor about the Revolade. Thanks again and best wishes.
I am very sorry for your condition and all you are going through. I was feeling fine before Nplate although I did have blood in my urine and was not treated at emergency room when I went in to check it out. This occurred after a pap test; otherwise I was feeling fine; but told my count was at approx. 47 from the doctor who did the pap test. I thereafter proceeded to go to Florida and visit with relatives and googled if it was alright to go on a plane and saw someone did at a count of 6. The small amount of blood in urine disappeared; I was eating well; and walking every day and felt wonderful. I came home to all these messages on my phone from the two (2) doctor's office; and went in to see doctor who informed me my platelets were at 13 and hence decided to put me on Nplate injection. Three years ago I came down with sepses and had an overall feeling of being very sick and was put on IVIG's which worked; and I had no further treatment for 3 years. The emergency room told me I had a chronic condition but did nothing for it. Hence now 6 or 7 weeks of Nplate and I am feeling very fatigued and concerned with this treatment and for how long. I live alone and have no one to help out and have to be my own advocate; and I am retired which is a good thing I must say for now as I am very tired all the time. I understand having children and work is a big responsibility for someone who is going through these treatments and have empathy regarding same. I wish you the best of better health and to regain your strength; and I am going to fully research this matter and find out the extent and what could be causing this. Also, it should be noted if one's case is mild/moderate to severe and if there is a chance of someone going into remission and coming off Nplate. By the way did you ask for a printout of your count and the mg's they are administering. i thing everyone should have this information documented for their own personal records. Wishing you better health.
Hi Caro40- I have a similar story to yours. I landed in the hospital with a count of 1,000. Steroids, Rituxin and IVIG did not work for me. I started the N-plate and I have terrible knee pain, arms and my feet. Sometimes my arms even go numb which is very scary. I ended up getting a bone marrow test and everything was fine. My doctor suggested I get a splenectomy because I'm 28 years old and should not be on medication my whole life. I'm thinking about getting surgery next month because Ive been on medication for almost a year with no remission. The N-plate makes my count go up and down every week sometimes at 50, 80 and if I'm lucky 120. Good Luck you are not alone some days I don't even want to get out of bed.
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