I read all the time of peoples counts going up by the hundreds after ivig drip mine only went to 210 any thoughts please obviously mine have now dropped I am just curious why some people see a significant boost and others not : (

23 Replies

  • It could be your body's reaction to the IVIG. It doesn't work for everyone. Some people are better off taking Nplate or rituximab.

  • The first and second time,mine went to about 50 after IVig and then continued to rise to about 250 and stayed at a reasonable level for about 18 months. Both those times I was also on high dose steroids. I had it yesterday without steroids to see if it will have the desired effect, otherwise will prob try eltrombopag. Really don't want steroids again.

  • Mine rose to 210 with ivig drip ( cannot have again was really ill with it vomiting headaches and a rash just my experience ) my hematologist said the same dropped now to 70 back at hospital next week it is good to get different perspectives as I know I am learning all the time the different sides if ITP thank you : ))

  • Hi. I've I had IVIG about seven to ten times in last 30 years. (Losing count.) It is only ever seen as a quick fix with short elevation time. I was told max 5 days. If your body has the break it needs and the antibodies correct themselves then you can see a response for longer. But usually I go up to about 200 on it. Come through surgery and then it comes down. Once I had a good count for about five months (80 - well good for me!) but then had a virus and it dropped . Remember a level of 200 is in normal range and a miracle in ITP really! lowering expectations of numbers might be useful!! And remember if you have high numbers (as a registrar once warned me) it then puts you at risk of clotting! We can't eally win. I was also told 30 years ago that IVIG should be used sparingly. Max 5 times in a lifetime. Well I've gone over that! So I'm assuming the recommendation has changed.

  • It is very different in all cases I guess we live and learn with ITP don't we : ) thank you for replie

  • Yep, what I've learnt is that it's all highly individual, I've had it so long that I've stopped looking at numbers and just how I feel. I rarely get treated. I've posted before on here. I live with a count of 20-50 and don't have treatment. I think the haematologists differ in approaches which doesn't really help us as patients at times, especially when we listen to others' stories. Best of luck and stay well.

  • It can become obsessive I too just go with the flow and my body tells me as I feel very tired and bruise like now : ( I tell myself hey its only itp : )))

  • Yes, it's very easy to become obsessed by it. I had some therapy with a Health Psychologist about ten years in (back in the late 90s) which really helped and changed my focus and approach towards it. I am nearly always tired and bruise most of the time, but I try and build in a rest during the day which seems to help with the fatigue. I think I've become used to the tiredness now, body has adapted, as when I have energy it's a shock! But I make the most of it! It is 'only' ITP, but when you're in it, it can be overwhelming. And I allow myself to feel miserable about it at times, especially if it affects something socially or halts other medical treatment, but I allow that moment of irritation/anger. I find that easier than fighting the feeling and comparing to other 'worse' conditions. Because ITP for us, is the worst for us, when it's bad. Yes, there are worse things, but we live with uncertainty with the ITP and certain fears at times and I find it ok to acknowledge those times and not feel guilty that I'm feeling sorry for myself.

  • I struggle as I work full time getting up at 4.45 was not a problem now it is : ( find the tiredness is really hard at the moment and yes I totally agree worse conditions its the underdstanding of it which is hard to grasp it is the unknown we have this group which is a added benefit I find it hard at times to explain itp so I find I just say I tired ... I have a big playing field by where I live I go and scream when I am having a bad day it works for me :)

  • Working full time is hard. Well done for perseveringMy docs told me to go part time. But not everyone can. I went self employed which has helped as I can still work at home if count is low and keep safe and rest when I need to. But I know I'm lucky in that respect. Field sounds good!! Whatever works for you.

  • I want to carry on full time my personal oponion I dont want to be beat by itp :) my hematologist always ask do I need time of guess I must look like I need it : ) it is tiring though .

  • Is it about winning a battle or working within limitations? Stress certainly doesn't help platelet counts. I noticed a significant difference when Not stressed and pushing my body doesn't do anything other than make me more unwell. It's About a balance that works for you. And accepting that we have an autoimmune disease that means taking care of ourselves in the best way possible.I hope you find a way through that works for you. Stay well.

  • I try sometimes stress is just a way of life you can't escape it yes I will stay well.I read post your inspired I am.

  • It seems you have got used to live with 20 to 50 count.So if I may ask how frequently you check the blood,as in my case there is variation to a great extent one day it can be 50 and after two days it can be 10 or 100 as well .So frequent blood check is the only way I can monitor.

  • Hi. A consultant once asked me why I needed to know the numbers and that underlined for me the question On why I was being tested. If it's not to be treated then what is the point. I know my different bruises. I know the ones I get when over 20 and the ones I get when it drops. They differ. Only when I get those ones do I get tested. I have six monthly tests routinely to keep me on the books of the haematologists. My count can change in a 12 hour period. I.e. Can be 20 in the morning and 40 in the evening or vice Versa. If I think my count has dropped in relation to a virus I don't immediately bother with a test. Just go on bed rest for 24-48 hours. If bruises don't improve then I will test. Frequent blood tests I decided for me just weren't necessary and just fed into the negativity I felt at times of being a patient.

  • I can relate to this I said the same to my hematologist I think because I have nose bleeds and the petechie ( on my torso ) and like you i know my bruises and how tired I feel when they are dropping like now very much trial and error and yes it has been nice not to have weekly bloods I think it could be maybe because I still have after pain from shingles my hematologist seems to think this could be the case it is what it is and as we all know much worst illnesses just the uncertainty of the symptoms really :((

  • Every week up until I had my ivig now it has been 4 weeks go next week to be a human pin cushion still hate needles : ( all good though

  • Weely I had ivig so not monthly : ))

  • Yep, stress is part of our lives sadly and especially with ITP when it adds to all dimensions and complicates our lives when others don't have to think twice about stuff. Learning to know what helps your stress levels can be useful. Your field for one! I find talking to one friend who understands (trying to explain to others can be more stressful!) can help too, I've had a tonne of counselling as well (as well as being one) and talking does help, not bottling it up. It's amazing the difference. I hope you can find someone who will listen and feel less stressed by it all. And of course you have this forum. Take care.

  • 210! That's not 'only', that's v, good. My results after high dose (40mgs per day) Dexamethasone for 4 days followed by 2 days @ 60 grams per day of IVIG got me to 160 and I was more than happy!! IVIG does not last for more than a few weeks; is only a standby or pre operation infusion.

    At 210 be happy.

  • I am not bothered about counts and things I have learnt to live with it ... I had read people had higher counts after ivig .... Anyway have a good day take care : )))

  • I had 4 bags of ivig and it raised to 102 from 19 but two weeks later my platelets were 17 so my hematologist in the hospital said it failed so I can't try again, now the steroids have failed but she is putting me back on 5 mg. I wish it had worked because I still have no idea why I got it. They suspect a virus was what caused the ITP which in turn gave me myocarditis (congestive heart failure). It is so hard to deal with two illnesses at once. I really am going to try food and hopefully it brings up my platelets. I hope your totals stay up. :)

  • It is very much trial and error I cannot have ivig again had an awful reaction same with steroids so I get monitored it suits me I guess my only down side is tiredness still working full time by the end of the week I am exhausted ... you will get there it can be a waiting game and you can always rage on this forum take care of you :)))

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