What is the highest platelet count an... - ITP Support Assoc...
What is the highest platelet count anyone has had? What treatment was given for it and what side effects were suffered?
I got to 720 on Nplate, didn't have major side effects...
Hi Nole
Did your count stay up at 720 for long?
NickyD
My high point is 200. Lowest was 4 when dignosed in July 2006. It seems to have settled into a pattern of between 100 and 150 since Riruximab treatment in August 2010. Last count was 144 in November 2011 and exactly the same 144 in June 2011. Next check up due 30th April so ???????????????
Thank you for raising this issue Nicky. I will set a poll on this in the next few days as it will help to have all the responses in a more user friendly form.
Hi Nole
My experience is that high platelet counts do not stay up for long. I have to take aspirin when mine are high.
NickyD
80 - with no treatment 
Hi
I got to 140 with Immunoglobulin infusions from a count of 10 a couple of years ago but have averaged 30 ever since.
Hi Morgan
It sounds like you are doing well at 30. Do you get bruising at 30?
Nicky
Now and again but nothing major. I've been stable for a year and a half so my specialist no longer sees me - only telephone consult which makes me a bit nervous ! I find the tiredness debilitating, comes over when you least expect it, luckily I have a sedentary job. Sounds like I have it really easy compared to everyone else.
Are you able to contact your dr for a blood test if you get worried about your count? tiredness is hard to work with. I am on steroids and they affect my ability to think straight. I also keep forgetting things and end up asking the same question two or three times. It makes me sound stupid - I know I am not and I know I cant help it but I do hate it.
You may think you have it easy but you still get worried. And worry can make you tired.
take care
NickyD
Thanks Nicky
Yes I can get a blood test if i need to. My recent memory is terrible too and getting worse - probably the medication for my blood pressure,
I've read your blog, I hope things improve soon,
Now that is interesting, my recent memory is awful. Today I had two meetings booked with two different people in two different places at the same time but I did not remember booking one of them. I had to cancel one and felt very silly. I put it down to the steroids I am on. I have been told that the steroids stay in your system for up to a year so perhaps you still have residues in your system.
My platelets are on the way down 968 on Thursday and 778 today. Back in on monday for next bloods.
Take care
NickyD
NickyD,
How do you feel when your counts are so high? Mine spiked when I was on the Prednisone (I think somewhere near 500K, but I was fairly out of mind at the time from the steroids and my memory of that time is fragmented). 968 seems like a count you'd be able to sense!
Hi SoporRose, the highest my count reached was 1400, but I had no way of knowing. The hospital phoned me with the count and I had to get them to repeat the number three times before I believed them. Too many platelets and you have sticky blood. Nicky
1400 — That's impressive. It's scary what goes on on inside us without our having a clue. I thought maybe a high count might bring some energy with it, but I guess not. Seems as if there should be SOME kind of benefit …
It surprised me that my count was so high when I felt no different, The hospital did not say to do anything different but I decided that with that many platelets in my system I should not over exert myself. Just in case. No benefit at all I am afraid.
I know what you mean Morgan when you say i have it easy compared to some people. I have certainly come round to that view myself as I have been lucky enough to be in remission since August 2010 following Rituximab treatment. Attending the Rare Disease Day event yesterday at the Royal Holloway University and meeting representatives from other UK charities it reinforced how lucky I am !
But you have had to live with the uncertainty of it all and that it may come back any time. It is not a walk in the park for anyone.
NickyD
Over a million...it didn't stay there long, gradually dropped back down into the 500,000 range. It stayed there for a few months, then regulated in the 300,000 range.
We have had a few spikes but overall our sons has gradually increased and held. When diagnosed he was at about 10K and stayed between that and 26K for two years and then 16m ago it raised to 60K then after three months maintained at 40k and than last december it was at 80K and has maintained the last few months. We have been really working hard with alternative doctors on keeping his diet clean from reactive foods and really concentrate on a whole, real food diet. We also really limit white sugar and most days he gets none at all. I truly believe that is making a huge difference, as well as many of the energy/homeopathic/ and herbal remedies that specifically work on issues with my son's body.
Hi dmyslins
I am interested in the food side of regulating ITP. Today I went to Addebrookes hospital in Cambridge to take part in their food intolerance survey to see if there is a link between food intolerances and ITP.
How do you define a reactive food? Have you had to wait for the platelets to stabilise before finding out which foods have an effect on the platelet count? I would assume that we are all different in how our ITP reacts to different foods.
Nicky
Hi nick,
We didn't look at it as which foods react to platelets. We look at it as a whole body affect and just which foods do my son's body react to at all. Our opinion has always been that if we take care of his overall health the platelets will take care of themselves. There are a few techniques we used to identify reactive foods. We used a blood test that determined food sensitivities and allergies. (we have used Genova diagnositics and Immuno labs). We have gone to a NAET practicioner that uses muscle response testing. We actually did the muscle response technique after the blood test and the practicioner did not know about the blood tests but thier testing technique yielded the same results and was not invasive at all. We now currently go to a doctor that uses electro dermal therapy and they actually test on the cellular level to determine what foundational issues in your body need support/repair. this with the diet made the biggest difference. The change in diet made a huge impact on his behavior and his fatigue and just overall demeanor...as we do the electro dermal we continue to see a positive impact on his platelets. I would truly suggest as a first line is to remove all wheat/gluten. Most people find doing this as beneficial. The way it was explained to me is that at some point, your body snapped. The body can handle much stress but at some point it becomes too much. So we just began peeling back the layers of stress on my sons body. Much of his was food related. As we continue to focus on whole foods, very limited sugar if any at all, no dyes and very limited processed foods, we continue to see improvement. good luck! its all hard but its one day at a time and its never where you begin, its where you end!
What a positive post.
Tell me, where do you go to get the blood test and what does NAET stand for? this is all very new to me and sounds like everyone should do this.
NickyD
where i live in the US there are medical doctors that use these labs but also non traditional doctors. I think you can look up the lab online and search for a doctor through the lab. NAET is Nambudripads Allergy Elimination Technique. For us the technique did not help eliminate allergies as it states. However I do have peers who it has helped tremendously. The Muscle Response Test (MRT) is the technique that can tell you things that add stress to make your body weak, ie an allergy. Another lab i thought of in addition to Genova and Immuno Labs is Meta Metrix. A popular book amongst ITP in the US is 'A Wish by the Spirit' by Joan Young. I only read this recently but would have found it very helpful and enlightening at the beginning of our journey.
Hi Nicky -
When I had those counts, it was back following my splenectomy with my first bout of ITP back in late 2008 - 2009. My hematologist took the wait and see approach and never put me on anything for the high counts. But they did come down. My counts stabilized and I was in total remission for a year and a half. Then last April (2011) I had a recurrence of my ITP and my counts did the roller coaster from April to September, this time the highest they've gone was where they are at now, and down as low as 1,000. My hematologist put me on Imuran in May and it is what has stabilized my counts again. My platelet count as of two weeks ago was 585,000. It has been in the 500,000 range since September. I've been in remission again for about 7 months now.
I have a blog that tells a lot of my ITP story, if you'd like to read it. It's emilyfmctyre.wordpress.com
Emily
Thank you Emily for sharing your story and giving us a link to your blog. I will Read your blog over the weekend. Best regards.
Dear Emily
Thanks for that. I am on the rollercoaster and have been for the last 16 months. Let us hope your remission lasts a long time.
Wow you were in hospital for a long time! Why? Were you bleeding a lot? And depression is so hard to deal with. I often get told I look really well, when inside I can be dealing with the fear of a very low platelet count and the corresponding anxiety.
Also, the steroids make me unpleasant to be with. I am short tempered, tired, irritable and say it as I see it with no filters. I dont like me - so how others put up with me makes me marvel. Tears dont go any way towards making me feel better when a lot of the time I feel so out of control of my emotions.
The only way to go is onwards and upwards.
Take care
Nicky
Nicky,
I had the same issue with being unable to censor what was coming out of my mouth. For three months I didn't talk to my mother because her feelings are hurt very easily nor did I socialize. The staff at the Cancer Center were incredibly understanding, but the other doctors I was seeing at the time (I developed ITP sometime in the week to three days before I was supposed to have a major operation) had a hard time dealing with me. It's only recently that the one I've continued to see seems to feel safe talking with me. I hate thinking what I must have been like.
I appreciate all your posts. You knowledgeable yet have so much respect for the experiences of others, and are unfailingly kind and supportive. Thank you.
Hi, we are all in this together and if I can bring comfort to someone else from my experiences then that makes my day. Steroid brain has gone now. One of the ladies that works for me did ask me to tell my consultant when I was high on steroids "please could you ask him to drop your dose so I don't have to keep hiding under my desk when you get angry!" Not all of her comment was a joke. Hey ho, these things are sent to test us and they certainly do. Nicky
Hello Nicky..... As you say the only way is onwards and upwards. The family motto of one of my favourite people (A W N Pugin) is ..... En avant ! Which basically means .... Onward, forward.
So I always think that if that was good for the man who designed Big Ben and the interior of the House of Lords, including the Royal Throne then it is certainly good for me.....So........ En avant !
my lowest count was zero when i was diagnosed and the highest i have had is 24 for a few days i have been between 1 and 11 since
how long have you been betwen 1 and 11? Your count is so much lower than mine. Are you able to function ok? Do you get lots of bruising and purpura? I am at 312 as of yesterday and that is a very low count for me - I usually come down 100 a day, so I hope to last the weekend. Am back in for a blood test on Monday.
Hi nickyD
Referring to your forgetting about things, I to suffer with this, feel like I'm going mad some days, my count is at 49 at the moment highest it has been 80 since being told I had ITP five years ago, iv never had any treatment and but have regular blood tests , I bruise , bleed from my gums, and heavy periods, but just resently having problems thinking straight, and finding it worrying as iv never taken any drugs for my ITP , so may not be the meds in your case ?
Could just be one of many of ITP's side effects??
Thanks for your blog , I have never spoken about my ITP before, apart from my doc, and she really don't no that much about it. Finding this site very interesting and informative thank you .k
Hi spk47 Lovley to hear from you. I know we all have moments where we forget things, like walking into a room and forgetting why we went in. That is not what I am talking about. It is far more serious than that and as you say - you can sometimes feel like you are going mad. If you have not had any treatment, it could be the ITP causing it. I make mistakes at work and I hate it. Since being on steroids the mistakes are more frequent. Although I stopped the steroids in October it can take up to a year for them to get out of my system, so I hope by October this year to be a lot less prone to forgetting things and making mistakes. Have a lovely Christmas. NickyD
Im 19 an got diagnosed with itp in September. I had 2 platelets. I went into my local walk in centre (worried it was meningitus) on the Sunday the symptoms where at their worst. I was covered in the pepura and recovering from the flu I felt run down as exhausted. The nurse said it was a viral rash as sent me home. But the rash kept on spreading and I felt so ill and looked white as a ghost, so I got taken to a and e where the doctor himself said it was a viral rash. (I was in a very bad way at this point) to which my sister shouted at the doctor basically sayin to atleast give me a blood test. (Just to think if w would have listened to a and e I would e dead) After the wait, I got called back in and told I needed to be admitted right away and everything was so rushed, the canular wasn't inserted properly. The next day I had to have an emergency platelet transfusion in which I refused to have done without my sister. When they put the platelets in the canular, it wasn't even in my vein but my muscle! They walke away an left me arm swelling and blackig out and being sick! My sister had to run and get the nurse (on which said my sister saved my life) so another screw up! Then I had to have a total of ten hours on the hominigloblin drip. I was then put on 90mg of STERIODS, which was reduced 5mg a week. And after a week I was allowe home. Does anyone else suffer from severe pains or is it another underlying problem? The hospital keeps pushing it aside even though I'm on cocodimol to stem the pain...
Sorry for the essay.
you poor love - what story, but welcome to the world of ITP. I had a count of zero once and you have to be very careful not to bang into anything so not to bruise myself. The consultant said I was not to do any kick boxing - as if! With the IVIg transfusions I got a retinal bleed and meningitis, so that treatment did not suit me. I do find that you have to manage some of the nursing staff. When I went into A&E I insisted on having a blood test done and the doctors were always surprised when my count was in single figures. One piece of advice I will give you is to keep a record of your count and your treatment. I attended hospital over 120 times one year alone and the consultant used to look at my chart for what they had given me and when. I was a lot more interested in my condition than they were so I took responsibility for keeping myself informed of what was happening to me. Fear is a big thing with ITP especially when you have not had a very nice experience. We do know what you are going through and on this site you will get lots of support. Take care Nicky
Oh and I was on the presnidone STERIODS (however it's spelt tey was nasty) which made me put on four stone! Luckily iv now lost four an a half stone since coming f thm in January. Also had to have a bone marrow biopsy too
my blood p.count was 1,953,470,as of 3 weeks ago my count has decreased to 402,000 per hospital treatment of hydroxeria and experimental drug 'agrylia',and the bland hepatic hospital diet.the concern now is that the p.count may drop so fast that a critical anemiac reaction could also rear its ugly head.by the way does any one know what the highest blood platelet count of record may be and I would live to chat with someone with similar high counts and/or any diagnosis ei.e.thrombocythaemia
I have treated in alternative medicine and weaned the patient of steroids drastically both DANOGEN and BETAMETHAZONE.
THE PLATELET COUNT LAEST WAS 1.3 lacks. Believe me I could achieve this from his 30k count when I took over.
Dr Murali
Read the testimonial from my patient on suvidhaa.org
Dr Murali
is danogen a good thing for itp??
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