I am 65...just got diagnosed with ITP about 6 months ago. Platelets went from 100 to 41....goes up and down about 7 increments each time...
I am nervous when I don't get my blood platelets tested every 2 weeks. They aren't doing that and it makes me nervous!!! Any suggestions??
Hi. I am 59 I found out I had ITP about 18 month ago My platelets go from 29 to 90 lately but average at 40. I don’t bleed just bruise. But I do feel quite tired sometimes I have never been given any medication for ITP. I live between Uk and Thailand. In the UK I have a blood test every month in Thailand every 1-2 weeks (as it’s so cheap to be tested in Thailand) Last week my count went to 90 that’s the first time it’s that high in months this week it’s 40. I have done nothing different that’s just how it goes. You just have to get on with life I try to ignore and live my life it doesn’t really affect it , you just have to have a positive mental attitude, I just keep a check on the count
I was diagnosed about 6 months ago too. I live and work full time and I am not on any meds. My platelets sit at about 20 to 26.
I go every three weeks and I find the week I go is very stressful.
I have gum bleeds every night and I am so tired all the time.
They say to have no stress but how do you do that. Take care and I hope all goes well for you.
Wendy
My personal feel is its about the symptoms. So I have very few ...a little bruising and tiredness. Platelets recently 20-30. Last one 28...heamatoloist said come on 10 weeks time. No blood tests in between.
I have had it for 10 years and have come to my own pattern. Not too many tests they stress me and take time. I am better spending time for rest or exercise and even when low any heavier treatment makes me feel ill. I take 10mg of oredisnolone a week ...' maintennance'
So it's about how I'll you feel xxxxx
I was diagnosed in 2009, very few symptoms, just bruising, no fatigue or bleeding - well, a little bleeding in my nose and gums. I am receiving treatment, Eltrombopag daily. My last count was 169, but without the the tablets it would plummet. When it was very low, below 30, before treatment, I didn't feel any different from now. I suppose I'm just lucky that way. However, I just live my life, don't stress about it, after all I can't do anything more than I am doing at the moment. At present I am having blood tests every two months, but don't get stressed about numbers, that's all they are. Above all, I keep a positive outlook, I don't see ITP as an illness, it is a condition I live with. I feel that all those out there who are stressing about their condition are not helping themselves, but at the same time I know it is frightening to be told you have something that is incurable, but as long as you are being monitored and getting on with life, there is always the hope that a cure will be found. Good luck.
Hi I am 55 and have had itp for 2 years my platelets sit between 0 and 1 for most of the time. The highest they have been in the last year is 5. I believe it’s symptoms you should go by as well and not just blood tests. I am lucky that since I started azathioprine ( have had everything else) my bleeding symptoms have been minimal even though my platelets remain stubbornly at 0 - 1. I just try and carry on as normal and am quite relieved when I don’t have to have a blood test every 2 weeks as I find it quite stressful, and I am told by my doctor stress makes the itp worse. Good luck to you and try not to worry (difficult I know)
Hi I have had ITP over 15 years, the counts go up and down all the time (25-50) and apart from the odd tired spell I have no other symptoms. I have no need of medication and am currently only seeing the hemo once a year with maybe a blood test once in between with my GP. Only ever needed meds when a minor op was required. No point in worrying about your counts, its the bleeding and bruising that matter. Hope this helps.
Hi, I am sorry to hear you are going through this. I had to change doctors because I had to beg to get my platlets tested. They are at 34 now. The highest was 60. I would say if you can ask them if you can get them tested every two weeks. If they can’t honor that request find a doctor who will. You have to be your own advocate in this situation. My doctor was testing them weekly because my spleen is enlarged. I have NASH too and they think mine is serious But I can’t do a biopsy because he is afraid I will bleed out. They want to do it on my spleen I guess it depends if you have underlying illnesses like me. I am in a quandary. They can’t give me too much for the pain from the spleen pushing Into my ribs and hurts all the way to my shoulder. They say because of my liver. They have me on some muscle relaxer and tramadol but it doesn’t touch it. Anyway, listen to your body and don’t let them tell you itp doesn’t always cause pain. It depends on underlying diseases, if you have any. Good luck!
It is a strange illness and everyone is different my count sits at 21/45 last week bloods were taken 109 platelets rejoicing I think : ) I find the fatigue is a huge problem I fall asleep when I have physically sat down all day and done nothing ... In time you will find your own way of dealing with this illness just take one day at a time it will get easier.
I battled with fatigue a lot and I have learned to pace myself -I believe anti oxidants help with the bruising so I take pomegranate extract to help with that
I now listen to my body and if it tells me to slow down what I do now very hard though when working full time hey ho bills to pay : )
Yes I listen to my body too
I had 2 platelets transfusions that seems to work next test in 2 weeks so will find out if all o.k
Hi - I've had ITP since about 1998. I have a count of between 40 and 90 which fluctuates.
I used to be tested twice a year, then annually and now my condition is managed by my GP. I decide if I need a blood test in between an annual general blood test.
I have always tried to ignore my ITP whilst being aware I have the condition. I'm not on any medication and have only needed steroids once prio to an operation. My consultant has said that as long as I have a count of 40 or above I do not need medication even for operations.
My only advise to you is to get to know your own body and don't worry about the numbers too much. Be aware of you're brushing and go and seek help if you are genuinely worried or unwell. Don't let it rule your life.
Good luck
Dawn
I am 63 and have had ITP for 3 years. The first 3 months were a worrying time with blood tests daily at the very start, then weekly and monthly. After 3 months I was offered Eltrombopag and the blood tests have been at 2 months ever since.
Now I just get on with my life, I do everything and more that I always have done and don’t worry about my ITP. I have very few symptoms but I would know if my count dropped to the low teens as that’s the point I get bruising, blisters in my mouth and petechiae.
So learn to recognise your symptoms, your confidence will grow as you realise ITP is very manageable for most people.
Hi Dunn258, - No need to be nervous. I am 58 and have been living with ITP for over 30yrs with a current count of 3 (or 3000) and have no issues. I stopped testing years ago because every time I went the the doctors for a blood test they would freak out and want to send me to the ER for a platelet transfusion.
They would suggest a splenectomy - No guarantee - Not an option .
No Drugs - No Testing - No more experts.
Frankly I have never had a nose bleed. Does it take longer to stop bleeding - Yes
I have been pron to Kidney Stones for Years and have had 3 extractions. Each time we would order up Platelets prior to the operation to bring up my count to about 75,000. Days later I would be back down to 4-5.
I simply live with the count - I see no reason to check every 2weeks.
My Journey of ITP So Far...
Diet and ITP
NEW with ITP