Living with Low Platelets

I've been off all medications since Nov. 2011, tried Papaya Leaf Extract, which did not work).

My platelets have been running between 6k to 9k for the past 6 or 7 months. I was wondering if anyone else has decided to "NOT" have any treatments and live with low platelets that are less than 10k?

Would be interested in what your thoughts are on this? If you do have low platelets and no treatment, how do you feel most of time?

Thanks for any input.

From what I've seen on this board, most of the folks with counts like yours do try every treatment but there have been more than several who did not respond to any treatments and as a result go without treatment. Some have participated for years on the board with low counts like that.

If it was me I think I'd try all the treatments available. Erica

I guess it depends somewhat on how you feel and symptoms with counts under 10k. If nothing is working and you can deal with it, then you do not have much of a choice. Mentally I do not know if I could deal with consistant counts under 10k. Hope I never have to.

i have had itp since 1999 and no treatments have worked for me. (although i have only tried pred, dex and intragam) i have lived wit low counts symptoms went away over time and i feel fine and normal apart from slight very mild petichiae which frustrates me and up until now i have been fine and not bothered by it. only recently i have been high stressed and having panic attacks about it i dont kknow why. i think stress may bring it on somehow. i dont know as i said it is very frustrating. just wish this would go away! as does everyone i supose! but i've lived with it since i was 10 and im soooo over it already! seriously doesnt the body get sick of fighting all the time.. like get pooped out from eating platelets for so many years... i only get petichiae sometimes i dont have it all the time. sometimes i get it every couple of months sometimes every 6 months sometimes a year or more. and its very mild and light. so over time it could get less or symptoms could get less i dont know. you can live with it normally for the most of the time. depends on your symptoms. i had really really bad random bruising that never went away plus lots of bad red petichiae and very bad mentral bleeding until a year or so after i stopped treatments and checking counts the symptoms got less and less and then stopped. still dont know what my counts are but i will have to get them checked soon because i want to go travelling. did i mention how frustrating itp is? haha

Melasund:
You said, "I have lived with low counts, symptoms went away over time." How low are you counts and what are they most of the time?
I do have lots of petichiaes and always have brusing. The brusing goes away after 3 weeks, but daily more brusing come along. It is not real bad, but yes it is frustrating.
However, the treatments were so bad that I lived in constant brain fog, not to mention the enormous medical bills.

Just gotta watch out a bit and not rush with movement. Whenever I've had accidents that have needed surgeries I've gotten platelet drops and the nurses have made blood tests to confirm that my rates are over 70 and could be operated.

I've never really been too careful about how to do things or where to walk, and so far I've always been fine. Pregnancy can however be somewhat stressful, or so the doctors've told me. I made an abortion because of my ITP, and don't think I'll ever want to go through pregnancy, at least I don't think so right now.

I got an IUD, so I'm not getting periods, and whenever I did it was just a huge bloody mess, but thankfully that's gone now.

I always have bruises everywhere except facial area (don't really hit it anywhere ). I've learnt to accept them and my boyfriends have never had any problems with em.

Single digits are not to be taken lightly. If you have treatment options -- treatments you know work or treatments you haven't tried yet -- I think Erica is 100% right: try them.

My counts bounce around 5, 10, 15, maybe 20. Sometimes I'll get up higher than that. If I had treatment options, I would take them, if not for me then certainly for my family.

I have taken several different treatments and none worked for me. I took 4.5 months of Predisone, 4 treatments of Retuxin, 15 treatments of IVIG, and a few months of Danazol. Took Papaya leaf extract for 6.5 months. None of the treatments worked for me.

I will continue to look for a treatment if anyone has another suggestion.

Thank you for your input on the topic of living with low platelets. It is greatly appreciated.

Gort wrote: Single digits are not to be taken lightly. If you have treatment options -- treatments you know work or treatments you haven't tried yet -- I think Erica is 100% right: try them.

For me there doesn't seem to be any as my type of ITP is kinda rare. My spleen has been removed, didn't help at all, and I don't think single digits are that serious as I've lived my life like this for 21 years and I'm not really scared about things at all.

lady elly- i havnt had my counts checked since i was 12! my symptoms just lessend/stopped. Although i know i still have itp because i do occassionally get petichiae although they are very very minimum like 5-6 dots they are very pale and only on one ankle for sum reason. i dont bruise i dont have blood nose heavy periods headaches fatigue nothing at all when i get a bruise, it's from heavy impact (knocking my shin etc..) its very small and it heals quickly, i was like you i had dreadful and spontaneous bruising constantly and petichiae were everywhere my bruises never went away at all didn't even budge unless i had platelet transfusions, my period was never ending a nightmare! I dont know how or why but the symtpoms just got less severe and then stopped. i have pretty much done everything i have wanted to do except when i do get the light petichiea i lay low, however not getting my counts checked i do sometimes "hide" and stay indoors even without symtpoms because its always in the back of my mind. It's not going to be the same for everyone but i think maybe vitamins work but i think they take aaaages to have any real affect. i have only really just recently started taking them. I think this because when i was younger, i had to get hospitalised becasue i had a very bad period and i started to get anemic and my platelet count was on 0. my mum gave me a super multivitamin the night befroe i was to go into hospital and when i went to hospital the next day i had another blood test and my doctors were amazed at the effects from it. my hemoglobin went up (not hugely dramatic or anything) but enough, so i didnt have to get a blood transfusion it only slightly raised my platelet count up to 16 still really low and i did have to stay in the hospital for 3 weeks (mostly coz i kept bleeding) i was drinking these horrible bottles of liquid iron i think it was called ferrogon or something sooo fowl!!! i had my first platelet transfusion that visit!

i dont know about vitamins or anything if it really works but i'll try it for a while.
for years and years now i have never been bothered about it until now, not becasue anything has changed but becasue i want to do travel and i definitly want children in my future so the whole thing is starting to freak me out a lot! which i personally think makes it worse. as soon as i stress full on constantly i will get those pesky petichiae its sooo mild but its there!!!!! i think you can live with it for sure at low counts as long as you're not bleeding. bruising and petichiae is deal-able but blood noses and extreme periods is hard. for me, it came down to hospital visits, but i wouldnt have done it if my doctors didnt suggest it. they were very supportive and positive for me!

Melasund, from what you say I doubt you've got a low count at all. It is normal to get a few petechiae, people without ITP get them, especially in places where the blood might congest such as the ankle. It is such a shame that you spend time not going out when you don't even know what your count is. Not that I'd stay in at any count but that's me.

I wish you'd get a blood test done. I think I'm more desperate to know your count than you are. I'd be really glad to know that it isn't low.

i have to add that one of the reasons i did "isolate" myself was when i was 12 my last count/hospital visit, was becasue a girl at my school beat me over the head with a chain. (she had major issues of her own, and was renowned for beating up on other kids, i dont know why she kept getting away with it. i suppose it's to do with her traumatic background) however i had to go to hospital and get a ct and blood and i had the worst registra doctor at the time who kept taking vials and vials of blood was really annoying! anyways everything was clear and ok but i had egg bumps all on my head and a black eye that was also scratched down my face and my platelet count was around 2k at the time. my doctors were absolutly furious with the school and the school did nothing but they made me work in the office so i wouldnt "run into" this girl again. it was completely ridiculous, i ended up leaving school as soon as i could and since then it has made me very nervous about things as i was completly caught off guard. i did see a psychologist and her and my gp decided i should take anti-depressants which i did but i hated it and i knew that it wasnt the answer i wasnt actually depressed i was just scared. so basically they are the reasons i can be isolating. I'm not like that all the time not frequently either, just very occassionaly i have my freak outs.
it is possible my counts could be higher i dont know what the chances are but i know that every time i step into a medical centre i just go into scared sissy mode. I will definitly get my counts checked - i will have to anyways before i start planning any travel. but it's just been sooo long since i have thought about it although it has always been in the back of my mind but it's never bothered me..

That sounds a very scary experience for a child. It sounds like the same here where schools are not very good at dealing with bullies and it tends to be the victim who has to make changes to their life rather than the bully.

I wish I lived near you instead of the other side of the world, so that I could come with you to the hospital and support you in person. Maybe the wanting to travel will be the push you need to try to overcome your dislike of visiting the hospital.

yeah the bullying was the worst i hated that more than i hated a hospital. i cant wait to travel ive never been out of the country before and i have seen my friends do their travelling thing i am at the point where i just gota bite the bullet and get my shiz together! if only there were at home tests like diabetics have. that'd be handy! :lol:

Lady Elly, this is a good topic! I've been thinking about living with low platelets a lot lately. I just can't tolerate the side effects of the meds, so am on low doses of prednisone 7.5-9mg. I wish I could get off that too but trying to stay above or around 10K.

I haven't had any problems when my counts get below 10K, so over the years have gotten more and more comfortable with low numbers. When I was at 1K I had no symptoms at all, no bleeding bruising or tiredness. Yet at 20K I've had bruising. I think my platelets are behaving differently at lower numbers,(micro particles, activated plates) because it has been consistant that I have no symptoms below 10K. That doesn't necessarily mean I'm safe- honestly I don't know what it means!? hah but I've developed a sense of trust that I'm okay.

Have you thought about Promacta and NPlate? They work well for most people and even can put some into remission. Thats not common but a gal in my hemo's office had 3 weeks of Nplate, her platelets went way high, slowly drifted back to normal range for 2+ years.

Ques: does anyone know the statistics on ITP brain bleeds? How common are they? There is an interesting thread about brain bleeds if you Google "brain bleed pdsa". People tell their experiences with it. Its important to know that its a risk and would be terrible to have that happen. All said, I guess we have to choose our risk.

Posey - watch the video. It can give you some insight to the percentages.

Which video?

The Drew Provan one.

That is a great video. Good info plus his voice is so kind and caring. I had seen it before but watched again and heard something new. That ITP people who are over 60 years old have a much greater chance of having fatal and non-fatal bleeding than a younger person. Stands to reason.

And he said what we already know, that most life threatening bleeds happen when count is below 10K. And that most people do fine below 10K, its hard to know who will have a major bleed.

Poseymint:

Have not thought about Promacta or NPlate seriously. I don't seem to do well on medications. However, if I thought either would hold my platelets above 20 or 30 for a long period of time, I would take the meds.

With the low platelets of 6k most of the time keeps my life in stress. One day I'm o.k. and next day stressed out due to several bruises and petichie. I'm tired a most of the time.
I could not continue the IVIG, nor predisone. All became too much for me to tolerate.

I watched the movie by the Drew Provan. Doesn't sound great for people who are 60 + with low platelets. Of course, not as active a life style should not be as risky.

Thanks for all the input on living with low platelets.