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Does anyone live with low platelets w/o treatment

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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13 years 6 months ago #28284 by Kelirae24
Does anyone live with low platelets w/o treatment was created by Kelirae24
Ok I'm 26 done it all steroids rituxin ivig splenectomy promacta had a stroke a year ago due to nplate recently started nplate two weeks ago and I can't put my body through this again my whole body hurts I feel exhausted all the time I just want to give up n live with low platelets with no treatment I'm usually around five but in nine years I've only had two bleeding episodes and use ivig for only when I bleed bc it's getting less and less effective does anyone do this? I also want to try one of those natural doctors does anyone know the name for them? Thanks:)

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13 years 6 months ago - 13 years 6 months ago #28285 by babeflover
Replied by babeflover on topic Does anyone live with low platelets w/o treatment
Save yourself from all those medications. Check out what this internist, who for many years now does not use conventional medications, has to say about most illnesses, specially autoimmune ones. Download the mp3(free). here is the link.

wor710.com/pages/11589216.php

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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13 years 6 months ago #28301 by amberyard
Replied by amberyard on topic Does anyone live with low platelets w/o treatment
I'm now seeing an herbalist which has me on all kinds of organic herbs. Which I make into teas, passionflower for stress and dandelion for detoxing the chemicals from my body. www.mountainroseherbs.com/bulkherb/h.html

this is the website where she gets all her herbs.

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
13 years 6 months ago #28309 by Kelirae24
Replied by Kelirae24 on topic Does anyone live with low platelets w/o treatment
Is it working for you? Can I ask what ur platelets were before and what they are now?

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13 years 6 months ago - 13 years 6 months ago #28310 by crystal lee
Replied by crystal lee on topic Does anyone live with low platelets w/o treatment
Hello, I have a 2 year old who has lived with low platelets for 15 months!! Treatment doesn't work so we didn't have a choice but I can tell you it can be done ;) His counts were 0-3 for 10 months at a year old..now hanging around 10.

I also do not think trying homeopathy would hurt ;)

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
13 years 6 months ago #28313 by Kelirae24
Replied by Kelirae24 on topic Does anyone live with low platelets w/o treatment
Thank you:)

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13 years 6 months ago #28323 by Ann
Replied by Ann on topic Does anyone live with low platelets w/o treatment
children in the UK with ITP are rarely treated so live with low counts routinely. I am unsure why they don't go the same route with adults. There may be a good reason.

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13 years 6 months ago #28329 by crystal lee
Replied by crystal lee on topic Does anyone live with low platelets w/o treatment
The video from Drew Provan he talks about as they get older the risk of bleeding increases. He says in your 20's there isn't much risk, it may be because of other medicines they need to be on, or their vessels just get weaker as they get older.

Kelirae if you haven't watched the video it might ease yout mind if you do watch it, and you might feel alot more comfortable about not treating if that is what you decide to try


Good Luck!!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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13 years 6 months ago #28331 by amberyard
Replied by amberyard on topic Does anyone live with low platelets w/o treatment
They were at 63000 now 105000, but I did have 8 rounds of rituxan. Which they over treated me so my herbist is detoxing my body.

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
13 years 6 months ago #28347 by Kelirae24
Replied by Kelirae24 on topic Does anyone live with low platelets w/o treatment
Thanks definitely have to watch it I'm not really scared not to treat it I'm more scared of treating it I just feel like the meds do more harm then good and I want to get my life back on track

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13 years 6 months ago #28349 by KittieG
Replied by KittieG on topic Does anyone live with low platelets w/o treatment
I don't treat pretty much at all - stopped everything in April of this year. I will treat when I drop below 10k if I also feel bad and/or have signs of bleeding. I think my numbers hang out somewhere between 15-25 normally, but with dips to the 10's often enough. I've never had a read lower an 7, but eh - its possible I've had that.

When my numbers went down last month I did a 4 day pulse of dexamethisone but only got a short "bump" from it, then back to "normal" (not normal for most people, normal for us). Like you, I've just decided that the medications were worse than the ITP, so I stopped.

I would love to not be so tired though. And bruisy.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 6 months ago #28355 by Sandi
Replied by Sandi on topic Does anyone live with low platelets w/o treatment
This is really silly, but when I told my hemo that I was so tired, he told me to take B6. I did, and saw an improvement. It may have been placebo effect, but I've never really been susceptible to that. It's worth a try. You could also try Vitamin C for the bruising. Can't hurt. Some people have reported less bruising from drinking pineapple juice.

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13 years 6 months ago #28364 by John
Replied by John on topic Does anyone live with low platelets w/o treatment
I suggest eating "real" food (fruits & veggies) to get the vitamins you may lack. There is no other substitute.

Try something like yoga, Reiki or homeopathy to work on getting your body back into balance. Its still working for me after a bad 2011.

cheers,

john

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 6 months ago #28374 by Sandi
Replied by Sandi on topic Does anyone live with low platelets w/o treatment
Real food is best, but some people have problems absorbing vitamins from food. I am one of them and need additional supplements.

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13 years 6 months ago #28382 by KittieG
Replied by KittieG on topic Does anyone live with low platelets w/o treatment
I eat really well right now - lots of fruits and vegetables, almost no processed foods, no sodas, I haven't gone to a fast food joint in years.

I take a multi and a C, and the multi has a big bump of B's, but maybe an additional B6 would help.

Pineapple juice huh? Do Mai Tai's count?!?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 6 months ago #28383 by Sandi
Replied by Sandi on topic Does anyone live with low platelets w/o treatment

KittieG wrote: Pineapple juice huh? Do Mai Tai's count?!?


Only if you are playing Yahtzee at the time!

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13 years 6 months ago #28385 by Lady Elly
Replied by Lady Elly on topic Does anyone live with low platelets w/o treatment
I have been living with low platelets since Nov. 2011 and without any treatments. My platelets were running between 6k - 9k. In July, 2012, they did go up to 19k and 26k after taking the B12 injections. Last check was Aug. 2012, they were 11K. I have not had any bleeding issues with them that low.

My hematologist told me there is a man who has been living with 6k platelets since the 1960's and is o.k. Never had any treatments and he sees my hematologist twice a year. No treatments and seems to be doing fine.

I know it is risky, but for me, everything I tried did not work. The treatments for me were so much worst than the I.T.P.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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13 years 6 months ago #28443 by amberyard
Replied by amberyard on topic Does anyone live with low platelets w/o treatment
I'm in the same boat the treatments are far worse than living with ITP. Plus it doesn't build up big medical bills. I'm not treating ITP just living with it and eating right and Reiki seem to help me, I have a client that does it ( I went after work and oh boy did it help( before 63 after 105)). Taking a B complex which gives my energy for the day.

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13 years 6 months ago #28536 by KittieG
Replied by KittieG on topic Does anyone live with low platelets w/o treatment
Sandi:

Just wanted to say that I added in a B6 supplement to my vitamins and it has really helped my energy! I was kind of doubtful but I figured why not - it's actually a really cheap supplement. I could tell a difference from the first day.

Thanks!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 6 months ago #28538 by Sandi
Replied by Sandi on topic Does anyone live with low platelets w/o treatment
Great, Kittie! It made a difference for me too. I don't remember when or why it ended, but it helped for a while.

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