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Cure for ITP

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14 years 3 months ago #16114 by Dean
Cure for ITP was created by Dean
I recently responded to a "is there a cure for ITP" comment on another site. My response was that I was not aware of a cure for ITP. ITP is either Acute or Chronic. Acute meaning it will go away on it's own, chronic meaning it can last for several years and varies with each individual.
Does anyone feel my response is incorrect?
Thanks
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14 years 3 months ago #16115 by milly
Replied by milly on topic Re: Cure for ITP
Dean, I don't disagree but I find all this chronic and acute thing hard to understand, what is the definition of chronic and what is acute. I have also had different Doctors say similar things to me.
I was dx with ITP 18 months ago, done 10 months of pred starting at 75mg and tapered of them for nine months my counts very rarely are over 130. I have had no treatment for 7 months so am I chronic or acute. I have also had one Dr tell me that I have been cured (thought that was funny, never did go back to that Dr).

I will be interested to see what some of the opinions are from the long term ITPers are, as I am just a novice at all this. Very good question though!

There is no practice run in life.
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14 years 3 months ago - 14 years 3 months ago #16116 by Dean
Replied by Dean on topic Re: Cure for ITP
From what I have read, Acute ITP generally affects childern and often occurs after an infection caused by a virus and will go away on it's own. Chronic ITP generally affects adults, can last for years and will vary with each individual. Treatment depends on how severe the bleeding symptoms are and the platelet count. One can go into remission for several months or years but relapse again. ITP is an unpredictable medical condition, (I do not like the word disease) ITP just plain STINKS!!!
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14 years 3 months ago #16118 by milly
Replied by milly on topic Re: Cure for ITP
Dean, love to chat some time but dinner time here in OZ, but I will give you a quick back ground, many moons ago when dinosaurs roamed the earth I was a small child admitted to a major city hospital with a bleeding problem no dx ever found, fast forward 48 years and I am admitted to hospital with a bleeding problem, given every blood product you could name, listed as critical they could just not stop the bleeding (count of 1k). Seven days later left hospital with a count of 20k. While on pred counts bounced around anywhere between 40k and 130k.
So I guess only time will tell the rest of this story. Has ITP left me I don't really think so but then again maybe it has.

There is no practice run in life.
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14 years 3 months ago - 14 years 3 months ago #16119 by Dean
Replied by Dean on topic Re: Cure for ITP
Milly, usually in the chat room at this time every night. It is currently 2:15a cst USA.
14 years 3 months ago #16120 by
Replied by on topic Re: Cure for ITP
Without going into detail (because I have zero desire to argue with people right now), I completely believe ITP can be fixed. But I believe that about all autoimmune diseases, not just ITP. My son was the first fix for us. It would not matter what details I provided that "proved" he was chronic (even by hemas statements) people wouldn't agree. So not fighting about this here. I am patient #2 well on my way to healing an autoimmune disease. So, personally, I do think they can be healed. I do not believe in "remission" of an AID. If it had returned for someone it's because their body has gotten out of balance and putting the body back into a state of balance will make it go away. My opinion. Not debating. I have a close friend who had aplastic anemia that healed it totally naturally with diet alone. Took her two years, but she did. She's never "relapsed." I do think different AID's require different treatments. It's not a one size fits all for natural treatments just like there isn't with medical treatments.
  • 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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14 years 3 months ago #16132 by Sandi
Replied by Sandi on topic Re: Cure for ITP
Dean:

I think that you're initial response was correct.

Milly:

The definition of acute is "ITP that resolves in less than a year, with or without treatment". The problem with that though is that a person can go into remission within a few months, be labeled acute, and then relapse later.

Chronic is ITP that does not resolve within a year and requires continued or on and off treatments. At this point, I would say you are chronic with a partial remission.

I'm not one to pay attention to the labels though. They don't mean a thing. ITP can remit or relapse at any time for anyone.
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14 years 3 months ago #16150 by milly
Replied by milly on topic Re: Cure for ITP
When I was in hospital when I was dx with ITP the specialist that was looking after me said that this was a chronic condition and he thought I should find a Dr that I liked because in his words "I was going to me seeing a lot of him".

ITP hit me out of the blue and I expect that it does this to most of us. I don't know why I got it and probably will never know, but it has changed both me and my life, some changes are for the better some are for the worse.

There is no practice run in life.
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14 years 3 months ago #16233 by Dean
Replied by Dean on topic Re: Cure for ITP

milly wrote: ITP hit me out of the blue and I expect that it does this to most of us. I don't know why I got it and probably will never know, but it has changed both me and my life, some changes are for the better some are for the worse.

Same here. Not sure how or why and has definatly changed my life. Not sure that I can come up with a change for the better though. Looking back when diagnosed, I still think Stress is the cause as I went through a couple of very stressfull situations prior to diagnosis.
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14 years 3 months ago - 14 years 3 months ago #16238 by milly
Replied by milly on topic Re: Cure for ITP
Dean I suppose it all comes down to glass half empty or glass half full. The changes for the worse for me is I had to give up a position at my work that I have worked very hard for (my choice couldn't handle the jog on 50mg of pred).I still work in a lower paid job but now I do 30 hours not 50 and I am happy with this. The absolute worst is that my family has had the worry of all this and watched me go through the whole prednisone nightmare.

The changes for the better is all the special time I have spent with my family at a time that was very hard for me, they have carried me through with their love and I know now how much they care for me. I have also learnt that sometimes you have to walk in someones shoes to know how they feel (don't judge people from what you see) compassion.

I have also learnt that no matter how much money you earn you can't buy health, I look after myself better now then I ever have, don't earn as much money but I have a far better life.

I also every now and then remind myself of being in hospital waiting for bmb results and the relief I felt when it was just ITP not cancer.

If you feel as though stress is what caused all this I hope there are changes you can make to lessen the stress in you life.

ITP is not fun, the treatments are awful and you can at times feel like throwing yourself under a bus but don't to it because I can guarantee that tomorrow something will make you smile and you will will be happy to keep going at this thing we call life.

There is no practice run in life.
The following user(s) said Thank You: Dean, kimm
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14 years 3 months ago #16239 by benny
Replied by benny on topic Re: Cure for ITP
Milly, enjoyed your posting, well said and very positive.
Rgds Benny.
The following user(s) said Thank You: milly
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14 years 3 months ago #16272 by Dean
Replied by Dean on topic Re: Cure for ITP
Milly, Thanks for your response, very well said. I remember when diagnosed we went out to eat with family and even though I was surrounded by family I felt so alone because of the ITP diagnosis. The worst part of this was the depression I went through. Family definatly carried me through this. It was hard for me to accept the fact that I needed help for the depression. I lost all interest in doing the things I loved to do, cried all the time for no reason. Just felt completly useless. For about 12 years I worked a full time night job plus a part time afternoon job, Mon, Tues and every other Wed. Still work the full night job but have not had the energy to pull the afternoon job for a couple years. I went to doing one afternoon a week, 2p-5p. Do not even do that any longer. I just do not have the stamina like I used to. ITP or streched myself to far for to long.
I try to lessen the amount of stress but sometimes it is easier said than done. I remember the relief of finding out I had ITP and not Cancer. It was a huge relief.
ITP is definatly not fun, but then I think there are alot of other health issues that are alot worse.
milly, I really enjoyed reading this post, it made me stop and think, tomorrow something could make me smile/happy and keep going at this thing called life. :) :)
Thank You!!!!!