New to Being diagnoised to ITP

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I have been sick for way over a yr. Finally in Dec 2011, they said I had ITP. I had platlettes and prednisone, and Ivig, sever times, Then I was told to take my spleen out. i did, I was suppose to go back to work ^6 weeks later, On the 6 week spot I got to work, and had rashes all over my legs, I ended up at my DRs office only to be sent to the hospital for 3 days of more platleetes and Ivig.My doctors neither one could understand why I had relapse so soon. I dont know how much more I can take. when does it get easier. I am on prednisone. no spleen, and I still dont have anserws.Shold I try to go to the Mayo clinic. I am also worried about my job. I really need some anserws now. . Thank You.

What have your counts been? If you feel you need a second opinion, I would consider contacting the Mayo Clinic. I assume you are close to the Mayo? Try to relax, stressing out does not help.

Sorry for the repeated replys. If reply does not respond right away, do not keep clicking on submit. I tried to delete, but would not let me. There are other treatments you may want to look into. Mayo will surely help you.

I agree with Dean, you need to see a haematlogist who is experienced with treating ITP. Platelet transfusions are not given for ITP as we kill off those platelets as quickly as we kill our own. Also splenectomy often doesn't work. The success rate is said to be about 65% although that rate is higher amongst the younger population and gets a lot lower for people over the age of 40 or so.

There are other treatments to try, you need to find a doctor who is familiar with them and can help you. Also it isn't important to get normal platelet counts, lower than normal are fine. What has your count been and what was it at diagnosis?

I agree with Dean & Ann, and I will add this.
Dont get too down over your ITP, in the beginning it seems overwhelming, but once you get the right Dr and on the right path to recovery (or at least maintenance) you will fell much better.
I know its much easier said than done, and Ive been there myself. So I can tell you from experience that you will improve, and feel better, both mentally and physically. You just have to hang in there and try to keep a positive outlook.

Good Afternoon, I am so blessed to find this site because I have been newly told that I have ITP and I know that this sounds strange to say but I am happy that I have answer to why I have these blisters all over my skin and in my scalp. I think that the hardest thing for me is that, I am tired most of the time and that I feel when my platelets are low (below 18,000) I feel so awful.I am very lucky that I have a hemotologist(?) that I am seeing every 6 months for blood work and info update but what I am wondering is that... I just feel that I don't know enough? Since my platelet counts are going back up on their own my doctor is telling me that I shouldn't take any treatments right now. Since my baseline test he has told me that I should wait and see then he will test me in December.

My question that I am trying to ask is that these "blisters" that I have are itching me like CRAZY but when I pop them they burn like crazy too and are painful? Should I pop them? Also I am wondering most of the times the fluid that comes out of the "blister" is clear but other times there is a little bit of blood? Am I making things worse? I also have a horrible skin rash on my left fore arm that is REALLY itchy. Does anyone have some type of cream that they can recommend to relieve the itch? :blush:

Thanks everyone in advance for any advice that you might have for me!

Low platelets makes many people feel tired, that's normal although a lot of doctors still don't agree, but we ignore them. But itching blisters is not ITP. Itchy is not ITP at all. So I'm lost at that bit. Maybe you need a second opinion.

I agree with Ann. Having blisters is not a symptom of low platelets. Itching isn't either.

How long have you had the itching blisters because fluid filled vesicles sounds like chicken pox. Just a thought.

Agree with Ann and Sandi. Those blisters are not from ITP. I assume your Dr told you the blisters are related to ITP? I think he may be associating it with ITP as he may not know the cause of the blisters. Do Not pop them!! This could cause other infections due to the open blister. I would not recomend just applying a cream on it unless directed by a Dr. You really should get a second opinion on the blisters if possible. To my knowledge this is not an ITP symptom. Sounds to me like a type of Dermatitis. Try searching Dermatitis on the internet abd see if the symptoms are similar to yours. Hydrocortisone is usually used for Dermatitis.

Sandi wrote: I agree with Ann. Having blisters is not a symptom of low platelets. Itching isn't either.

That info is wrong.

After months of misdiagnosis I developed hematomas on my lower legs and feet. And yes, they itched like nothing Ive ever felt before.
Also, the petechia that appeared on my arms and abdomen itched, and also stung when I took a hot shower.

ITP can manifest itself in many unpleasant ways.
You know your body better than anyone, if something seems "off" it should never be ignored.

I had petechiae that itched like crazy and it was eventually diagnosed as capillaritis. Are you sure it wasn't something like that?

www.skinsight.com/adult/capillaritis.htm
dermnetnz.org/vascular/capillaritis.html

I was told it was due to swelling and distortion of the my skins layers. Caused by the ITP.

The point to my previous post was to bring attention to the many symptoms ITP can cause, and that nothing that seems "odd" or "off" should ever be ignored of dismissed.

I did exactly that, and listened to a Dr who misdiagnosed me, and because of that, well, it wasnt pretty.

I didnt mean to discredit anyone's opinion, in any way. Theres just so much misinformation about ITP that I think its important to keep an open mind, and (as my hematologist told me) a little paranoia about symptoms, and would be symptoms is normal, and sometimes, a good thing

Don wrote: I was told it was due to swelling and distortion of the my skins layers. Caused by the ITP.

Are you saying swelling & distortion is a symptom of ITP??

Thanks for everybody that replied, I am new to this site so i hope I am replying correctly. In Jan when I was admitted my platlettes were 3000. They may go up to 500,000 and then drop back down to 4000. again they are staying between 17000 and 120000. I do stay very tired. on top of ITP. i have been diagnoised with CFS. As of right now I am on prednisone 20mg every other day.

Thanks so much to EVERYONE that replied! I know that I do need to do more research and talk more to my doctors! THANKS and HUGZ to all!

Melinda wrote:

Don wrote: I was told it was due to swelling and distortion of the my skins layers. Caused by the ITP.

Are you saying swelling & distortion is a symptom of ITP??

Yes, when platelet counts drop low enough, bleeding can occur from the capillaries in the skin. Causing petechiae and hematomas. Technically, the ITP doesnt cause it, the low platelets do. Which of course, is caused by ITP.

Don wrote: Yes, when platelet counts drop low enough, bleeding can occur from the capillaries in the skin. Causing petechiae and hematomas. Technically, the ITP doesnt cause it, the low platelets do. Which of course, is caused by ITP.

That's what petechiae is. Nobody is diputing that. What causes the itching though?

I don't think anyone would say for the poster to ignore his itching blisters, rather that he needs to see someone for diagnosis as it's not caused by the ITP.

My Dr told me the itching was caused by the distortion/swelling of the skin caused by the petechiae and hematomas. I guess the swelling and blood pooled up between the skins layers did it. I never got a rock solid answer, but, I got used to that when I started dealing with ITP.
Maybe they dont itch for everyone who gets them, but they sure did for me.

At any rate, no matter what causes it, it shouldnt be ignored.

Nothing out of the ordinary should be ignored - ever!

Never heard of distortion/swelling of the skin because of petechiae - I've got a bruise now which is a doozie, that is bleeding under the skin same as petechiae and this bruise does not itch.

I just feel some give too much credit to ITP for causing this and that when it doesn't.

Don:

I'm really not trying to start a dispute here, but over the years I've seen many things blamed on ITP that should have been investigated further for another cause. Doctors have been known to be incorrect.

"Petechiae (say "pet-TEA-key-eye") are tiny, flat red or purple spots in the skin or the lining of the mouth caused by abnormal bleeding from small blood vessels that have broken close to the skin or the surface of a mucous membrane. Petechiae may spread over a large area of the body within a few hours.

Petechiae spots range from pinpoint-size to BB-size and do not itch or cause pain. They are different than tiny, flat red spots or birthmarks (hemangiomas) that are present all the time. Petechiae do not turn white when a person presses on them.

Petechiae that develop quickly over a few hours may mean that a serious infection or lack of platelets (part of the body's defense against bleeding) has developed and requires immediate medical treatment."

www.health.com/health/library/mdp/0,,stp1380,00.html

Hey, I want to thank everyone for their input to this matter! Now to answer some of the of the responses that I have gotten, my specialist does know about the blisters and the rash so he has told me to use cream on the areas. About the popping, it is so hard to prevent from doing it because it happens on their own when I take a shower and or when I am washing dishes manually. So I feel that my situation is little like "Don's".

Just so all of you know a little bit about me, I am a little bit of a joker:silly: with my personality. Yes, I know that I have ITP but it will NOT get me down! Life is so short that I can't cry about my diagnosis... I have a family to take care of. I also work 2 jobs and I want to start my own business so I need to stay positive!

Some excellent news to share I just talked to a local reporter (MA state channel) that comes into my work all the time (I work as a grocery store clerk) and she and I are on a friendly basis. I asked her if there was any chance that she could do an investigative report on ITP in Massachusetts? She told me that she has never heard of it and she will look into it! :woohoo: I mean maybe... just maybe this disease can get some state coverage?! Sure hope so! People out there need to know that we are apart of American society and that we should not be shut in homes or in hospital beds. Live life to the fullest no matter how tough it is.

Never heard of distortion/swelling of the skin because of petechiae

That's a new one to me as well.


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smidgen wrote: Some excellent news to share I just talked to a local reporter (MA state channel) that comes into my work all the time (I work as a grocery store clerk) and she and I are on a friendly basis. I asked her if there was any chance that she could do an investigative report on ITP in Massachusetts? She told me that she has never heard of it and she will look into it! :woohoo: I mean maybe... just maybe this disease can get some state coverage?! Sure hope so! People out there need to know that we are apart of American society and that we should not be shut in homes or in hospital beds. Live life to the fullest no matter how tough it is.[/quote

Hope the reporter does a story on ITP.

That would be great to get more coverage for ITP. Some people know about it, but are misinformed. One nure told me it was caught from a virus (now, this could scare people around us). This could be possible--but it isn't the ONLY reason.

I also wanted to mention before my platelets "crashed" the last time, I had developed some type of allergy "swelling" on my lips and around my mounth. Later (and, after my platelets had crashed) I stopped one of my meds I was on--and allergy symptoms went away.

Medication for one issue can cause side affects that may need medication for that, that may need medication for that, etc. Recently I talked with a 71 yr old lady that was suicidal. She has been dealing with depression for 20 years and has come to the point where she had a plan to end it all. She felt she was a burden for everyone around her. I explained my experience with depression and told her that none of this is her fault and she needs to stop thinking that her family would be better off without her. She told me she was diagnosed with drug resistant clinical depression. I told her that the thoughts she is having is the depression talking and not the real her. I told her not to give up. It may be easy for you to end it, but it would not help your family and friends. Think of how they would feel if you ended it. Ending it is not the answer I told her. Then I heard of all the medications she was taking. I thought no wonder why she is having such a difficult time with depression. One med for this, one med for that, one med to counteract the side affects of another. Sure was sad to watch her suffer from this.

Dean, the sad part is that as we get older, we don't always tolerate too much medication like we did when we were younger. Our bodies just can't handle it all. This might have been going on with this lady. I know when my aunt was sick with cancer and heart failure in her later 70's, they had given her so much medication that she was having halucinations. Finally, when they cut back on the meds, she did a lot better.

DeeDee Marie wrote: Dean, the sad part is that as we get older, we don't always tolerate too much medication like we did when we were younger. Our bodies just can't handle it all.

Yep and it seems like the older we get the more medications we need now days.

DeeDee Marie:
I came down with I.T.P. due to a Shingle vaccine (live virus). It was 2 years ago. It was the live virus in the vaccine that caused the I.T.P. I had a physical 2 weeks prior to vaccine and was very healthy.

The nurse was correct about the virus, but it is NOT something that is caught. Many times it is due to a person taking a vaccine.

Lady Elly,
It could have been the virus that caused it, but could just have well been caused by one or more of the adjuvants or preservatives used. Both aluminum and mercury (aka thimerosol) are toxic to the body (and aluminum has been implicated as a major contributing cause to developing Alzheimers. Formaldehyde should probably only be injected into those already dead or science lab frogs. Or, it could be a combination of all these. Most drugs and vaccines have shown that some people can develop ITP quite quickly after ingesting said drugs or vaccinations.