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Unsure 4 years 8 months ago #62977

  • j.mudge.9690
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I was diagnosed with ITP 6 years ago, after "silently suffering" with it unknowingly for 5 years. I finally had an understanding of why I had been having some of the issues I have been living with.
As time has passed, things have only gotten worse. There's no underlying cause, and nothing has helped to improve my disorder...even slightly. Instead, it's continued to worsen slowly over time. I feel like my extreme fatigue is possibly caused by it. I can sleep for days with no problems.
Trying to explain my disorder to other people seems impossible. No one seems to understand, or even try to understand. I get an ear full (regularly) for sleeping so much and having additional issues. Every job I get ends up ruined because of my inability to keep up with my schedule or lack of energy/attendance...they don't try to understand either.
I feel like everyone sees and thinks of my illness as a joke or something. I try to explain it to people, multiple times over, and it just seems like no one can grasp what I'm telling them.
What am I suppose to do? What am I suppose to say? How can I get, and keep, a job?
I've felt so lost and alone with this. I've hit rock bottom, lost everything, multiple times now.
I feel so alone. I'm exhausted. I'm stressed. I'm depressed. I'm...I'm...so over this!!!
Advice please!!!!!!!

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Unsure 4 years 8 months ago #62979

  • 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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How are your counts? How are symptoms? Have you ever treated?

There are many other causes of fatigue....have you looked into thyroid disorders or vitamin deficiencies? I've never really heard anyone describe their problems with ITP quite like you did. It is very possible to keep a job with ITP.....most do, and fatigue is mainly only an issue when counts are very low. When that happens, most people treat to get counts up.

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Unsure 4 years 8 months ago #62980

  • j.mudge.9690
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My count continues to drop; the current number in unsure of. They were around 23,000 the last time I was given a transfusion. The doctors have ran me through everything else, but nothing did any good. My last and only hope is getting transfusions, which becomes time consuming. I used too be able to hold a job, for the most part, but with time everything has slowly gotten worse and seemingly more difficult. Just staying awake for a day seems like a challenge. Adding in my looking like I've been beaten on, which makeup can't fully cover-up, and my almost-constant aches and pains...I'm feeling like I'm stuck at a dead end; unable to turn around, go anywhere, or do anything (for the most part).

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Unsure 4 years 8 months ago #62984

  • 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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You said the doctors 'ran you through everything else". What was it?

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Unsure 4 years 8 months ago #62986

  • momto3boys
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My count continues to drop; the current number in unsure of. They were around 23,000 the last time I was given a transfusion. The doctors have ran me through everything else, but nothing did any good. My last and only hope is getting transfusions, which becomes time consuming. I used too be able to hold a job, for the most part, but with time everything has slowly gotten worse and seemingly more difficult. Just staying awake for a day seems like a challenge. Adding in my looking like I've been beaten on, which makeup can't fully cover-up, and my almost-constant aches and pains...I'm feeling like I'm stuck at a dead end; unable to turn around, go anywhere, or do anything (for the most part).


I'm sorry to hear that you are having such a difficult time. Platelet transfusions are NOT a good treatment for ITP. For some people, getting platelet transfusions actually makes their counts LOWER because they irritate the immune system and causes a rebound count decrease effect when the body burns through the transfused platelets (usually in less than a day). Platelet transfusions should only be used as a rescue treatment when there is active bleeding or if there is a need for surgery. If you have a doctor that isn't giving you any treatment other than a platelet transfusion, then you have a definite problem and need to get a new doctor ASAP.

What are all of the ITP treatments you have tried? If your doctor is as bad as it sounds like he/she might be, then you probably weren't given all of the options of the treatments available to you, or you perhaps didn't give certain drugs enough time to work. I have heard stories of patients on here trying something like Promacta for 2 or 3 weeks only, then giving up and going on to something else. Promacta didn't even begin to work for me until way after a month into trying it, so that it something to consider before discounting other treatments that you may have "tried."

A count of 23,000 isn't too bad for a starting place. Anything above 30,000 doesn't usually require treatment and is considered safe for daily living. If you have a history of counts, that would be useful to see what your count trend is. I also have to agree with Sandi that ITP is not usually debilitating in the way you are describing. I have had ITP most of my life (I'm 42 now and got it when I was a child) and have managed to live normally for the most part. I know that when counts are low many people have fatigue, but the degree of fatigue that you are describing sounds like something else. Looking into your thyroid or other deficiencies/hormone issues might be a good place to start!

I hope you can investigate for some answers and start feeling better. Please provide us with more details of treatments and counts if you want more advice about things that you can try on the ITP front. Hang in there!

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Unsure 4 years 8 months ago #62987

  • j.mudge.9690
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Varies different tests, scans, medications, etc. The only thing that's done the slightest bit of good is transfusions, but each dose is only 30,000 platelets and platelets "die" about every 72 hours and are supposed to be replaced by new platelets. Unfortunately, It's not that simple for me.

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Unsure 4 years 8 months ago #62988

  • momto3boys
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Well, feel free to post the details of the other medications. People here have lots of experience with ITP treatments. Regarding transfusions, I wouldn't be having any benefit from those, I can guarantee you. If you have ITP, your body will just destroy the platelets being transfused. The mechanism of destruction gets fired up, but this does nothing to make your body produce more platelets. A transfusion will not result in platelets being replaced by new platelets. If you have a doctor telling you that an ITP patient should be getting platelets just because they have low platelets, the doctor is wrong and doesn't understand ITP.

None of us here with ITP treat with transfusions and feel free to read about some treatments that can help manage the condition long term. Lots of people here have lots of different treatments work for them. Hopefully with research they will better be able to target which treatments are ideal for which patients because of more discoveries about antibodies, but for now at least there are more treatments available than I had as options when I was a child :)

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Unsure 4 years 8 months ago #62989

  • j.mudge.9690
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The transfusions aren't in hopes that my count with go up and stay up. The transfusions are just to temporarily give me some extra platelets to keep me from bleeding as much as I was when they started giving me transfusions.
As for medications, I couldn't even begin to name most of them. The only one I remembered was prednisone, because I remembered taking it for something else when I was younger.
Honestly, I've been living with ITP (knowingly at least) for 6 years now. I've learned to live with it, for the most part. Every now and then I go a little crazy and get a little depressed over it, because I don't know anyone else that has it. There's nobody, that I know or talk to regularly, that understands my living with ITP, or how it can affect a person's life, and most don't even seem to try to understand... Even slightly.

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Unsure 4 years 8 months ago #62995

  • 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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I think you need to start with a new Hemo. Most people know which treatments they have tried. Can you try to remember? We can't help you if we don't know what you have already done. The others are right, ITP is not treated with transfusions on a regular basis. There are quite a few options out there and ITP can usually be managed well enough that people can live normal lives. Looks like you just need to get on the right track.

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Unsure 4 years 8 months ago #62999

  • j.mudge.9690
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I agree with you. I know they did a bone marrow biopsy, an ultrasound to examine my spleen, they had me tired a few different medications (including prednisone) for a little while a few years ago, multiple cbc's, blood smear, diets, even STD/HIV testing. I don't remember the names of the few medications they had me try a few years ago, because they didn't do any good.
I didn't just see I've hemo. I was sent between 3...all in the city (which was 1 1/2 hours away from my home at that time). They all were baffled by my unique issue, because nothing was working to help. They never gave up though.
Eventually I moved away to another state...and I'm needing to get myself back on some sort of track.

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Unsure 4 years 8 months ago #63002

  • 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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Okay. Do you remember if you had any of these treatments?

1. Rituxan - 4 to 6 hour infusion given once a week for four weeks.
2. Promacta - daily pill (not a steroid, dose is adjusted based on platelet count).
3. N-Plate - weekly injection.
4. IVIG - long infusion that can be given over one day or a few days. It can cause a rise in counts but they usually drop after a few days or weeks.

There might be some things on the list that you didn't try.

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Unsure 4 years 8 months ago #63003

  • j.mudge.9690
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Promacta and IVIG both sound familiar. I can't guarantee that I've undergone/taken either of those, but they do ring a bell. The other two don't even sound remotely familiar to me.

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Unsure 4 years 8 months ago #63005

  • 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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Okay. If you have not tried the other two, you still have options and there is hope. I'd start with a new Hemo.

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Unsure 4 years 8 months ago #63009

  • momto3boys
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Promacta and IVIG both sound familiar. I can't guarantee that I've undergone/taken either of those, but they do ring a bell. The other two don't even sound remotely familiar to me.


It sounds great that there are several treatments you haven't tried! Definitely don't despair that "you've already tried everything and nothing worked," because that is not the case. Good news :) Once you have a new hematologist you should have some options about what you can do going forward. If you can get your records from your old office that will help you know for sure where you might want to start.

I think once you start taking control of things and get a decent doctor, you will feel better in taking positive action to manage your condition. There are lots of us on this forum who have had ITP for much longer than you and are living life to the fullest. Don't despair or feel like you are alone with your ITP! There are a lot more of us out there than you might think. Even if there isn't a support group in your area, there are lots of online communities for support as you go through treatment options.

Read through all of the treatment options that are discussed on the PDSA website and educate yourself about what things you might want to try. Education is your best weapon to not feel depressed and overwhelmed. Feel free to ask lots of questions, people are very helpful!

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