ITP: How Does it Feel? -PK Scott

Immune Thrombocytopenic Purpura (ITP)
-How does it feel to be told that you will likely live for the rest of your years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?
-How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age?
- How does it feel to be told that you need to change, stop, or modify everything in your current life because your greatest risk is having a brain hemorrhage?
- If that's not enough, also to be told that stress along with exposure to germs is going to be number factor in maintaining stable health.
– That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?
-As different treatments become available, we can weigh the risk factors & side effects. All of this just to discuss the possible changes in order to move forward with a new maintenance health plan.
*This is a compilation of ideas gathered from various writers over the years. I put them together to organize how I feel about MY Primary Chronic Genetic ITP.
Thank you for reading my post and as always forgive my typos, misspellings, & imperfections.
Wishing you and those you love much Love, Light, and Laughter along your Journey. Namaste

If I were told all those things, I'd think that the person telling me didn't know a whole lot about ITP. ITP doesn't affect the immune system's ability to fight off infections, and it doesn't necessarily go along with other autoimmune disorders. Etc..

Anon,
I could agree with your points on a surface level.

However ITP is an autoimmune disease therefore with having an autoimmune disease ones immune system is compromised. This in sense it means that ones body does not fight off infections in which it promotes health. In fact, your body or the white cells attack its platelets, and person diagnosed with ITP has a lower baseline making them more susceptible to infection, therefore affects the immunes systems at a greater degree to fight off infections.
Secondary ITP does go along with other autoimmune disorders, this is why when one is first diagnosed with ITP, they are screen for Lupus and such. Primary ITP does not go along with other autoimmune disorders. It can and has been classified as idiopathic or genetic.
We as a ITP community as learning as great deal about ITP every day. Thank you so much for you reply. I will take a look at how I worded my original post for further clarification. I wish you much love, light, and laughter or your ITP journey. Namaste.

When I was diagnosed, I wasn't told any of those things. My only goal was to manage ITP so that I could keep living my life and keep things normal. I did just that. I didn't stop or modify anything. As it turned out, I didn't have to live with ITP for the rest of my life. I struggled for 8 years and then went into remission. Some people do. I also didn't have Primary ITP as I'd thought I did. Just as ITP went into remission, I was diagnosed with Lupus. All prior tests had been negative. Apparently, ITP was the very first symptom. Primary ITP can change to Secondary ITP at any time.

I agree with Anon; ITP does not cause a compromised immune system. The treatments can though. My white cell count was always fine and within normal ranges and I did not get sick any more often than anyone else that I knew.

pshayK wrote: Immune Thrombocytopenic Purpura (ITP)
-How does it feel to be told that you will likely live for the rest of your years with a rare, mostly unpredictable and unknown autoimmune disorder that will affect your blood’s ability to clot and heal and your immune system’s basic ability to fight off infection?

That's a pretty depressing way of describing ITP. I've lived just about my entire life with ITP (diagnosed at age 8, still dealing with it at age 42) and would honestly say that it has been soooo much better than so many conditions I've seen in others. The reality of living with ITP for me is maybe a doctor's visit every few months, biweekly labs, and a daily pill (at the moment). There have been times when I've had more frequent labs or more frequent visits or bouts in the hospital, but honestly, that is just not that much time excluded from living my normal life. If I spent a lot of time just reflecting on ITP or entertaining constant thoughts about having a long-term, medical condition, then it would take more time out of my life. Thankfully, I can control my focus, my thoughts, and my outlook. If I focus on adjectives like "unknown," "unpredictable," and "rare," I feel like that is a fairly negative perspective. Why not focus on "treatable," "manageable," and "almost never fatal?"

Personally, I don't spend a lot of time worrying about my body's immune function and what my white cells might be doing right now. Despite even having undergone a splenectomy, I can honestly say I am rarely sick with much of anything. For me ITP doesn't mean my body can't fight off infection. I just make treatment decisions when I need to, follow up responsibly with my doctor, and live my life to the fullest. I've read some people talking online (not here) about having ITP as such a doom and gloom situation and I always just kinda scratch my head. Really? I'm just not seeing it from where I sit. And I'm not an easy, transitory acute case with higher end counts by any stretch of the imagination. Who knows, maybe it's easier for me to ignore it and to be a positive person in general because I have had it most of my life

pshayK wrote: -How does it feel to be told that there is little to no information about your disorder, that every case is different and unique, and will most likely eventually couple with a number of other autoimmune disorders as you age?
- How does it feel to be told that you need to change, stop, or modify everything in your current life because your greatest risk is having a brain hemorrhage?
- If that's not enough, also to be told that stress along with exposure to germs is going to be number factor in maintaining stable health.
– That there is no long term plan for the treatment of your disorder and all you can do is suppress your immune system and manage the side effects?
-As different treatments become available, we can weigh the risk factors & side effects. All of this just to discuss the possible changes in order to move forward with a new maintenance health plan.
*This is a compilation of ideas gathered from various writers over the years. I put them together to organize how I feel about MY Primary Chronic Genetic ITP.
Thank you for reading my post and as always forgive my typos, misspellings, & imperfections.
Wishing you and those you love much Love, Light, and Laughter along your Journey. Namaste

Again, I've thankfully never been told these things on my journey. I really never, ever had to "change, stop, or modify everything in [my] current life" because of ITP. As a child, I just swapped from soccer to swimming, and that was pretty much the only modification I ever made growing up with ITP. As an adult, I've had very few decisions that I feel were restricted by my condition. (Maybe I'd feel differently if I were really drawn to extreme sports!!) I just really don't think about it on a daily basis. Compared to what was available when I was diagnosed, I am frankly giddy with all of the articles, information, and support that is available for this condition today. I hope that people who are newly diagnosed or worried can gain perspective and hope from those who have managed the condition for longer. I find the wide variety of responses and management plans hopeful rather than depressing. There's a lot to try!

Just a few of my personal thoughts on having ITP. It is possible to be positive and have a lifelong medical condition

Sandi you and Anon are both correct ITP does not cause a compromised immune system. It does however affect (which means influencing action of...) your immune system’s basic ability to fight off infection. That's all and all ITPer's know that. But you and Anon are completely correct it does not Cause, I completely agree. Thank you for making that point clear. I would not want anyone to be confused.

Thank you so much for your reply. You have been living with ITP for the majority of your life. Your post made some excellent points about what you can and can not control. You also had some great insights that since you had have ITP the majority of your life it does give you a unique perspective. You have demonstrated in your post that you have been able to structure a highly functional life around ITP. That is great to read. I agree with that it is possible to have ITP and to be a positive person.

ITP does not hamper the body's ability to fight off infection. The treatments can cause that (immunosuppressants), but not ITP itself.

Agreed, Sandi!
I always say, "My immune system is extremely strong. It's just a little overzealous and confused."
I rarely get sick and when I do happen to come down with the bug going around the office, I have NEVER had it as bad as everyone else.

pshayK wrote: Sandi you and Anon are both correct ITP does not cause a compromised immune system. It does however affect (which means influencing action of...) your immune system’s basic ability to fight off infection. That's all and all ITPer's know that. But you and Anon are completely correct it does not Cause, I completely agree. Thank you for making that point clear. I would not want anyone to be confused.

I'd like to see some evidence, some papers from respected sources that says that people with ITP lack the ability to fight off infections. I've had ITP for a long time and never read or heard that before. I simply don't believe it.

anon wrote:

pshayK wrote: Sandi you and Anon are both correct ITP does not cause a compromised immune system. It does however affect (which means influencing action of...) your immune system’s basic ability to fight off infection. That's all and all ITPer's know that. But you and Anon are completely correct it does not Cause, I completely agree. Thank you for making that point clear. I would not want anyone to be confused.

I'd like to see some evidence, some papers from respected sources that says that people with ITP lack the ability to fight off infections. I've had ITP for a long time and never read or heard that before. I simply don't believe it.

Good luck to pshayK trying to find that evidence, though in this day and age, it's not hard to find someone willing to make incorrect claims in some way, shape, or form.

I know there are a large number of auto immune and suspected auto immune conditions, and I'm certainly no expert in any of them, but in general, they all stem from an over active immune system that has mistakenly identified the wrong cells as being foreign, for some reason, for example molecular mimicry. If anything, we might be able to fight off infection better than otherwise due to our over active immune system, though in my opinion, we should all be striving to regulate our immune system so that it's neither under or over active.

• ITP does not cause a compromised immune system.
• It does however affect (which means influencing action of...) your immune system’s basic ability to fight off infection.

These statements are in conflict. The very definition of a "compromised" immune system is the inability of a body to defend against illness. You're saying ITP does not compromise, but that it does cause an inability to fight infection. Those are the same things.

Count me as another with ITP who is very rarely sick and who doesn't accept your argument.

I've never heard this either, although I fully accept Sandi's argument that taking immune suppressants to treat ITP would lead to a compromised immune system. The immune system is immense and complex, and only a very small part of it is involved in ITP. I think the same is true of bleeding - ITP does destroy platelets but the body has other mechanisms to stop bleeding such as clotting factors.

I think my susceptibility to infections has been increased by taking steroids for the last 3 years not by having ITP.

Thank you all for your replies to my original post. You all have shared so much wonderful information about your unique ITP journey's and lives outside of ITP. I appreciate all of your feedback and responses. It has come to my attention that there are particular items about the original post that several individuals have concerns as well as disagree. I always appreciate differing points of view and a positive dialog. I believe that word choice plays an important factor in this post and I have take a deep look at this. I believe that the following sentence can use some revision.
...and will affect your immune system’s basic ability to fight off infection?
...and it may affect your immune system’s basic ability to fight off infection?

Thank you taking your time to read and reply to my original post. I have attached the following document in which information was gathered for the develop of the original post. This website was one of many that was given to the groups during the multitude of discussions that I attended during 2017 PDSA conference.

m.asheducationbook.hematologylibrary.org/content/2012/1/306.full

Wishing you all much love, light, and laughter on your ITP Journey. Namaste.

pshayK wrote: Thank you all for your replies to my original post. You all have shared so much wonderful information about your unique ITP journey's and lives outside of ITP. I appreciate all of your feedback and responses. It has come to my attention that there are particular items about the original post that several individuals have concerns as well as disagree. I always appreciate differing points of view and a positive dialog. I believe that word choice plays an important factor in this post and I have take a deep look at this. I believe that the following sentence can use some revision.
...and will affect your immune system’s basic ability to fight off infection?
...and it may affect your immune system’s basic ability to fight off infection?

Thank you taking your time to read and reply to my original post. I have attached the following document in which information was gathered for the develop of the original post. This website was one of many that was given to the groups during the multitude of discussions that I attended during 2017 PDSA conference.

m.asheducationbook.hematologylibrary.org/content/2012/1/306.full

Wishing you all much love, light, and laughter on your ITP Journey. Namaste.

Thanks for sharing that article, definitely an interesting one. I'd love for you to share in there where it talks about ITP potentially affecting the immune systems's basic ability to fight infection. I'm not seeing that in there (but I could surely be missing it since I'm still not Sandi and Rob level pro-status at reading some of the research, lol!). I saw some discussion of secondary ITP developing in individuals with certain primary infections (H. pylori, etc.), but not the other way around (i.e. people with ITP being prone to developing certain infections).

It talked a fair amount about immune dysregulation (which is probably pretty self-explanatory since we know our platelets are getting zapped by our own over eager immune systems), but that also doesn't mean an increased susceptibility to infection. Just always looking to learn more, so thanks for sharing!


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Thanks, but I'm hardly level pro-status! I saw exactly what you saw, M23. I couldn't have phrased it any better!