Just diagnosed with ITP. I'm 44 and confused.

Hi there

Poor you, just at the beginning of it. Well am 43 and have had Idiopathic Thrombocytopenia Purpula on and off since I was 25 years old. Sadly I cannot answer about Haemo's for you because am English and we have a very different system of one am thankful for as I don't have to worry about insurances etc:-} Plus I have a very good relationship with my Haematology department. I haven't had low platelets all that time :-} I will add.

All I can say is that at the moment you will feel your life is upside down and that is natural. It will feel like you are getting a crash course in human biology. Each case is so unique so it be hard to tell you what to expect next.

Main thing is I hope you are not into contact sports? Write a diary by all means as it will help you. My consultant was interested in if I had done anything different that week and whether I had an infection because he so wanted it to be the immune version (that you all seem to have on here) to give him an explanation I guess. But resigned that it was idiopathic version and learned that in a short time I would respond to Steroids and a 5 day course of IVIG. Foods, I haven't given anything up because nothing stood out to me to be a contributing factor - ie, have I done anything different question?


I haven't changed anything about my lifestyle due to ITP. just watch for the signs and ring when they do appear. In the past around every 18 month or so. Though have had an 8 year break and this year they dropped again, but not as low and rose on their own. Which it could happen from time to time just that don't normally find out?


Anyways hang around on here for a time and you will soon gain comfort in understanding more about it and read the experiences of others, bearing in mind each case is unique to us. ie Just because I have lost my spleen to ITP don't mean to say you will. There are plenty on here who haven't.

Take care and will be thinking about you

Thanks Rhiannon,

This is a weird disease and no thank goodness I do no contact sports. I'm just clumsy...LOL.
I will be watching this think like a hawk and staying on it and not let those doctors get lazy about treatment. I wonder I guess what my goal for my platelets to be: 100+ etc. When should I stop worrying so much? Should I keep pushing for them to try and figure out what is trying to kill my platelets if there is another disease present? I'm also afraid that because I'm due to start my menstrual cycle within the next few days what should I do then? Pretty scary because I don't want to hemorrage and die. I've got great friends and family that are watching over me so I feel blessed. I apprecate your information and I'm sorry you are going through this too. I really want to drink a few glasses of wine over the weekend or even beer but there are articles saying I can drink anything. That sucks....LOL Other than my little whiney ness about what I can't do...I'll be staying positive and watching these discussion boards. I'm hoping the steroids work for now and I also hope I don't lose my spleen. Keep in touch it's much appreciated.
Cheers!!--Colleen in PA-USA

Hello Colleen
Welcome to ITP world! I am 46 and just diagnosed in February of this year. I went to my Gyn. because of heavy periods and just mentioned to him that I bruise easily so he did a CBC and called me later in the day and said.....You have ITP and your doctor will probably want to hospitalize you. :ohmy: was my reaction! My count was 20 so they just started me on Prednisone. It did nothing at all for my counts. I even went as low as 1. Only hospitalized once because the ER doc thought 4 was to low! I never had bleeding issues, only bruising. I'm thankful for that! I sounds like the steriod is working for you. I pray it keeps it up! I had a BMA with a count of 7. If the doc is good there shouldn't be any problems, if they even decide to do it. Not everyone with ITP gets one. Can't help you with doctor advice as I live in Ohio. Read up all that you can on this site. I've been a member since February and am still learning stuff! As for a "goal", most are content with anything over 30. That is considered "safe" for the most part. You shouldn't bother pushing the docs to figure out what's trying to kill you platelets, there is no known reason. ITP doesn't have to rule your life. It surely is going to be a part of, but it doesn't have to be all of it!
Looking forward to hearing more from you.

welcome aboard. Try to keep your counts above 20k and you will have a normal life as long as you dont have any active bleeding. The saying in ITP is that "You treat the symptoms and not the count" is a popular one. This means it doesnt matter if you have low counts, it matters more if you have active bleeding. e.g. nose bleeds, gumbleeding, blood in urine or stool, etc.

Prednisone can be the cause for your emotional state right now so try to think rationally and logically. This site has been a very helpful place for all our anxious moments. Stay here and learn more.

Oh, and what's more devastating than having ITP is having a little child with itp.

Stay strong, youre not alone.

Hi, and welcome to the party. Take a deep breath. I know this is scary. But, know that, even with extremely low counts, very, very few people die from ITP. The odds are hugely in your favor, but it is going to take some time and you are going to be frustrated. Be prepared for that.

I started to write a longer response, but decided to go find a post I wrote in response to a similar post from someone about 3 months ago -- it's easier to cut and paste than re-type everything. So, here it is. Sorry about the length. I did add a new paragraph on spleen removal.

++++++++++++++++


OK this will take me forever to type what I want to say, so get some popcorn.

1. Freak out. It's ok. This diagnosis is a shock. Confusion, lots of questions, a seeming inability to find any firm answers to anything, ever doctor has a different opinion, people shoving all sorts of needles into you, drugs you can hardly pronounce and have never heard of. And, the worst is the fear you see in the eyes of your family and your children. You should freak out a bit -- it's called being human. This thing called ITP still scares me at times, and I've had 43 years to wrap my head around it.

2. But, don't freak out too much. If you are like most of us, the first week is awful. But it starts to get better. The key is education. That's the best thing you can do for yourself. Read everything. Begin to understand that this is a journey -- whether your journey will last 6 weeks or 6 months or 60 years, no one knows. You start your journey alone, afraid, with a doctor's finger pointing to a little number on a lab report that is at the same time both meaningless and terrorizing.

3. Use the education to build up the tools you will need for your journey. Very soon, you will learn that the vast, vast majority of ITP'ers live long and happy lives, with ITP being an inconvenience. You will learn this is not a death sentence. Far from it. Strap these tools on as you walk. You will need them. Write them down. I did.

4. Your next job is to find a drug that "works" for you. By "works," I don't mean that cures you. There are no cures out there, sorry. You may go into remission, you may stop your ITP journey after only a few steps. But, get out of the "headache" mindset -- you have a headache, you take a pill, the headache goes away. Sorry. ITP isn't like that. Instead, a treatment that "works" will get your counts up above 20 or 30, in a pinch. There are many, many options. No one can predict what will "work" for you and what won't. The most common are IVIG, steroids (various kinds), Win Rho, Rituxan, N-Plate and Promacta. You may have to work through every one of these before you find your magic pill. The vast majority of ITP'ers find something on that list that "works." If not, there is an entire other list you can try, but focus on those common meds first. Which order -- that's up to you, in discussions with your doctor and family. Your ITP may just go into remission, but don't let yourself think that your life is ruined if it doesn't. Don't build your happiness around that false hope.

4a. Sooner or later, someone will mention splenectomy to you. Don't freak out. Yes, it is surgery; it can be done in either of two ways, "open" which means you get a long, nice scar, and "scoped" with means they use a scope and make three very small incisions. Which method they use depends on your count, your surgeon and other factors. The most important thing to understand about a splenectomy is that it is just another treatment, it is not a cure. It was the standard of care for ITP for many, many years, because it has a pretty good success rate -- around 60% of the time, it "works," with, again, "works" meaning it will raise your counts, not cure you. Some people get long -- even lifelong -- remissions out of the surgery. Others get nothing except the scars. There is pretty good evidence that suggests that past about age 40, the "success" rate begins to decline.

You will have to decide for yourself if you want to try this treatment. Many ITP'ers, probably most, decide to try the drugs first, and save splenectomy for when/if you really need it. But, there is that age thing to consider, too, if you wait too long.

5. Another good tool you will pick up as you walk this path is to learn the truth about counts: you will drive yourself crazy if you follow them too closely. I am not suggesting you ignore or skip counts. Counts are an important piece of the puzzle, but they are only one piece. Don't fixate on them too much. Learn the truth that there really isn't much difference between a count of 25 and 30, or 75 and 100, or 150 and 200. Learn that, for most of us, a count over 30, or maybe even 20, is just fine. Everyone is different, but, for me, I consider above 20 "normal" and I really don't limit my activities at all. Between 10 and 20, I go see my doc and we chat about treatments. If you have your "go to" treatment (see #4 above), you use it. If not, you talk about what new treatments are out there, which you will know because you have educated yourself (see #3 above).

6. You will find the journey is almost impossible without another tool: patience. Be a patient patient. Some treatments can work quickly (such as IVIG), but many (most?) take some time. Get your head around the fact that your journey is a nice walk in the woods, not a sprint on the track. Things that happen quickly with ITP usually aren't good. The good takes time.

7. Have compassion for your family and friends. They won't understand, at least at first. Don't deny the seriousness of your condition, but use your education (see #3 above) to calm their fears. It's worse for them, most of the time. Remember how much easier it is for you to deal with ITP, because you have educated yourself. That's part of your job now -- ease their path as you walk.

8. Find a doctor who communicates. Some do, some don't. If yours doesn't, dump him/her and find someone new.

9. Pay attention to your insurance. No matter what your financial situation, you need to start paying more attention to your insurance – both health and life. On health insurance, study your coverages. Many ITP treatments are extremely expensive. All of that fine print and boilerplate that you used to ignore – well, it’s time to start paying attention. Many insurance companies will designate ITP as a “pre-existing condition” or, depending on your situation, will refuse outright to insure you.

10. Ask for help when you need it. Don't be shy. I would walk over hot coals for my friends here on the ITP forum because they have helped me so much. Send Sandi your phone number. There is nothing better than a phone call from someone who has been there.

11. Most importantly, remember and cherish your humanity. Love your life and live it with passion and gusto. Hold the gifts ITP brings -- relish them, cherish them, consume them. What? ITP brings gifts? Absolutely. A love of life. A better appreciation of your family and friends, and your health. Squeeze your kid just a little tighter. Give your spouse that extra kiss that "before" you would have skipped. ITP will be with you on the journey, however long it lasts, reminding you that life is wonderful and precious. Don't let the fear make you forget that. I had some surgery recently. The last thing I remember, before they put me out, was laying on a bed, they had me on my side for some reason, and I was having this slow discussion about life and death and charity with this Catholic priest I have gotten to know over the past 3 years (he is the hospital chaplain; I am not a religious person). One of the docs was standing there and obviously gave me something, and the next thing I knew it was 6 days later. So, my first thought on waking up from the operation wasn't "wow I'm glad I woke up," but instead was "crap, I wanted to finish having that conversation. Let's go back."

I digress. The operation went well. Back to my friend, the priest. Knowing of my love for poetry, the other day he stopped by my hospital room and left me a snippet from one of my favorites:

My former thoughts returned: the fear that kills;
And hope that is unwilling to be fed;
Cold, pain, and labour, and all fleshly ills;
And mighty Poets in their misery dead.
--Perplexed, and longing to be comforted,
My question eagerly did I renew,
"How is it that you live, and what is it you do?"

This is the question I cannot answer, but it haunts me. Why me? Why any of us? Why us and not someone else?

Don't fall into that dangerous trap. It will make everything worse. Instead, focus on "why me -- why do I have so much to live for?" For me, the Spock part of my brain tells me this is just random luck, really just entropy that was set in motion billions of years ago, but that won't cut it. Such a profound experience requires real meaning. I woke up. I will forever be unable to express, to anyone, how profound that common, every day event was.

I know this -- and I hope you will forgive me for drolling on about this stuff, I just cannot help it -- Life is about helping others. ITP has taught me that. I have been to the edge, I have seen over the edge, and I promise that when you get there (which I hope is a very long time away), your thoughts will not focus on wishing you had made more money or gotten that promotion or anything having to do with material possessions. Instead, like me, you will pray/hope for one more weekend with your family and friends. You will regret those times when you could have easily, without any real cost to yourself, helped someone but did not, because you were in a rush to get home to watch Survivor or whatever.

This is the final lesson of your journey with ITP -- life is about building wonderful, thick, loving, meaningful relationships and about helping others. That's really all there is to it. Don't let ITP take that out of you. Find someone who needs help, and help them. It'll help your ITP, every part of your ITP, I promise.

I can't type anymore. Best wishes.

Hi Colleen, I'm so glad you found this site to help you with your ITP diagnosis. My husband is new to ITP too, just being diagnosed in May 2010, so I understand (& remember vividly) your fears about this. Listen to what everyone is telling you, Gort was my lifesaver in my "early" days. The longer term ITP'rs told me early on to not worry about the counts, and to treat the symptoms. That proves to be so true with my husband and certainly leads to a more normal life. Treatments that work for many, don't work for others. Doctors are puzzled when you don't respond to what the book says, but together your medical team and you and your family will come up with a treatment that will help. There might be plenty of ups and downs (platelet counts) in between, but the diagnosis of ITP will become less of a center of your life, and more of something to watch. There also doesn't seem to be anything you can personally do in your life style to dramatically improve your platelets. So if you want to enjoy a glass of wine, I'm not sure one glass will matter in the overall picture and if it helps you in keeping happy in living life, then that's important too! I'm glad you're out of the hospital, it's not always a fun place to be lying waiting for your platelets to rise. Keep in touch with PDSA, there's always someone to answer questions.

He Coleen, sorry you need us but glad you found us. This is an amazing place with amazingly ITP knowledgeable people. Post often and don't think any question is too trivial or foolish. We're now embrace you as FAMILY and want to give you a place to rage, share your fears and concerns and grow in your knowledge regarding ITP. Great advise has already been shared below and we know it's easier said than done...but you will hopefully move forward with greater peace and confidence very soon. The first weeks are the hardest as you absorb what ITP is and isn't - it isn't a death sentence that it often seems as first diagnosis.

Thanks to Everyone who has answered! This has been a real blow to the the system. This morning I am going outside for a walk with my dog and get some much needed fresh air.

My next big question: I need a good doctor on the East Cost of the US. Where is a good doctor willing to work with me? I can give the Hematologist from this small town and chance and see if he will be good but I'm not feeling the cooperation. He's minimalizing this thing and I want him to get serious. Maybe I'm too serious and I need to lighten up...(Roid Raging and all) I'm sure when the Dexamethosone is tapered off I will be more reasonable to deal with and today is my last 40 mg day...then tapering begins tomorrow. I'm sure the Zanax for the steroid craziness and the Vicodin for the migraines will give me some brief relief but it really doesn't.

So off on a walk in the countryside here on the Gettysburg Battlefield with my camera. Maybe I'll find a new perspective this morning.

:woohoo: Colleen b]

Colleen:

Welcome! From what I can see, I don't think your doctor is minimalizing anything. Why do you feel that way? He seems to be doing the right thing. It's better to have a doctor who is calm rather than a doctor who panics and throws too many treatments at you. Steroids are a very normal starting place. They will make you crazy and are difficult to tolerate, but we've all been there. The next few days after stopping Dex may be difficult - be prepared to feel like you've been hit by a train.

Protocol states that a bone marrow biopsy is not necessary to diagnose ITP, so don't feel that you have to rush into that. It can give you peace of mind, but you don't have to have one to know that this is just ITP.

Most of the time, there are no underlying illnesses. Occasionally, there may be other autoimmune disorders that have ITP as a symptom; but that may not show up for years. Don't spend your time worrying about it. It will just be time wasted.

Everyone is right - a count over 20 is considered safe and life can carry on as normal. The best thing to do is try your best to keep things normal....just do your normal things. ITP is not a death sentence and bumping into something will not kill you - you'll get a bruise.

There isn't much that diet changes can do, and don't fall prey to the supplements until you've been at this for a while and you know what does and does not works as far as treatments. Some supplements can do more harm than good and none of them are proven to work.

Steve (Gort) had the best advice. He's right about all of it. There is no cure for ITP but there can be long remissions. I am in a 6 year remission right now, prior to that, I struggled for 7 years. There is always hope for remission, even when you least expect it.

Hey Colleen...I don't have much more advice except I (ITP for 4 years) focus much on whole foods/ natural to feed myself the best I can. If I can only produce not even 25% of the plateletts I should, I can at least make sure my blood is the healthiest diet can make it. Plus emotionally I feel better if I take better care of my diet. (exercise too

Also...I live in the Lancaste area. I see a hemotoligist in the "Lancaster Co Hemotoligist Group - Dr. Judson". He is not a specific ITP doctor but he is wonderful and has monitored me since Feb. when another Doc. really screwed me up. He is cautions, caring, and willing to thoroughly check everything out. He spent a lot of time w/ me in the beginning helping us to understand everything and the options to medically treat ITP. Totally unlike the Doc. at the cancer cntr I had been seeing for 1 and 1/2 years. Hope that info is helpful. Call this PDSA org. too for names! This org. so helpful and the staff will counsel you and give you much understanding. Hang tough! You will feel better sometime soon!

From All I have been through with ipt , your information was the best I have ever read and the complete and honest truth thank you!!!!!!!!

Hi Colleen,

I too an new to this group, but I am not new to ITP. At some point I will post my story, but for now I want to let you know that I am in the central PA area and see Dr. Al-Mondhiry at the Cancer Institute at the Hershey Medical Center. I have been working with him for about a year, and he not the type of doctor to freak out about low numbers or persistently low platelets. There are other doctors in that group, but I do not know much about them. I believe my dr. is one of the senior doctors in the group and is obviously very well respected by his peers.

Please let me know if you have any questions about the disease or the Cancer Institute. I go tomorrow for a follow-up appt as my numbers have recently been in 2000 range...even after IVIG 3 weeks ago. Decadron does not seem to be working, but we are talking about other treatment options and I am hopeful that my body will respond. It usually does...sometimes only when it decides to though!

Bindy

Much Thanks to everyone that responded to me over the last 11 days....LOL! Okay-so I'm on this week's downslope of the Dexamethatron Steroids which are helping me right now. I'm wiped out and exhausted the last 3 days, often dizzy and anxious from the meds. My platelet levels are up to 87. Found a wonderful doctor who has helped me to sort through the last 3 years worth of labwork that my original doc had overlooked. Discovered that my Thyroid was effected as well as the platelets and the course for now are the steroids. Having weekly blood tests, more appointments next week then hopefully back to work the following week to get on with life as I know it. Got on a good diet plan, dropped 21 lbs, staying positive. Evenings are hard for feeling down as I never thought of myself as able to get really depressed but it must be these crazy steroids. I do find it hard to calm my thoughts and feelings. I'm more opinionated at home and have been angry with my husband's way of dealing with my situation and his own personal health issues that he has never dealt with that were festering over the last 7 years.

Bottom line to me: It's like I'm on this thing...why is changing your life to save it such a hard decision for any individual. I want to live, I want to conquer. Right? So I've made my decision on day one of the diagnosis. It will get bad maybe/maybe not- but so what. Life isn't perfect and I've not taken care of my health over the years anyway...so now is a perfect time for a change. I'm getting good support and I thank everyone for keeping it real. I don't want to Blue Skyed and get complacent. This is serious stuff and I'm keeping focused. Once I think I'm safe and okay, I will go back to my lazy ways of eating and not taking care of myself and worrying more about everyone and everything else.

So again thanks...and more gets revealed every week. Colleen

Well everyone lot's has happened since they diagnosed me with ITP. I've had a bone marrow biopsy and it came out negative for cancer. They strong steroids had an absess grow under my arm that they found in a mammagram...it was negative. They tested me for everything they could and found nothing but ITP. Last week I spend the hospital for constant bleeding from my colon and found a severely ulcerative and so they took me off the dex and gave me alot of antibiotics. So now I'm not bleeding anymore but my platelets dropped from 97 to 32 so they put me back on 40 mgs of dex for 4 days and they start the Rituxan treatment on Tuesday I really hope this works. Everyone keep your fingers crossed and say a little prayer. I hope this puts this in remission because I'm not about to lose my spleen.

I hope every thing works out for you Coleen

Things seem to be working out.....Platelets at 100 right before the 2nd Rituxan treatment. The Treatments don't allow me to sleep well for days, make me nauseus and a little weak. I'll report and let everyone knows if everything goes well. There's so few of us and this disease seems to lack credibility in the hematology or oncology world. Where's the patient education and advocacy?

Glad everything is looking up Colleen. A little peace of mind huh? I'm not sure I totally understand your comment about ITP lacking credibility in the hematology/oncology world. Can you be more specific? Not sure about the patient education, other than this site! and the advocacy.....lack of education/interest would explain that!

Rule Number One - self-advocacy.