5 Years "Remission"...seems to be coming to an end

Hey Everyone,
So, I would like to say, "It's good to be back," but if I said that, I would be lying to you all. Some of you may remember me. I was the paranoid, sad and confused 22 year old who constantly trolled this site looking for reassurance and other ITP friends five years ago. Lucky for me, I got both! Which is why I am back now.

Five years ago, I was diagnosed with ITP after I had a terrible 3 hour nosebleed. After being rushed to the hospital in an ambulance from an urgent care center, one bone marrow biopsy, one pathologist, 2 doctors, and many tears later, I was introduced to what we all know as the biggest pain in the ass, ITP. My counts were at 17. When I was 22, I found this site and instantly found the comfort I needed. One being the the reassurance to know that I wasn't dying. Two being meeting others who had been there, done that, and understood my fear and frustrations.

After my diagnosis, I saw rises on prednisone and my counts went back to normal. However, as we all see too much, after being weaned off of them, my numbers dropped back down to the 30 range. After refusing to do a splenectomy (as a kindergarten teacher, it didn't seem like the best option), I began 4 rounds or Rituxan treatment. After 4 sessions and a lot of praying, my counts began to rise and rise and rise. I finally stabilized in the 250 range. Eventually, my daily appointments turned to weekly appointments, then bi-weekly, then 3 month check-ups, and then the coveted 6 month check in to make sure things were still running smoothly. I had five...FIVE wonderful years of this.

Fast forward to five years later:

June 6th, I had my 6 month check up and was a little concerned when my counts had dropped from 220 to 152. My hema assured me that this was just a little blip and that since I was still considered in the "normal range" (I hate that terminology, don't you?), I shouldn't worry. To be cautious, she set up an appt. with me a month later. I went to the hema today and was shocked to hear my counts have dropped more--down to 103. Being concerned, I am scheduled to return in a week to find out what is going on. I haven't had counts this low in close to 5 years.

My heart is aching. I can't stop crying, and I remembered this site and how I could turn to others who know all to well what I am going through. Now I'm 27, and apparently, not much more mature than my 22 year old self (seeing as how I called my mom and cried all the way home!). Those demons are lurking back in my head, the paranoia is setting back in and I'm exhuasting myself with "what-if" scenarios. What if they continue to drop? Will I have to do another BMB? (God, please no). Will I need to do another round of Rituxan? What about pred dread? No! And the worst: What if it is something much more serious this time? I have full trust and respect in my doctor. She is amazing and has reassured me over and over about my condition, but it's different when you're on the other side of the needle.

I remember this site. And I am kicking myself for once thinking, "I don't need to go on there anymore. I am fine. I am in remission." I apologize for this attitude that my younger self had. I feel as though I have been kicked in the stomach. I feel alone and I'm scared. I have a wonderful family and husband who (I'm sure now) will treat me with kid gloves like they did in the past. It was finally wearing off! I wasn't the "sickly one."

I try to reassure myself the positives:
1.) My number is 103. Some of you would kill for those numbers and I apologize if I sound greedy.
2.) I am a teacher and in the prime of summertime. At least I can deal with this without having to go to work tomorrow! Silver lining, I guess
3.) I went into remission from Rituxan before...could it work again? Another 5 years?
4.) I am lucky to have an amazing support system here.
5.) Maybe my positive attitude will pull me through?

But, that is a facade because really, all I want to do is cry and scream and be angry that this idiotic "thing" seems to be back after I was so blindly convinced that I was through that dark part of my life. I feel alone. I'm not happy, even though it's kind of ironic, I was walking on air this morning, convinced that my numbers had risen. Then, like an atomic bomb I hear one number and it changes everything. Well, one positive is that my eyes can't possibly generate any more tears!

I guess, I just needed some place to vent, and like an old friend, I knew the PDSA website was a good start. I guess I am not looking for any answers from anyone really, maybe just some nice words? Similar stories? A cyber shoulder to cry on?

If anyone remembers me from five years ago, I would love to hear from you. I remember a very nice and ITP educated poster, Sandi/Sandy, who would frequently respond to me. Are you still here? DeeDee, I remember you, as well and I read about your relapse. Seems like we will be going through this together. Anyone else who can relate in any way, I appreciate all responses.

I think I'll go watch a movie now. Popcorn always makes me feel better. :0)

~Natalie

Well hello, Natalie! Sorry you are back.

Let me say first that of course it's sad to think about having to go through this all over again. Of course you are angry and disappointed and scared. That's normal.

But take a look at what you learned the last time. You learned that you're not dying, that you have a treatment that you responded to, that you had a good, long remission, that you are not alone, etc. All of that still applies (or can apply).

I see that your counts do seem to be dropping. That could stop now and they could go back up, or they could keep dropping. The good thing is that you are aware of it and can be proactive before it gets to the really low numbers. No three hour nose bleed, no ambulance ride, no panic at the hospital. Things will be much calmer and you can think things through. You're a pro now.

You go back in a week to 'find out what's going on'? Did you find out what was going on the first time? Chances are, it's nothing different. Bone marrow biopsies are not really necessary for ITP unless the person is over 60, is considering splenectomy or does not respond to treatments. If it is suggested, you have the right to decline. Usually, just looking at the blood smear can tell a doctor that it's ITP. If you feel healthy otherwise, chances are it's just ITP.

Rituxan can work for you again and you can have another long remission. No one knows for sure what will happen, but it's entirely possible. So if that is the route you plan to go, and you've done it before, what is there to be so upset about? You know what to expect and there is a lot of hope that normal life will return again soon. For now, it's just a pain in the butt.

This very topic was just discussed in the Women's Section titled Paranoia. Read that and maybe it will help.

Hi Natalie,

Sorry you are back.... But now you know a lot more and you know you will be able to deal with whatever comes much better. Your counts are fine now and they could stay that way. If they dont, many people have gotten longer remissions the second time around with rituxan.

You have some good positives going for you. So, try not to worry and enjoy your summer!

Dru

Hi Natalie,

I'm sorry that you are back. I am a 28 year old special education teacher diagnosed last December. This sight has been a life saver for me so hopefully it will be great for you this 2nd time around as well! I am with you on the whole not wanting your spleen out because of all the kiddo germs as well. Maybe your counts will stay up or maybe rituxan will work for you again. Welcome back!

Valerie

Sandi!
It's you! Did you see where I mentioned you in the post? Phew! I was hoping you would see my post. Do you happen to remember me? If you don't, I was highly paranoid and had major issues with my initial diagnosis. You are so kind to respond to me. It really means a lot and I can still hear your kind words from five years ago. You really made me feel better then and you have also made me feel better now. Thank you so much. I am sure I will be on here often and I am going to update everyone with my progress. Thanks for being the voice of reason. I think I can relax a little more now. I really do appreciate it.

Valerie and Dru,
Thank you so much for your nice words. It is so nice to talk to people who understand what I'm going through. You will see through my many posts that I have constant paranoia and I am constantly worried about my health and my condition. It pretty much consumes me. It was nice to "have time off" for five years and I am very thankful for that. Hopefully, I can get through this and with your nice comments, it sure does make things a little easier!

Valerie,
I am so sorry for your diagnosis. When I was first diagnosed, my hema discussed removing my spleen, but knowing I was going to be around germs, I didn't think it was the best route of treatment. I love teaching too much. Since I responded to the Rituxan, I am hoping that it will be the route I take if needed this time, as well. We should share some teaching stories when we're feeling down....I'm sure we both have lots of funny ones to lift our spirits!

Natalie, I am a big worrier too so I know how you feel. I have gotten somewhat better over the years but am still anxious especially on dr appt. days. I developed Itp in 2005 and had a 4 1/2 year remission from rituxan the first time. the second round I had an 18 month remission.

I work in a school too, not a teacher but an occupational therapist. I have the summer off but am having to spend some of it at the hema doc for hemolytic anemia, my platelets are okay right now. I might be back to rituxan soon for the anemia. I would like to get off of the predniisone I'm on.

Dru

Natalie,
I've been in remission from Rituxan for over 4 years. Over that time my counts average a bit over 200. At least twice they have dropped to 100 and gone back up. The drops correspond to viruses and also to prolonged gut problems.

With counts every six months you may have just missed some normal fluctuation. My point is, your counts could still go back up.

Also, I'm on my second remission from Rituxan. The first lasted 9 months. I got down to 40 and treated again and now it is over 4 years.
Erica

Erica,
Thank you so much for your post. It gives me hope! I am like you...my counts always hovered in the low to mid 200s. After getting my Rituxan treatments, they rose up and up, almost reaching 300 and then finally stabilized around 250. They have fluctuated in the past, but my lowest before this past 6th month checkup was 170. And I started freaking out about that! My next appt. proved that my worry was useless because they had risen back to 230. However, it really concerns me how, in one month, they dropped from 152 to 103. That is quite a hefty drop.

My doc is so sweet and never wants me to worry. Her motto is, "Let me worry about it, not you. You live your life." It took all my inner strength to hold back my tears when she said (with a concerned look), "Yeah, they are down to 103 today. They seem to be dropping. Let's have you back in a week to check things out. Just relax and don't worry." Yeah...right. I woke up all through the night checking for bleeding and thinking to myself crazy things like, "Oh my God, what if I had waited 3 months for my next check up when they were at 152? They could have been at 0 if they averaged a 50 platelet drop each month!" See, this is what I do to myself. I worry constantly, work myself into a tizzy and quite possibly make myself sick over it. Which only perpetuates things.

My hema looked at me sternly and said, "Now you're SURE you haven't had ANY sickness or virus?" I honestly haven't. The only things I have had were maybe a slight cold (which she was alerted about) and a terrible sore throat that lasted about 2 weeks (which I visited her about and she said was allergies). However, when I read your post, I am now interested in what you call "prolonged gut problems." What exactly does this mean? Over the summer, I have noticed that my stomach has become much more finicky in that I am basically getting an upset stomach after almost everything I eat. I usually need to go right home after finishing a meal and sometimes barely make it to the restaurant's bathroom! Talk about embarassing! I have had a few stomach issues in the past, but nothing that I thought would warrant concern. The weekend before this past check-up, I got a bad bout of food poisoning. That was NOT pretty! When I got in the car yesterday, I kicked myself for not remembering this. Do you think this could have had something to do with my drop? Do stomach issues sometimes affect platelet counts? I have never heard of this before, but am interested now. I keep thinking to myself...what is different? What have I done differently? Aside to switching to generic birth control (Junel FE--which my hema said shouldn't make a difference), I can't think of anything. I guess I am in denial about the truth....I have ITP, I need to deal with it and stop making excuses. But, it's just so sad and so hard to do.

Thanks for your post!
Natalie

Natalie:

Food poisoning could definitely have an impact on counts. Any illness can. It's possible that your counts will rebound or could stay in a safe range for a while. Counts do not have to be normal, just safe (over 30k).

People can develop sensitivities to foods at any time in their lives. Some people have sensitivities to gluten, some to fruit...any number of things. Many times, these things do not show up on tests. For example, you may not have Celiacs (allergy to gluten), but you could have a sensitivity to it. The only way to know is by elimination. These types of sensitivities can have an affect on the immune system.

Try to relax about your counts falling farther. Low counts do not = death and are not even a medical emergency unless there is serious bleeding. If your counts drop lower, you'll know and you'll deal with it. You're going to be fine.

Thank you, Sandi. You've always had a knack for making me feel better. So glad I found you (or you found me) after all this time! I really appreciate your feedback.

All those gut problems you report would for sure drop my platelets. The way I think of it, and Dr. Lieberman at conference confirmed this certainly could be the case for some people, my intestines are inflamed (for whatever reason) for a prolonged period of time and my body reacts with an over-stimulated immune response that in my case includes eating platelets. When I got my gut calmed down (and you need to figure out what is wrong, lots of different possibilities) my counts stayed up. When I have a relapse, my counts drop.

I finally figured out I have fructose malabsorption. When I changed my diet, a lot, I got better.
Erica

I learn something new everyday! I am excited to go to the pdsa conference next week and learn all I can!

Natalie,
I have lots of funny ones to share. For example one time this kid said Ms.D, my mom did something really bad. ( in my head I'm thinking oh no I'm going to have to call child services) then he says she snuck in snacks in her purse when we went to the movies.

Hi Natalie,

You know that feeling when you first came to the PDSA site. I'm not alone they understand finally! Well been there done that. When you come back here it is like reuniting with old friends.

I was in remission for 6 years thanks to Rituxan. I am not back to the roller coaster ride of ITP.


I am hoping this is just a dip for you and the numbers won't drop anymore.

HAHAHA! How sweet and cute! I teach kindergarten so I hear all kinds of stuff every single day! One of the funniest ones I encountered: I work at a very high ESOL populated school. My first year teaching, I asked one of my Hispanic students to use the work "fork" in a sentence. We were studying -r controlled vowels. My mouth dropped open when he said (and I quote): My mom and dad fork all night. Being mature (not) I DIED laughing and couldn't compose myself. It was terrible looking back b/c I embarassed him horribly and he actually got teary eyed. Another student actually said, "Ms. Lanter, it isn't nice to laugh at people." I got it together and asked this sweet little child if he even knew what a fork was. He didn't...obviously. I know I sound terrible, but I will NEVER forget that and I still laugh my butt off everytime I think about it. Poor kid.

Winnifred,
Thanks for your nice response! I hope your remission lasts even longer!

Also, I am now intrigued about these gut problems. I will bring it up next week when I go to get my counts checked again...I am dreading it already! Thanks guys!

Don't be surprised if you don't get very far with the doctors on the digestion issues. Most of us have had to work on that ourselves. My daughter had that problem and had every test they could think of. Everything came out fine so she was on her own. She found that eliminating fats worked best for her.

I've been tested for Celiacs and did not have the antibodies. I have found that going gluten-free has made a difference in my energy and inflammation levels. I had to do that also on my own. I have also stopped eating nightshades and that has also helped.

For me, the one thing I knew for sure is that apple juice was a nightmare. Once you can identify one food for sure, that's a thread you can follow. When I found 'fructose malabsorption' it was my answer. There was a test and I was positive, and the diet is what works for me.

You know the fork is how we would swear at each other at family dinners!

Just hold the fork up in front of who you want to tell off and say *****You*****

Hi Natalie!

I have been through what you very aptly wrote. Don't sweat it. You know the program and the treatments. You have been through it. No need to put yourself through the drama again. We all have a very high chance of getting hurt every day in driving, walking, working, or whatever it is we all do, but we survive and go on and do it all again the next day. Just do that my friend! When you need to vent, vent! Yup! ITP sucks, but it is ours to deal with individually and as a group or community. We are all here for each other. I for one will never surrender, never give up. As near as I can determine, old age is a far more critical issue! LOL I have that one too! (Sandi and Winnifred no additional comments please ) Smile and go forward. You live in one of my favorite cities in the world! What could be better except maybe Savanna? Take care and enjoy the day!

Jeffrey

Jeffrey,

You are always so inspirational! Thank you for all of your words of wisdom! You really should be the motivational speaker at an itp conference some day!

Jeffrey,
Yes, I agree with what Valerie said about you. When I get discouraged I think of you and your positive attitude, all the exercise you do. I just went back to my exercise program, a tiny fraction of what you do, but it is helpful! Thanks for your inspiration.

Okay, Jeffrey gets to be the PDSA mascot! We've never had one before.

Jeffrey gets my vote !!! Mascot - Mentor - Champion !!!

Sandi should be voted "Professor" with all her knowledge and sound advice I could think of no one better!!

Cindy Ann

I agree we will name sandi as professor!

Yes Sandi for Professor! I kind of viewed myself as our Brad Pitt look a like! :laugh: Thank you all so very much. I just refuse to lose one day of my life to negativity. I am probably just too dumb to worry when I should! LOL

Hallie Berry is getting married, now I am down....

Aww I'm sorry that she is off the market!

Sir Jeffery the PDSA mascot! Coolies! You need to start a section on exercise and teaching other how to run. I've finally quite smoking so my lung capacity should be a little better!

Jeffrey,
What a kind and sincere response! I love your optimism! It is contagious! I go back tomorrow for my counts to see if they are continually dropping. My fingers are crossed, but I am prepared to take it as it is! I will definitely think about your kind post. It was very uplifting! You are so right, we CAN do this and live life normally. I guess it is what you make it, right?

Also, I do consider myself very lucky to live in Charleston. I don't live downtown, but I visit often. It is a beautiful place to live. However, our summer has been so rainy and dreary! Savannah is amazing as well, but Charleston has my heart! I am also lucky because Charleston also has many excellent doctors and the Medical University of SC. It is a mecca of up to date medical knowledge. Thanks for your kindness! I appreciate it!
~Natalie

You guys have all be very helpful! Sandi, you MOST DEFINITELY deserve the "professor" award. So knowledgable and uplifting you are! And Jeffrey, you have an excellent attitude about things! Glad we can all get through this and move on together! I don't know what I'd do without my PDSA cronies!

If Sandi is The Professor, who do we nominate for Gilligan?