Confused and at a loss...and a hello.

Hi all,
I've been lurking and using this forum as a reference for the past several months now since I've relapsed with my ITP, but was finally pushed over the edge after yesterday's hematology visit to make an account and post due to the nature of the results we uncovered. My name is Kaylee, and I'm 23 years old, married and trying to tackle school and work, both full time which has made this a very interesting (read: tough) year.

I was diagnosed with ITP ten years ago (at age 13) through a bout of meningitis (where that came from, who knows), where we found that my platelets had gotten so low as 2k. I don't remember much from that time, but treatment was aggressive and I was on outpatient IVIG treatments for about a year after that until my condition stabilized. Other than totally separate mental health issues, I enjoyed about 10 years of symptom-free ITP and no worries about it, even in the back of my mind.

Which is when we fast forward to Thanksgiving week (end of November) of 2014 (about 6 months ago now). The aforementioned mental health problems I have been struggling with led me to some medication that was very helpful - but caused me to put on weight. Because of this my psychiatrist prescribed me Topamax, which, off-label, is supposed to help with appetite suppressing, something I was seeking as I had gained about 20 lbs. and counting from the antipsychotics that I have been taking for my bi-polar. All in all, the antipsychotics gave me control of my life back from the mental health issues I had been struggling with for a very long, long time, to the point that taking the Topamax was worth more than not taking the antipsychotics. I tell you all of this as I feel it is a very important point...one that all of my doctors over the past 5 months have seemed to dismiss but something my husband and I feel is very true. I started the Topamax two days before Thanksgiving, very successfully. Within two days, I was now covered in petekia, something I hadn't experienced in years, but was all too familiar with. My gums, my finger nails, from the top of my scalp to the bottoms of my feet. My mouth and lips covered in sores, hundreds upon hundreds of petekia all over my body. I knew what it was but I was in denial, as surely I couldn't be having an issue ten years after being in remission. I finally caved and my husband took me to the hospital where I was admitted for several days, and my fears were confirmed with a count of 2k again. I was positive it was the Topamax, it was too coincidental, but all the doctors and hematologists adamantly denied it. They said it just wasn't one of the side effects and ruled it out.

And this is how it all began.
My treatment course was 4 rounds of IVIG and immediately starting on 100mg of Prednisone.
Then I was sent home and with instructions to follow up with my primary.
Prednisone was hell, and through my standing order with the lab for weekly platelet checks, my counts continued to drop anyways. After getting clearance from my primary to try the Topamax again since they were sure there was no correlation, I did so mid-January. To which I found myself back in the hospital for another week with counts of 3k. This was all I needed to know to never touch the stuff again, despite any doctor telling me there was no harm in doing so. It just wasn't worth the risk.
Treatment this time was another 4 rounds of IVIG and continued use of 100mg of Prednisone daily.

Prednisone has proved to be the single worst thing I have ever encountered in my short life. For an illness as seemingly painless as ITP, I have never experienced such excruciating mental and physical pain from a medication as I have from Prednisone. It's my one wish more than anything to be off of it.

Fast forward one more month to February of this year. Back in the hospital for over a week with counts of 7k then 2k. 4 more rounds of IVIG (at this point I was getting enough experience to understand that IVIG was simply a "fill the tank" treatment method - this was clearly not something for the long term. Maybe I am naive because of my age that it took 3 hospital stays to realize this, but I started researching more and realizing I needed more.) and the doctors finally saying I need something else also. My insurance got me a referral to a hematologist and upon discharge, I started Ritiuxin/Solumedrol treatments at the local hema-oncology clinic. His game plan was to do 4 treatments, once every two weeks and go from there.

This brings me to today. It's been two months now since starting Rituxin, and I finished up my fourth and final Rituxin treatment yesterday. In those two months, I was hospitalized another time. I have been on 100mg of Prednisone since December, and my life has changed dramatically and for the worse because of it. But due to one particularly hard night, I have made the choice to take an active role in my attitude regarding this whole situation. It's been hard when a lot of the way I feel is sometimes out of my hands, but despite how hard getting through my day to day is, I have to take ahold of my emotions. Anyways, the most recent hospital visit was just 4 days ago. I go to school and I work 7 days a week, I don't have any down time, but all of this was decided upon before I got sick. I happened to relapse at the worst possible time on the middle of starting this non-stop 90hrs. a week schedule, but I have tried to make the best of it since school is only 5 months long, I figured I could get through it - plus I don't really have the luxury of stopping school or work (for financial reasons). I was leaving school for work that day when my nose started bleeding. It's been in a state of active bleeding for the past 2 months, but mostly slow drips and typically only when I accidentally break the clot. Unfortunately this time was not the same and I was gushing blood profusely and choking on it and swallowing it. My teachers decided it was best to call 911 and when the paramedics arrived, found that my BP was 258/150 and I needed to be taken to the ER right away. I spent the night there and was stabilized and discharged.

Which brings me to yesterday, my last Rituxin treatment.
I have not had the most ideal results during treatment, but I chalked that up to it needing more time to effectively work in my system and while my hema. wasn't overly thrilled with my numbers either, also wasn't too displeased most of the time.

Here are my counts from the last 2 months, in chron. order:
3k- 1st Rituxin treatment
12k - Midweek checkup
77k - 1 week checkup
92k - 2nd Rituxin treatment (a very victorious and happy day for us)
88k - Midweek checkup
33k - 2nd midweek checkup
66k - 3rd Rituxin treatment
124k - Midweek checkup (another victorious day in which we thought we had a good hold of this!)
43k - ER nosebleed visit (a day when we realized things aren't as they seem)
3k - 4th and final Rituxin treatment (this was yesterday and sent us in a tailspin)


I should mention somewhere around my 2nd Rituxin treatment (last month), my hematologist gave me clearance to SLOWLY start tapering my Pred. Something I eagerly accepted as I have been on 100mg of this since December. Between then and now I successfully made it down to 25mg.

And this all brings me to yesterday. Upon receiving my counts of 3k yesterday and because of my hospital visit two days prior with the nosebleed, he decided there is no room for flexibility in my case with tapering of Prednisone, I must be on it. Most patients respond in a more systematic manner to the Rituxin, I have no real predictability and tapering prednisone was not a luxury I have anymore. It was with this he then decided I needed to get back on 100mg of Prednisone, go in this Monday (today is Friday) for a CBC, if results are not favorable I need to be admitted to the hospital for an emergency transfusion, and to start a more aggressive treatment of the Rituxin (every week as opposed to every two weeks) which I will start this Thursday. Should this fail, we will consider NPlate and other options, and possibly splenectomy, I guess. It's all a waiting game, I'm realizing.

Mine and my husband's life have been turned so very upside down since my relapse. In all honesty, the ITP we can handle, the bleeding we can manage, even as I sit here with bandaids on 8 of my 10 fingers as my cuticles are bleeding, and a nose clamp on my nose to stop the slow drip. All of this, though, is manageable. It's the Prednisone that has kept me up countless nights crying, trying to take hold of my emotions. In constant pain (something most of the doctors don't believe to be true - the joint pain which I find unbearable - I am now, much to my dismay, on a constant routine of Norco to help me get through my days). I have gained 30+ lbs. (which I find ironic considering all of this started, I believe, from the simple act of taking a medication which was supposed to help me lose weight). Stretchmarks covering literally 50% of my body. I don't fit into any of my old clothes, not even my underwear or sports bras, and I don't have the money to buy new ones. I've lost mobility in my neck and shoulders from the buffalo hump, I can't even go to the restroom and properly cleanse myself without struggling. My face is swollen to the point where I can't safely turn my head to look for traffic when I'm switching lanes. I haven't been able to wear my wedding ring in months. It sounds like I'm complaining, and maybe I am, I truly don't mean to. It's just that everything I once held as normal doesn't exist anymore. I feel as though I'm losing myself and I just can't seem to find her, despite how actively I'm trying to get ahold of my mental state. And all of this is really, honestly from the prednisone, I steadfastly believe. I know a lot of it is exhaustion and stress from this ordeal... but most of it is from this drug. My husband vowed to me that whenever I am stable again, he will do anything in his power to make sure I never have to be on this stuff again if I don't have to.

So yesterday's news of my count being at 3k again and me needing to get back to 100mg of pred. really took me for a spin. I have no idea where treatment goes from here. The irrational side of me, that started the 100mg again today, thinks I should just stop taking it. I made it to 25mg. why would I put myself back on 100? Bleeding and relapsing would be better than being on this stuff I sometimes feel. But I know I don't have that option and I know that's foolish. I don't know where we're headed next. I'm not really sure where my hematologist wants me to go. I think we're going to decide our next course of action by what my count is on monday, and again on thursday, when my 5th rituxin treatment is scheduled. I'm on my 3rd leave of absence from school - I should've graduated this week, but it's been pushed to June now. I'm supposed to take two weeks off of work too, but that's not something I can do realistically, financially. I'm just at a loss. I know prednisone isn't the end of the world. I know it's symptoms don't last forever, I remind myself of this often and am reminded by others to be thankful this treatment option is made available...but sometimes I have a hard time accepting it.

I wrote you guys a whole novel and cried through most of it. I applaud any of you who made it through and thank you. Besides my husband and family, I feel very alone in this. All of our normalcy has changed, and I thought we were maybe getting back to it finally, but I'm realizing it's not going to be our old normal for a while still. I'm okay with this and I've come to terms with it, but some days are a lot harder to get through than others and I'm apprehensive about the toll this will continue to take on me, both physically and mentally. I've never imagined such a painless disease to cause so much pain.

I guess I don't really know what I'm seeking from posting this. I've silently been reading over your shoulders for months now, and I guess I'm seeking some solidarity. Not pity, just maybe some advice. I know it'll get better, I'm just not sure how long its going to take and it hits me harder some days than others.

Thank you for listening guys, I truly appreciate it.

How about a second opinion? Is that possible? I say that because most doctors believe that there's no point in doing more than 4 rituxan treatments. Also you should have some say in treatments and if you don't want to do the prednisone any more then you should be able to say so and if your doctors aren't listening to you then you need another doctor. Find a doctor who will taper you off the steroid and try something else. There are other treatments.

Nplate is a great choice of treatment. I used it successfully with no side effects at all. It does sometimes need patience as it can take a while to get stable. There's also Promacta to consider which is similar to Nplate but taken as a daily tablet instead of once a week injections.

I agree with Ann. It's time to try something different. 100mgs of prednisone is NOT sustainable, and if that's what your doctor is suggesting, he/she has never been on prednisone. More rituxan is not the answer either.

Where are you located? We can help you find a knowledgable hematologist who will explain what other options there are at this point.

I agree. You need another doctor. Now.

NO ONE could stay on a high Prednisone dose for that long, and to expect you to keep doing it is insane. We've all been on high dose Prednisone so we understand you completely, but not for that long. The long-term side effects alone make it a very bad idea.

As for Rituxan, if four doses didn't work, it's highly unlikely that having any more will. It's overkill and a waste of time. Studies show that even the four standard dose Rituxan treatments are probably too much for ITP.

I feel for you...no wonder you're an emotional mess. Any of us would be. There are other treatment options that can work and in time, this will all seem like a distant nightmare. As Ann said, N-Plate and Promacta have very good success rates with few side effects. Your mission this coming week could be to find a doctor who is willing to try those and get your life back on track.

There is hope here. Grab it and hang onto it.

I agree with others- more Rituxin would be a mistake. And 100mg pred is WAY too much! When I was on high dose dexamethasone- (similar to prednisone) I was hearing voices, couldn't sleep at all from the chatter in my head, just exhausted depressed- over the top wired and intense! I didn't want to pick my son up from school for fear what I'd say to the other mothers. I will never take over 10mg again unless I'm at deaths door.

I also have gained 30lbs from pred and was not skinny to begin with. When I'm on the higher doses, even 10mg+ my blood pressure goes sky high and I turn into an eating machine. I just got off of it- yay! I've lost 13lbs because I was able to quit eating sugar. that wouldn't have been possible on pred.

I have taken Rituxin (worked a bit), Promacta, Nplate. Nplate has been my favorite and worked the best for me. I responded quickly, within 5 days my counts went from 2K to 12K, higher each week up to a safe number 50K. I have been on it for a year with almost no side effects. Its allowed me to get off prednisone completely- love that!

Promacta was a mild appetite suppressant for me. After one pill food looked boring, lost interest- and I was still on prednisone! so Promacta was over-riding the effects of pred in that way. I started on 50mg and was able to get my numbers up to a safe range around 50K as is recommended. It gave me mildish headaches but most people do fine. GOOd luck!

Did you switch from NPlate to promacta or the other way around and if one was working why the switch? Just curious.
Thanks.

kayleemarie it looks like you have gotten some good advice from our best. I'll just say I don't know how you do it taking 100mg of prednisone a day for so long, 60mg did me in. Thinking of you!

Kaylee, I'd like to add one thing. Some doctors make you feel as if you have no choices. You do.

I'd also like to say that I loved your IVIG analogy about the gas tank. That was a good way to put it!

Kaylee,

Predisone is not working for you - 4+ months and no significant rise in counts - ween off the stuff. You mentioned mental health issues - Predisone isn't helping with that I am sure. (by the way - your drop in counts after the Rituxan - how fast are you tapering off the prednisone? - that can have an effect it your joint/body pain and counts)

Rituxan can take up to 12 weeks to settle in - it might still work.

You need a Doctor that is familiar with ITP. It is time to get a 2nd and/or 3rd opinion.

Many of us have been in your shoes and we are here for you!!

I agree with all..time for a change of doctor and getting of pred. 100mg is way too much. The most I've had is 45mg and that made me really ill. Now I'm down to 5mg but still having trouble sleeping.