Treatment

My appointment at NYU Hospital was at 10:30AM on Thursday, January 19th. I arrived at 10 and checked in. The woman asked when the last time I had eaten was. I told her I had a small breakfast at 8:45 and she gave me a puzzled look. Apparently, the abdominal ultrasound requires you not to eat for the four hours leading up to the scan. I got frustrated because I specifically asked my doctor’s office if there was anything I needed to do to prep or anything I should know. Because of the breakfast I had eaten, they moved my appointment time to noon. They wanted to give me time to digest the food. Also, I was told I needed to have a full bladder for the pelvic ultrasound. These things would have been nice to know in advance.

Finally, around 12:15, they called me back. I was asked to change into a hospital gown and to grab my clothes and bring them into the ultrasound room with me. The tech spent about a half hour capturing images and sounds and then told me I could get dressed and leave.

It is now Monday and my ultrasound results have been posted to the NYU portal already.  I obviously don’t understand a lot of the fancy doctor lingo, but from what I can tell, the ovarian cyst resolved itself!  The summary write up for both ultrasounds appears normal. It certainly reads like there is nothing to be concerned about, but I’ll wait for the doctor to confirm before I get too, too excited. I see my GI on February 10th for a follow up. I’ll know more then.

My second iron Infusion was fine. I didn’t get a headache this time but I felt short of breath and the infusion site burned. That didn’t bother me much, though. The thing that threw me off was my CBC. My hemoglobin was at 12.2, which was barely a fluctuation from Wednesday’s 12.5, but my platelets dropped from 115 to 98. That’s a drop of 17,000 in less than 48 hours…

I’m hoping this downward trend was just my platelets “leveling out”. When I see the hematologist on February 1st, I imagine my platelets will be between 95 & 110.

My January 18th hematology appointment went fairly well. Since I’ve been off the prednisone for two weeks, I didn’t really know what to expect.  My hemoglobin is still at 12.5 and my platelets are holding steady at 115.  It’s a drop of 19 since Friday’s Infusion (in other words, my platelets dropped 19,000 in five days), but my doctor always says that platelets can fluctuate day-to-day, so I’m not worried.  The 134 seemed a little too good to be true anyways.

In terms of side effects, the itching has let up a little, but is still definitely prevalent. The dry mouth and irritability seem to have vanished. These symptoms have, instead, been replaced by joint pain. My left shoulder has felt like I pulled a muscle since before Christmas, but lately it’s been even more painful and uncomfortable. Also, the outer portion of my right thigh oftentimes goes numb and tingles. I spoke to the doctor about it and he mentioned that there is a large nerve right there and the prednisone withdrawal could be affecting the nerves in my leg. In addition, my right foot hurts when I put any sort of pressure on it, especially when I’m going down the stairs. My legs, in general, feel really achy and sore. Prednisone’s most common side effect is joint pain, so I’m not surprised. I am, however, a little surprised that coming off the prednisone has given me new symptoms, rather than just prolonging the ones I had while on the drug.

I asked the hematologist if I was in the clear now that I’ve been off the steroids for two weeks and my numbers are fine, but he said prednisone stays in your system a while. He said that if I were to relapse it would be within the first three months (usually). So I guess I won’t be “in the clear” until the beginning of April. He said that there’s only about a 20% chance of relapse at this point, though!  I’m 80% in the clear!

I see him again in two weeks (February 1st).  Fingers crossed for high numbers!

On January 11th, I saw my GI. She had my CT results from December 5th. Luckily, everything GI-related was totally fine. The only notable thing on the scan was a 3.5cm cyst in my left ovary. As a result, she asked that I follow up with a pelvic ultrasound. The ultrasound is scheduled for Thursday, January 19th at NYU Hospital. Today her receptionist called and told me the doctor had contacted NYU and added on an abdominal ultrasound “since I’m already there anyways”. I double checked that I don’t need to do anything in preparation for either ultrasound and the receptionist said I don’t, so I should be all set.

In addition to the ultrasounds, my GI scheduled me for an Upper Endoscopy at NYU on February 2nd. Much like the colonoscopy, this is another sedated procedure and I’m more nervous about the anesthesia than the actual Endoscopy.  Maybe one day I’ll overcome my fear of anesthesia, but probably not anytime soon. To prep for the procedure I have to stop eating at midnight. Unfortunately, my time slot at the hospital isn’t until 4PM. That is 16 hours of not eating + a 1 hour procedure + 3 hours of monitoring (due to my sleep apnea). Unless they give me a snack after I wake up from my procedure, I’m looking at 20 hours without food. Yikes!  Here’s to hoping that day flies by.

I doubt the doctor is going to find anything during the ultrasound or the upper Endoscopy. I feel like I’m being put through the ringer. My GI seems to be on a wild goose chase. On the one hand, I appreciate that she’s so thorough and she doesn’t immediately try to minimize the pain I am feeling or explain it away. On the other hand, everything I keep having to do is stressful and time-consuming. Don’t get me wrong, I’d rather be safe than sorry, but it’s a hassle. Here’s to hoping I’m right and she finds nothing.

Today’s Infusion went well!  The only side effect really was a headache. I worked from home this afternoon just in case, but since nothing else came about, I think I’ll definitely be able to go to work after my other infusions.

They drew blood before they started the iron drip and my platelets were up to 134!  This was my first CBC since coming off the prednisone and I have no idea how they went up, but I’ll take it!  I’m starting to think that it was the prednisone that was destroying my platelets.

My hematologist has been watching my iron saturation levels for the past few months because they have been steadily declining. Iron Saturation should be between 20-50 percent. My iron saturation at my previous appointment (late December) was only 15%, which is a full 25% below the minimum.

In order to rectify this, the substitute hematologist would like me to get weekly iron infusions for four weeks. I doubt my usual hematologist would have scheduled me for infusions (because my iron has been low before), but I don’t think it can hurt to at least try them. To be fair, this is the lowest my iron saturation has been, so I can’t say with 100% certainty that my normal doctor wouldn’t have scheduled infusions.  Also, my iron has been on the low end of normal for months.  In mid-September it dropped to 21% and has essentially fluctuated between 17-21 ever since.

I had the option of iron supplements instead of infusions, but they’re hard on the stomach and with my GI problems I didn’t want or need any additional nausea.

My first infusion is Friday the 13th (spooky!). Luckily, I’m not nervous at all because I saw plenty of other patients getting iron infusions back in June while I was doing IVIG. It only takes about 30-45 minutes and, hopefully, should have little to no side effects. Fingers crossed!

I was hoping my itching on Saturday and Sunday would be the worst of my withdrawal symptoms, but it’s getting progressively worse.  Last night I was scratching my stomach so much that patches of petechiae appeared and I scratched my forearms so intensely that I broke skin and bled a little.  Because of it, my husband had to put socks on my hands.  I literally slept all night that way.  I woke up feeling like an infant.  It was a bad time not to own gloves.

The itching isn’t the only side effect, unfortunately.  The withdrawal has caused my mouth and throat to become extremely dry.  Also, my hormone levels feel completely out of whack.  I keep crying for no reason whatsoever.  It will come out of nowhere and then will stop just as suddenly as it began.  Perhaps the most frustrating of the symptoms is the irritability.  Yesterday morning was the most I’ve ever actually wanted to punch something in my entire life and it was completely unprovoked.  Every little thing anyone said or did drove me absolutely insane.  The commute in was terrible.  It was so hard not yelling at people for bumping into me or brushing my shoulder with their backpacks or refusing to move out of the doorway when the train doors opened.  By the time I got to my desk, I was super grouchy and I took it out on my coworkers, snapping at them for no reason.  I’m lucky they were still speaking to me today – thankfully they are good sports.

In general, I have no ability to focus.  I can’t hone in on a topic for more than a few minutes and I can’t compose my thoughts to save my life.  I’ve been working on the same email for the last 25 minutes and it’s an email I send every single day.  It is only one sentence and usually takes less than a minute.  I just feel on edge and uncomfortable.  I called my hematologist yesterday morning regarding my irritability and itchiness, but he never returned my call.  I simply wanted to know how long I could expect these symptoms to last (assuming they are in fact withdrawal symptoms) and if I could take anything, such as Benadryl, to ease the pain.  Since he never called back yesterday, I thought maybe he’d call today, but so far nothing.

When I was taking Prednisone on a M/W/F schedule, the longest I went without steroids was three days (Friday to Monday). Today marks the end of day four without steroids, so that’s a new record. I’d love to say it’s going well and celebrate the small victory, but it’s not – I’m having some trouble adjusting. The most overwhelming and all-consuming side effect (of withdrawal) that I’m facing right now is itchiness. My arms, my legs, my scalp, my stomach, my chest – everything – itches. I can’t stop itching. And if I don’t itch it, it burns or feels like pins and needles. It’s making me twitchy and increasingly frustrated. I took an antihistamine in hopes of stopping the itch or at least dulling it, but it doesn’t seem to be working. I’m restless and, quite frankly, a little paranoid that this is just the beginning of the withdrawal symptoms.

Back in August my doctor had to cancel my appt last minute and left me in the hands of another doctor, “the substitute”. I was scheduled to see that same substitute on Wednesday, since my doctor was out of town. I thought it would be better since I knew in advance this time that I was seeing a different hematologist at the center, but it was still a little strange. It wasn’t nearly as awkward as when I was blindsided, but it’s hard putting your trust in someone who doesn’t know your case in it’s entirety. Knowing he is a hematologist and he works at the same center is definitely reassuring, but treatment decisions can vary slightly from physician to physician and it’s hard to put your faith in someone new.

For instance, my hematologist had said that if my platelets were still good on Wednesday he would switch the prednisone to Tues/Thurs instead of Mon/Wed/Fri. My platelets dropped from 106 to 98, so I expected the doctor to veto the prednisone taper, but the substitute said the slight change was just a meaningless fluctuation. Consequently, he not only approved the change in dose, he told me I should stop the prednisone completely, rather than switch to twice a week. I was (and still am) a little nervous about taking the substitute’s advice over my own doctor’s, but I have to remember that they simply each have their own preferred rate of taper. This doctor seemed to think that I was being weaned off the steroids at a painfully slow rate and there really is no difference in the body’s reaction to two days a week versus three.

I’m choosing to follow his instructions and end the prednisone, at least until I see my doctor on Wednesday the 18th. Fingers crossed that I don’t regret that decision!

In short:
As of Wednesday, January 4, 2017 I have been officially taken off of Prednisone, thus ending my 221-day steroid experience.

During those 221 days, the prednisone has caused some strange and frustrating side effects. The steroids have made me cry and panic and, at times, feel completely crazy and paranoid. They have changed my physical appearance and have dramatically thinned my hair (to the point where I had to cut most of it off so it looked like it had volume). Prednisone can really mess with your mind. Over the past seven months, every symptom has felt like a side effect and every side effect has felt like a symptom. I haven’t been able to determine what is a cause for concern and what is simply to be expected on high-dose steroids. I can’t count the number of days I had muscle soreness, heart palpitations, and hot flashes. I literally could not be happier to be done with the steroids. Here’s to hoping my numbers hold and my hematologist allows me to stay off of them for good! I have NO intent to start them again – EVER.

Good riddance!

Usually New Years is when I try to focus on the good things that happened over the last year, but instead I find myself focused solely on the future. Don’t get me wrong, this year had some great memories and accomplishments: our family vacation to Nashville, my first semester of grad school, and a title change at work, but in general, my health has seemed to consume most of my thoughts and decisions since May. My year came with a chronic diagnosis and a laundry list of symptoms, medications, and side effects.

I know some people that read this are going to try to convince me to “look at the positives” or “focus on the wonderful things that happened this year”, but that’s not what the majority of my year was. The majority of my year was prednisone, doctors appointments, hot flashes, hospital visits, moon face, and blood draws. Muscle soreness, hair loss, back pain, and GI problems have simply become a part of my everyday life. That is not what I had envisioned for 2016.

I envisioned a year full of love, happiness, and good health. I still can’t seem to make it a full week without some sort of incident – fainting, hitting my head, unexplained bruising, procedures, CT scans, etc. 2016 was a constant game of symptom or side effect. If I had to find a plus in all of it it would be that I can truly appreciate now more than ever the love and support of my family, friends, coworkers, and husband. Also, as cliche as it sounds, I never stopped to appreciate the little things until this year. I took my life for granted until I almost lost it. So I guess I can thank 2016 for my clearer outlook on life.

Please know that this post is, by no means, meant to be negative or take away from anyone else’s great year. I’m just ready for a change. I realize waking up tomorrow in the New Year doesn’t automatically change things. And this isn’t the part where I list a litany of things I am hoping to improve about myself this coming year. I’ve learned these last few months that things don’t change overnight and, if you expect them to, you’ll only end up disappointed. What I can say, though, is that 2017 has a lot to offer and a lot to look forward to: my family vacation to Daytona, reconnecting with old friends at Disney, four weddings, more grad school, and coming off the steroids! Here’s to a happier, healthier 2017! Cheers!