side effects | Me, Myself, and Evan's

The Prednisone Problems

Posted on July 8, 2016

The Prednisone side effects are getting old – FAST. I just want to take a nice, relaxing, hot shower in peace! That isn’t an option. I didn’t even like showering that much until the steroids ruined shower time for me and now I want it back. I’m sick of short, cold showers. And feeling rushed. And did I mention cold? Using cold water is the only thing that seems to delay the overheating/hot flash/heart palpitations. Ugh.

Today I was getting dressed (putting on my pants, to be more specific) and, without any warning or buildup, my heart rate jumped to 165. It felt like my heart was trying to beat out of my chest and escape. Usually my heart palpitations gradually worsen and it slowly gets harder to breath. This was different, though. I got short of breath very suddenly and it scared me. I had to sit down. Oddly enough, my heart rate and breathing returned to normal almost as quickly as they spiked. It shouldn’t be that terrifying to put on pants. I would hardly call getting dressed a physical activity/exertion, but I guess I’ll add it to the list.

The other strange side effect I’ve been having now that I’ve been on high-dose steroids for six weeks is muscle weakness/tenderness. My husband tried to massage my shoulders earlier and the muscles in my upper back/shoulders were EXTREMELY tender and sensitive. Even though he was barely applying any pressure to the area, it was very painful. This concept is lost on me. There are areas on my lower legs where I have this problem as well. The area is sensitive and, when touched, feels the same way pushing on a painful bruise would feel. The part that concerns me is that there are no bruises there – not on my legs and not on my back. So why is it that these areas feel so bruised and painful? Is this the muscle weakness and destruction sometimes resulting from Prednisone usage? Will this problem reverse itself once I’m off the steroids or is this permanent? One more thing to worry about.

There is good news, though! Since the AIHA was the only one of the two diseases responding to the Prednisone and my hemoglobin went up despite the lower dose, I am fairly confident the doctor will taper my dose again on Monday! The taper will likely have little to no effect on my platelets, so it’s irrelevant in regards to the continued treatment of the ITP. Thank goodness! Get me off these things!

The Post-Treatment Blood Draw

Posted on July 7, 2016

My IVIG treatments finished on Monday, June 27th and my one-week blood draw was this past Tuesday, July 5th. I called my hematologist’s office yesterday morning and they had the results of the CBC from LabCorp already. To my surprise, my hemoglobin went up to 11.6! Even though my Prednisone was decreased to 75mg, my hemoglobin went up…? Can that really be true?! Ecstatic doesn’t even begin to cover it. The hemolytic anemia was, originally, the worse of the two problems. It was the AIHA that caused my jaundice and elevated bilirubin and landed me in the hospital in May. I am VERY excited that the AIHA is essentially in remission at this point. It will still need to be monitored as I continue to taper off the steroids, but I am no longer worried about it.

My platelets, on the other hand, plummeted again. My last platelet count was 159, which was great considering 150-450 is considered the normal range. Fast forward to this week and my platelet count was 62. In case you don’t feel like doing the math, my platelets dropped 97,000 in eight days. That’s not ideal. I had read that the problem with IVIG is that it is often a quick fix, but a lot of times doesn’t work long term. The infusions are meant to give you a large boost in platelet count, but then it is up to your body to continue producing platelets and to know not to kill off the good ones. I think if there was an underlying cause to my low platelets, such as alcohol consumption, drugs, etc., IVIG and abstaining from the problem substance would have been enough to fix it. Take away the problem – take away the destruction. Then it simply would have been a matter of infusing the platelets and PRESTO! Since my problem is ITP, which, by definition, is an autoimmune disease focused on platelet destruction with no underlying cause, my treatment options are more trial and error. The infusions worked to boost my platelets, but my antibodies are still latching on to these platelets and marking them for destruction. Until/unless my immune system can begin to recognize its own healthy platelets again, I’m not super confident my numbers will ever be under control. It seems ITP is going to require constant maintenance.

The thing that I find really frustrating is that, of the two autoimmune diseases that comprise Evan’s Syndrome, ITP is the one that is harder to recognize or diagnose. With AIHA, I felt sick and miserable and tired and weak. With ITP, I just bruise easily. I don’t feel sick, I don’t feel broken or weak, and yet, I’m undergoing long treatments and being kept home from work. I know I’ve said it before, but it is so hard to grasp the concept that I’m sick but don’t feel sick. The idea that my body is destroying itself without any indication is frightening. How am I ever going to know if my platelets are low without a blood draw? I won’t. At least with AIHA, there is a chance I will be able to notice when something is wrong (to some extent). I’m afraid with ITP that I’ll never know there’s a problem until it’s too late.

When I see the doctor Monday I find out what comes next. He’s probably going to recommend a bone marrow biopsy (no, thank you) or another round of IVIG infusions (not loving that idea either). Hopefully he doesn’t immediately jump to Rituxan (the chemo-like treatment). If I had to guess, I’d say it’s likely that there is more IVIG in my near future, but maybe he’ll try a different route considering the reaction/side effects I had by the final treatment. Maybe he’ll say 62 is a safe enough number and he will hold off on any additional treatments and let me wait it out to see if the number holds! Either way, at least half of the ES is under control and responding to treatment the way it should be. One down, one to go!

The Paranoid vs The Cautious

Posted on July 5, 2016

This morning my husband and I had to drive into Saratoga so that I could have a blood draw. We had to drive 50 minutes there and 50 minutes back all for a three minute blood draw, but otherwise it went well. I’m not sure how long it will take to get the results. I am much more likely to hear my numbers from the doctor than from the lab. LabCorp said they are going to mail me a copy of the results, but it could take 7-10 business days to receive. I’ll already have my next blood draw (and results) by then, rendering today’s results useless. I’m hoping my hematology center gets the results by Thursday and I can call them and ask for my hemoglobin and platelets. I’m not worried about the platelets, but I’m a little nervous about my hemoglobin. Since the RBCs were responding to the steroids, I’m afraid the taper will have negatively impacted them. I would love to at least be able to maintain a double digit hemoglobin number and triple digit platelets.

I had a lot of trouble with the hot flashes today. It was 80 outside and humid. Being indoors wasn’t enough to beat the heat. I had the fan directly in front of my face and was still dripping sweat. I had to go into the lake to cool down, which did work, but then when I got back up to the cottage my oxygen saturation was at 93 and my heart rate was at 164.

In addition to the heart fluttering and profuse sweating and shortness of breath (only when my heart is racing) I’ve been feeling lately, my stomach hurt earlier. This is the part I hate. The first time my hemoglobin was low I didn’t recognize any of the symptoms as a cause for concern. At the hospital, the nurses and doctors kept saying “at least next time you’ll recognize the symptoms”, but that’s not necessarily true. The reason the symptoms didn’t concern me the first time isn’t because I didn’t notice them happening – it’s because they are such common symptoms. They can be caused by anything. My stomach ache could be because I ate too much or too fast. Back pain could be related to an injury or stressor. These aren’t things that are going to set off any bells in my head. Right now it has the opposite effect though and ALL of these things are setting off bells. My brain keeps thinking any one of these common symptoms could be the sign I’m supposed to recognize or be looking for in terms of a relapse or drop in my numbers. Am I paranoid or simply being cautious?

Also, the fact that exertion of any kind, no matter how small, completely knocks me on my ass isn’t going to be good. Walking up about 20 stairs from the dock to the cottage caused my heart to beat like crazy. Imagine how my commute to/from work is going to be everyday. That is 52 stairs in the morning and a fairly lengthy walk uphill in the evening. It wasn’t easy or pleasant before and now it’s going to be even worse. Essentially, any time I have an “episode” where my heart starts racing, I have to sit down, relax, drink some water, sit in front of a fan or apply ice packs to my face and neck, and take deep breaths until my heart rate returns to a safe level. That’s going to get old FAST in the mornings. But I’ve already been out of work for nearly six weeks. I’ve been working from home as much as possible, but the last couple of weeks were useless between treatment and the nasty side effects of treatment. I feel guilty because my hematologist keeps pushing back the date in which I will be able to return to work. At the same time, though, I trust his professional opinion. The earliest I will be back in the office is Tuesday, July 12th, pending the results of my July 11th appointment and blood work.

I’m not even sure what the game plan for Monday’s appointment is. I’m assuming the discussion will be largely based on my blood counts. I figure if my counts are good, he will taper the Prednisone again and set up an appointment for the following week to check my progress. If my counts dropped, I’m not sure what happens next. I doubt they will have dropped low enough to warrant any kind of immediate action, but he may bump the steroids back up to 100 mg. I highly doubt he will increase the dose because he wants me off the Prednisone as much as I want to be off of it, but there’s always a chance he will choose that option. Regardless of my counts, I’m sure I’ll have weekly blood draws and appointments until I am off of the steroids completely.

Once I’m off the Prednisone, the doctor and I will be able to focus on what caused the sudden AIHA & ITP (ES) and how we are going to treat it long term. In the meantime, things are all still up in the air:

How did this first 25 mg taper affect my numbers? Is it going to affect my platelets too or just my hemoglobin? If my numbers didn’t drop does that mean my immune system fixed itself? Is it possible that this has gone away and will never be a problem again? Will the next taper be more drastic or would we expect to see the same type of results? At what point during the tapering process is relapse most common?

There are so many things I wish I could know before it’s too late. I don’t want to find things out the hard way this time.

The Shower Situation

Posted on July 4, 2016

Last night’s shower at the cottage did not go well. My heart rate by the time I got out and got down to the basement to get dressed was past 160 again. The cottage shower is similar to ours at home in the sense that it’s a standing shower, rather than a tub, and it’s square. Unlike ours at home, the walls aren’t glass and instead of a door there is simply a curtain. I was hoping the curtain would make a difference and allow the steam to escape but it didn’t help much at all. Every time my heart starts racing it becomes SO hard to take a deep breath. I don’t know which scares me more – the fluttering or the difficulty breathing. I also wonder how much my asthma plays into this. My asthma has always been very mild, though, and only really flares up when I have a cold/bronchitis or when I exert myself/exercise. I don’t really consider a shower exercise, though… It never bothered me before the Prednisone. Here’s to hoping this problem reverses itself once I’m off the steroids! Tonight’s plan is to take a colder, shorter shower and to put a fan in the bathroom window to help with airflow.

The Struggle to Relax

Posted on July 3, 2016

The week is going to be more challenging than I thought – being in the sun caused my heart rate to skyrocket to 166. I was only in the sun for an hour and I spent that hour sitting on a boat – it’s not like I was moving around or exerting myself at all. How am I supposed to last a week at the cottage without going in the sun? All we do is drink and float in the lake. So now that’s two things I can’t really indulge in – the drinking or the floating.

The Inconsiderate Assumption

Posted on July 3, 2016

On our way to the cottage yesterday, my husband and I stopped at a thruway rest stop to use the restroom and grab a snack. As I was washing my hands, the lady at the sink next to me was blatantly staring at the bruises on my arms in horror. She was NOT subtle at all. Judging by the look on her face, I am 99% certain she thinks someone beat me and gave me these bruises. Part of me wanted to yell, “I have low platelets, bitch!” or perhaps a simpler, “I have a medical condition”, but then I realized it’s none of her damn business! I shouldn’t have to explain myself to strangers.

Though I find it rude, strangers have every right to stare, but they have no right to know my personal business. I shouldn’t have to feel self-conscious washing my hands in the restroom. If you’re going to make assumptions or judge me, fine, but please at least be subtle about it. It would be different if her face showed concern, but it was just disgust. I’m sure she went back to her car and told her husband or friend or driving companion some crazy story about the bruised woman in the bathroom. Speculate all you want, lady, I’ll just be over here trying to find a long sleeve shirt to wear all week in the eighty degree weather. So, thanks for that. I know I shouldn’t let other people’s looks or judgments bother me, but it’s hard to ignore the looks.

Fade, bruises, fade!

The Huge Improvement

Posted on July 2, 20161 Comment

Today was leaps and bounds better than the past few days. First and foremost, I woke up without a headache for the first time in almost a week. Second, I was able to get up and walk around the apartment. I had spent the last four days almost completely bedridden. Today I woke up, took a shower, ate breakfast at the table with my sister and her roommate, and then helped them get ready and make plans for the day. It was so nice spending time with them! I finished packing some miscellaneous stuff for the cottage and then my husband and I started the trip upstate. Luckily, I survived the four hour car ride without a hitch! I never would have made it if we had stuck to the original plan and gone up last night. It was definitely worth waiting.

The cottage is relaxing, as always. It doesn’t hurt that we have WiFi here now, too. As I write this I’m sitting by the fire, listening to a live band across the lake, and other lake goers are setting off some fireworks. It’s so nice to be around other people and to be able to relax. It’s nice not having to worry about the noise of the music or sparklers giving me a headache or the bright light of the fire bothering my eyes. Hell, it’s nice even just sitting up in a chair without feeling shaky. I’ll leave you with a picture of my current view.

The Surprise Visitors

Posted on July 1, 20163 Comments

My little sister and her roommate were supposed to fly to Denver, CO last night for vacation, but due to flash flooding, all flights from Chicago to Denver were grounded and the airline couldn’t get them on a flight until Saturday night. Since they already had the days off of work and their bags were packed, they decided to take a spontaneous trip to NYC to stay at our apartment while we’re at the cottage. I’m excited that my sister got to see my apartment, but I’m even more excited that we overlap for about a day and a half, meaning that I got to see my sister today! It doesn’t make up for the Chicago trip I had to miss last weekend, but it’s still ten times better than not seeing her at all! I knew I missed her, but I forgot how much until I got to hug her.

In terms of my side effects, today was certainly better than the past few days. I still didn’t leave bed much and my appetite this morning and early afternoon was practically non-existent, but by dinner I was able to eat a real meal and sit up in bed for a little bit. For some reason, even though it makes me extremely overheated, laying on my husband’s shoulder makes my headache better. It might just be psychological, but I’ll take it! Also, the makeshift blackout curtains that my husband hung make a huge difference. My eyes have been super sensitive to the light.

The one thing that hasn’t improved at all is showering. Last night’s shower was rough. I think I was finally able to pinpoint the exact cause of the shortness of breath, though. The problem is the steam. Since our new apartment’s master bathroom has a small, square, glassed-in standing shower, the steam accumulates fairly quickly. Don’t get me wrong, I love having a glass shower, but I wish it was a little bigger so the steam had somewhere to go. The only way to obtain any relief was to periodically open the shower door to let some steam out and some cold air in. Basically anytime I wasn’t under the water (ex. soaping up or shampooing my hair) I had to leave the glass door open. Again, not ideal, but at least it was a workaround. Hopefully this won’t be a problem forever.

The only other update is that my foot cramps are back. That is definitely due to the Prednisone, though, so hopefully it won’t be a problem within a few weeks. I’ll just have to deal with it until then.

I’m finally all packed for the cottage and we’re hoping to leave tomorrow afternoon. Fingers crossed! Last time we headed to the cottage was Memorial Day Weekend and that didn’t end well, so here’s to hoping we finally get the relaxing week away that we want/need. My husband has been such a trooper taking care of me and waiting on me for over a month at this point – he deserves the chance to relax! Hopefully my Percocet/Oxycodone will keep the headache at bay long enough for me to relax this week, as well! Or at least long enough for me to survive the four hour drive upstate!

The Slight Improvement

Posted on June 30, 2016

The side effects were slightly less intense today. Don’t get me wrong, my headache was still raging and the loss of appetite kept coming and going, but at least I had a two hour window where I was able to get some work done. Not much else to report.

The Useless Day

Posted on June 29, 20162 Comments

So much for working from home… Today was a nightmare. The side effects of the IVIG and Prednisone were non-stop torture. I can’t even think of a time today where I was able to sit up for more than five minutes. Also, my foot cramps returned and I had a total loss of appetite. I had to force myself to eat which, in turn, only angered my belly. Around lunchtime I called my husband crying and begged him to come home from work because I didn’t feel good and I was scared to be alone. Luckily, his boss is very understanding and let him work the afternoon from home.

I don’t know what I would have done this last month if I didn’t have my husband. He has been my saving grace. Today, for instance, he came home and made sure I ate lunch, grabbed me an ice pack for my headache, stroked my hair, and repeatedly kissed my forehead. The forehead kisses this last month have been numerous and much-appreciated. Nothing makes me feel more loved than a forehead kiss.

In general, today’s main issue was the headache. I suppose a better word would be migraine. My husband hung the black-out curtains in the bedroom so I didn’t have to deal with the light making my migraine worse. He also unscrewed a few of the lightbulbs in the bathroom so it wasn’t overwhelmingly bright every time I went in there. Even so, the pain was pounding on the right side of my head and it was pounding ALL day. I sincerely hope tomorrow is better. Laying in bed all day gets old after a while. I have work to do and I have to pack for the cottage.

I read an article online about IVIG that said the side effects only last up to three days after treatment is finished. I hope that’s right because it would mean the side effects should be gone by end of day tomorrow! I guess that is when I’ll find out how much of this is IVIG-related and how much is due to the Prednisone taper. Fingers crossed that tomorrow is a better day!