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.
Side Effects
The Useless Day
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!
The Side Effects
I hope every day isn’t going to be like today. I wish I could at least know how long these IVIG side effects are going to last. Or I wish I could know how much of what I’m feeling is due to Prednisone withdrawal. I’m inclined to believe it is a combination, like the doctor suggested, but I’m praying most of it is just from the IVIG, meaning it will subside and eventually fade away within the next week or so. If these headaches and lack of concentration are mostly due to Prednisone tapering, I’m screwed for at least the next month. UGH!
The plan today, tomorrow, & Thursday is to work from home, but today was a total fail. I logged on around 8AM, had breakfast, took my pills, worked for about an hour and then the intense migraine set in and looking at the computer screen was making me want to claw my eyes out. I had to walk away. I took a couple of Percocet and then immediately fell asleep for an hour or hour and a half. By the time I woke up, the painkillers had kicked in and I had about 30-45 useful minutes before my headache returned. Anddddddd repeat the same process. All day. I ended up having to cancel/reschedule my graduate school interview that was scheduled for 6PM via Skype because I couldn’t function for more than a few minutes at a time. I feel bad cancelling and I hope it doesn’t hurt my chances of admission, but there is no way I would have been able to accurately portray myself in a video interview like this.
By the time dinner rolled around, I didn’t have much of an appetite. I made myself eat anyways, especially since I didn’t eat lunch. Then I had to face my newest enemy – the shower. Once again, my oxygen level dropped and my heart rate shot up. I don’t know if it is the steam, the enclosed space, or the fact that I’m standing for more than a couple of minutes, but it is extremely frustrating.
I think the thing that is perhaps the most frustrating, though, is how crappy I feel in general. A couple of weeks ago when my platelet count was awful, I felt totally fine. Things were going crazy inside my body, but on the outside, I had almost no symptoms. At the time it was terrifying, but now I miss it. It’s ironic how “getting better” has made me feel so, so much worse. Now that my platelets have reached an acceptable level, I’m all of a sudden completely broken on the outside. How does that make any sense?! Maybe this IVIG treatment was more intense than I had originally thought.
The Final IVIG Treatment
Today was a disaster of a day. From the moment I woke up I had an excruciating headache. By the time I got to the doctor’s office for my 9AM appointment, I was very shaky and sick to my stomach. They took me in the back a little after 9:15 and I chose the corner recliner again. I took two Tylenol and then the nurse drew three vials of blood. Luckily, the vein on my right elbow that they used the first day was healed enough to be used again. That meant no searching for a vein on my forearm and no bruise! They started me on a bag of fluids and then the Solu-Medrol. By this point, it had been almost an hour and my symptoms weren’t improving at all. I was shaking and whimpering in the chair and writhing around in pain. Then, the hot flashes started. I was literally dripping sweat while everyone around me had on blankets. All of a sudden the nausea hit me HARD and I had to ask for a puke bucket. The nurses asked if I had eaten any breakfast, which I had (blueberry bagel with butter and jelly), and then pricked my finger to check my blood sugar. My blood sugar was at 76, which they said was low considering what I’d eaten for breakfast, so they brought me juice and asked me to sip on it.
At this point, the nurses were concerned and called my doctor. He came back and saw the condition I was in and asked the nurses to give me a Zofran drip to help with the upset stomach. He then told me that the IVIG was working! He said my hemoglobin was at 10.5 and my platelets had skyrocketed to 159,000 over the weekend! Unfortunately, the side effects I was experiencing were a combination of the IVIG taking its toll on my body and the lower dose of steroids (withdrawal). At least it wasn’t all for nothing! I would hate to have these miserable side effects AND be told the IVIG didn’t work.
After the doctor left the room the nurse started the Zofran drip followed by the Benadryl, which put me to sleep. By the time I woke up it was 11:30 already and they were JUST starting the first vial of Carimune NF. Thankfully, the Zofran helped my stomach immensely! I still had no appetite though. I didn’t touch any of my snacks except for a PB&J and even that didn’t settle well.
They ran the first drip slowly because I was already in such a weak state. The vial finished around 1:00 and the second finished by 2:00. Based on my timelines from my previous three treatments, I had expected to be done and out of there by 2:00, but I was only halfway done. Halfway?! That fact sank in and I started to get visibly upset. Yes, this means I cried. I was in a room full of elderly patients and I was crying and whimpering in the corner while they stared at me. I don’t even feel bad. I can’t even begin to explain the amount of pain I was in.
The nurses started the third vial at 2:15, gave me two more Tylenol, and sped up the drip. By the time the bottle finished at 3:25, I was in even worse shape. I have never felt so uncomfortable and miserable in my entire life. I asked the nurse to talk to the doctor about skipping the fourth and final vial. Another hour in that chair would have been excruciating. Luckily, he told the nurse it was fine to skip the last vial and that I should head to his office so we can talk about next steps before I head home.
My husband drove over from work and met me in the doctor’s office so I wouldn’t have to be alone. The doctor answered my questions (below) and gave me a prescription for Percocet (a combination of Oxycodone & Tylenol) to combat the awful headaches.
I slept in the car while my husband ran into the pharmacy to fill my prescription. As soon as I got home I took two Percocet (instructions say take 1-2 every 4-6 hours for pain) and passed out. When I woke up a couple of hours later I felt infinitely better, but the relief was short-lived.
Can I go to the cottage?
Yes, absolutely!
Can I swim in the lake?
Of course!
When is my next appointment/blood draw?
One week from today. Most places will be closed on the fourth, so Tuesday is fine. I will need to go to a Quest or LabCorp up near the cottage. He gave me a prescription for bloodwork and the results just need to be faxed to him. He is also on vacation next week anyways, so it’s not a big deal that I am not in town.
How frequent will they be after that?
Depends on how the numbers looks. While I’m still on the steroids, blood draws will likely be once a week to make sure my numbers are holding steady on the lower dose of steroids. My next appointment with the doctor is Monday, July 11th.
Will I ever be able to drink alcohol again?
Luckily, I didn’t even have to bring this up – he addressed it on his own! He said that I can definitely have a couple drinks each day like a glass of wine or a beer. He just doesn’t want me doing keg stands. So looks like I’ll be able to sip on some Moscato or hard cider next week after all! I’m still going to take it easy, but it’s nice to know I have options.
How much Prednisone should I be taking and when will my next taper be?
He said taking 75 mg over the weekend was perfect – thank goodness! He wants me to stay on the 75 mg a day until I see him on July 11th. My assumption is that he will then taper me to 50 mg a day, so long as my counts are holding steady.
The Semi-Productive Sunday
Today was the most productive day I’ve had in a while. I woke up around 7, made myself breakfast and sat down to watch Netflix. After I ate I took my pills, ordered my husband a present off Amazon, added to yesterday’s blog post, and emptied the dishwasher. I laid down for a couple hours and then around 11 folded all of the clean laundry in our apartment – about four baskets full – before making lunch for my husband. We caught up on a few of our shows that we had fallen behind on and then he fell back asleep. I took this opportunity to do some work I hadn’t been able to get to during the week. I don’t like being behind and I finally had a three hour block where my headache was under control and I felt focused. That has been one of my major problems this last month that I didn’t even realize was happening until today – I have been completely unable to focus or concentrate on something for very long and I have been confused a lot more easily than usual.
Anyways, my day was productive and I felt accomplished. The only downfall, besides the massive headaches, is that I couldn’t manage to make it through my shower tonight. It felt like someone was sitting on my lungs. I tried pointing the water off to the side so it hit the wall instead of pummeling me in the chest, I tried making the water colder, and I tried just standing for a minute with my arms at my side, but no matter what I did, I couldn’t get my heart to stop fluttering and I couldn’t catch my breath. I would normally be afraid I was relapsing already, but the doctor said the Prednisone can cause the jittery/fluttery feeling.
I had to get out of the shower and sit on the bathroom floor until my heart rate returned to normal. I then proceeded to cry for a solid ten minutes. Why are even the simplest of things so much harder lately? I don’t want a pity party and I don’t want to whine about how life isn’t fair, because it could always be worse and I’ve been blessed with so much in life, but I just wish I could know what’s normal. I wish I could know how much longer things are going to feel this way. I just want answers to questions that have none. For instance, how does one’s immune system just all of a sudden stop recognizing its own RBCs and platelets? Is there a cause? Is there something I could have done to prevent this? Is there a chance my immune system will ever reverse its decision to hate itself? I want to know more but ES is so rare that there is little to no research on cause, prognosis, or effective treatments. Every patient responds differently to the medications and it is essentially a guessing game – trial and error.
At this point, all I care is that I can get something for this headache because the Tylenol isn’t cutting it.