What it’s like to get IVSM treatment

I do not cry wolf. In fact, I’m the type who will try to fight the wolf alone then only when it has half eaten my arm will I contemplate if perhaps I should have asked for help. That is how I am with this disease. Stubborn, relentless and unapologetic about it. It’s not the best strategy but it works for me.

2 weeks ago I had to finally admit defeat when I found myself in the ER and was prescribed 3 days of IVSM (intravenous solumedrol). Truthfully I’d been struggling for weeks before, noticing fatigue, weakness and then excruciating back pain. I first visited my family doctor, desperately hoping it was all in my head, but the moment he saw me he calmly said, “I think this time we can’t ride this out.” It was upsetting because I’ve been holding stable for several years now. In a lot of ways, I’ve been carrying on like the disease doesn’t exist in my life. I felt defeated, overwhelmed and angry. When I finally made my way to the ER it was dirtier and sicker than I remembered. I was uncomfortable with the fuss everyone made. My first dose was administered in the ER and then I was sent home, where a home care nurse would visit and administer the 2nd and 3rd doses. I managed that 1st dose alright. It instantly made me feel sick but it also started to relieve the back pain. And then this is where I really struggled.

I had to take a forced break from work. In my head I was trying to tough it out and carry on but my body just gave up. I barely remember the days that followed, living in my bed with my supportive husband raising our daughter alone and bringing me meals. I refused to tell friends and family my condition. Some found out and each time I felt like I let them down.

My daughter is almost 4 now. She’s intuitive and knew “Mommy is really sick”. She spilled the dirt to everyone she ran into, obviously really concerned. The home nurse had to put in the IV. I didn’t want her to worry so I let her watch and made it very matter of fact. I hate needles and hate IVs more but as a parent my first concern is how she feels. The moment tested my strength because I didn’t want her to see how tough this really was. Afterwards we wore matching mesh armbands, mine to cover the IV plug, hers as a fashion statement.

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I’m not at 100% yet but I’m doing my best to pretend I am. Last week I returned to the hospital for a 2.5 hour MRI. This disease has so many ugly moments and for me this was one of those. I tell myself that unfortunately not every day can be a good day but instead I’m focusing on those things I’m so grateful for – my family, the medical care, and that it’s been a decent run between flares.

The State of Me

steroids

May has been a trying month. At the beginning of the month, I had to have a round of IV steroids. Day one went okay. When my friend Nancy Reimer heard I was having treatment, she offered to come hang out with me and brought me chai. My friends have always been so great about keeping me company when I have infusions. Nancy and I had a nice visit and talked about the NMO 5km walk/run that is coming up in the beginning of June.

Day two was a disaster. I had a hep loc in and so when I arrived for the second round, the nurse just hooked me up. I sat quietly reading an e-book. About ½ hour into the infusion, I just happened to look down at my arm and realized the IV line wasn’t plugged in! It had become disconnected and there was a giant puddle of steroids all over the floor beside my chair. I jumped up and cranked the little flow regulator on the line, shut the electric pump off and then went in search of someone to help me. I was the only IV patient that day and my nurse had hooked me up and then vanished. It took me about 5 minutes to find someone who could track down my nurse. The nurse ordered another bag of steroids and I had to start all over. She hadn’t screwed the IV line into the hep loc properly. ARGH!

Day three, it was a struggle to get up, get dressed and make my way to the hospital for the final dose. I was feeling the effects of the steroids and it wasn’t good. I thought I had done my due diligence in making sure I had the right meds to protect my stomach from the steroids, but apparently not. This time they weren’t strong enough and even though I doubled my dose, I was in excruciating pain. I felt like I was getting an ulcer and my throat was absolutely burning and raw. (The joys of steroid induced acid reflux!) The pain was so bad, I couldn’t eat or drink anything, which wasn’t helping matters. I ended up going to see my family doctor and she wrote me a prescription for a stronger medication which ended up costing a small fortune. ($96!) It took several days for the pain to subside and my throat to heal.

Meanwhile, I was utterly exhausted. The day after my last dose of steroids, I had an event to attend. I went, but honestly, that evening was a blur, both literally and figuratively. I honestly couldn’t tell you what the artists who were giving presentations said. The only thing that stands out for me was that I met some really nice people-that and the fact that at this point, my vision started to go wonky. I came home and spent the next 5 days practically in a coma. I slept for hours on end and could not get out of bed. No matter how much I slept, I just felt completely drained.

It’s now been 3 weeks since my treatment and I can’t say it’s helped me any. I still have this zapping electrical buzz down my left leg constantly. My vision has been very up and down. The crushing fatigue I had right after the steroids has mostly resolved-I always have some level of fatigue, which I think is from being on a fairly big dose of Imuran, which for me acts like a sleeping pill.

In my history of being treated with steroids, I can’t say that I’ve ever had the kind of results they are supposed to have. It’s in no way a magic bullet for any of the symptoms I’ve had. What I have noticed is that each time I have steroids, the side effects seem to get worse and it’s that much harder to recover. It’s not a good trend.

I know we all want a cure for Neuromyelitis Optica but in the meantime, I wish we had better treatment options for it too.