This month marks one full year that I’ve been on Plegridy. It’s an Interferon beta-1a used to treat Relapse Remitting Multiple Sclerosis. I inject it subcutaneously every 14 days. The last year has gone by quickly, but I’ll never forget it.

When I first started Plegridy, I was just chomping at the bit to get started on a DMD, or disease modifying drug. Research says that these drugs are the only pharmaceutical therapy that reduce the number of flares you’ll experience. These can end with some sort of disability progression, so avoiding a flare altogether is the goal. Not to mention, they’re absolutely miserable.

Diagnosed in early April, I did my first injection on a June morning. A nurse educator came to my house to teach me how to do it; I practiced with a fake pen on a cushion first, then my leg, and then it was go time. Once it was finished, she gave me a neat little booklet to record my injections in, a sharps container, and then I was on my own.

The next couple of days I had some flu like symptoms, but it wasn’t until I was on the full dose that I had serious issues. I was vomiting often, had the chills and a fever for three days after injections, and serious back pain. I also had no appetite, so within three months I’d lost 20 pounds. Thankfully, I had it to lose, but it sucked. so. bad.

A few months later, I came down with pneumonia – upper respiratory infections can come hand  in hand with interferon usage, so I wasn’t surprised. But I was sick. Very, very sick. Sick to the point my Mom almost forced me to go to the hospital. Getting sick with MS is something I wouldn’t wish on my worst enemy. But, I just tried to pretend like I was ok for weeks and go about life as normal.

When I went to the OBGYN for a regular check up in October, even she noticed my breathing and color. Even though she told me I needed to follow up with my PCP immediately, I called my neuros office. I’m stubborn, I didn’t think I was dying, so I didn’t think it was an emergency. *insert eye roll here

So I was definitely surprised when my nurse called me back that evening. I hadn’t marked the note as urgent, so this was unheard of. She gently chastised me and told me to get to a dr ASAP. So, I went to Med-Check, and was given a breathing treatment basically as soon as I walked in. I left with two antibiotics, an inhaler, and some steroids, my fave.

(that’s sarcasm, btw)

When I finally got over the pneumonia (or assumed I had), I did feel much better, besides the nausea. The never ending nausea. In November, my Neurologist prescribed Compazine. On his advice, I decided to stay on the Plegridy and see how my quality of life was affected with the new med. He was happy to look into switching DMD’s, but thought I’d benefit most if I could stick with it. So, I have.

I can’t believe it’s been a year.

A year later, and I just got over a horrible case of sinusitis. I’ve been sick more times in the past year than the last ten. Maybe this means my immune system is finally working normally? Whatever it is, I’m so tired of the antibiotic + probiotic routine.

But, I’ve learned a lot that has made my life easier.

For three days prior, I stay super hydrated, and take naproxen or acetaminophen an hour or so before the injection. I do my injection at night, so I sleep through any chills or nausea I get immediately after. Sunday nights are injection nights; I know I usually have Mondays off from school, and if I feel gross, I’m able to just rest. 90% of the time, I don’t have any post-injection issues anymore. (except the site issues. ugh)

I’m also happy to report that the weight loss has seemed to stall. I lost 85 pounds by changing my lifestyle, and then another 50 pounds with the help of interferons. When I keep up with my whole food smoothies and exercise, I’m able to eat enough to keep my weight up. The moment I slack in my routine, 5lbs automatically drops off, and it’s been enough to keep me on track 90% of the time. I still have no appetite, but I think that’s due to other issues.

There are only two symptoms that still *really bother me. Asterisk needed because let’s be real, even if I’m only nauseous a few days a month, those days are miserable and possibly ruin an important event. The most troublesome, by far, are the injection site reactions and depression.

If you’re lucky enough to see them, my injection sites make me eligible to work at Target, no application needed. Worse than the big red circle is the obscene amount of itchiness I endure. I’ve trained myself to rub or pat them now, but I used to scratch so hard I’d sometimes bleed. That’s easier to do than normal, of course, when the skin is almost scaly with little bumps in some places. Fresh aloe from my also obscene amount of plants is the best preventative and relief by far for relieving my issues.

The depression is by far the worst side effect. It’s a very common side effect for those using interferon therapies. I’ve been on medications for depression, but mostly anxiety, on and off for years. This time was very different for me. In the past, the anxiety was crippling, but I could usually shake the depression off. There was no way this time.

I’m 99% sure the depression is what’s causing my lack of appetite (not to mention lack of interest in anything) and it was definitely impacting me in other ways, too. I was irritable, crying over spilled almond milk, worrying about any and everything, and intrusive thoughts were my new bff. Especially since I was trying to isolate myself, because depression loves to make people feel alone and want to be alone.

When I talked to my doctor about going on an antidepressant, she was almost thankful and very receptive. I could tell she had been worried about some of her observations, but knew how I felt about most psychiatric meds at that point. I really try any and all non-pharmaceutical interventions first, then turn to western medicine. So far, it’s working.

Overall, I have to say the last year of injections hasn’t been great, but it hasn’t completely derailed my life.

Yes, the nausea sucks, depression really sucks, and it took a few l o n g months to get a hang of and learn to cope with the side effects.

But, I haven’t had any progression in my MS – all my flare issues subsided when we finally realized it was infection related and treated it accordingly.  I get an MRI soon, and hopefully, it’ll show what I’m feeling. I’m getting closer everyday to the physical health I enjoyed before the big flare of 2018 when I got diagnosed.

I guess, all in all, I have to say the last year has been worth it – that is, if my MRI confirms there has been no progression. If I go in there and my lesions are lit up like a traffic light….I’ll be singing a very different tune, I’m sure.

I’ve met a few fellow warriors with very different experiences with interferons…some got so sick they swore off western medicine, and some swear it’s the only reason they’ve been flare free for 20 years. I hope my story if one of the latter, for sure. But only time will tell.

Any of y’all have experiences with interferons, or DMD’s in general, that you’d like to share? Of course, I’m not a Dr, and I can’t give you medical advice…but I can be an ear to listen if you need to talk, or just vent.

I hope to have a couple more posts live this week, so please check back soon. I’m really enjoying to get to know more of you, and hope you’re enjoying the blog, too. Please let me know if there’s anything you’d like to see here on StumblePup – I’m always excited to hear suggestions!

Until next time,