Friday, January 8, 2010

Instant Post Injection Reaction to Copaxone (IPIR)

9-ish months or 280-ish days into giving myself a daily injection for MS, I had the Instant Post Injection Reaction (IPIR). I had the feared, the fabled, and the dreaded reaction! a week before Christmas. And guess what? I got through it like a pro and a champ! I was so proud of myself for preparing myself well for this possible reaction because although my reaction was intense, scary, and utterly exhausting, I stayed calm.

So, what is the IPIR? The IPIR is a rare reaction to the medication that can occur 35-45 seconds after you give yourself a shot. It is rare, they don't know why it happens (and it doesn't do any permanent damage), and it is completely random, so it can happen at the fiftieth injection or the two-thousandth or never. It can involve a range of reactions including flushing, sweating, heart palpitations, difficulty breathing, and, in my case, intense nausea.

When I was first diagnosed with MS and I was first considering Copaxone, I had glossed right over this part of the drug warning at first. That is, until I zeroed in on two very helpful blog entries from two different MSers who described an incident of IPIR. They told their stories without fanfare or drama--just the facts ma'am--and it suddenly became clear to me that an IPIR can be incredibly scary. What struck me even more than the details of the reaction, was how each woman emphasized not only how scared, shocked, and caught off guard they were, but also how grateful they were that their significant other was home with them when it happened. In fact, they stressed and underscored how grateful they were that they weren't alone. Uh-oh. Sinking feeling. I live a-l-o-n-e.

I sprung into action to address my intense fears of this reaction. I got a second opinion on which drug to use by traveling four hours away to the MS Center closest to me. I spoke with several Copaxone users, one of whom was a peer-to-peer consultant for Copaxone, who had had the reaction and who was particularly reassuring and gave me some good tips--mainly, to stay calm and to distract myself by focusing on TV or something else during the reaction.

Perhaps most importantly, though I worked with a yoga teacher for five one-on-one sessions--no yoga, actually, just talking--and we addressed my fears around the MS generally and my fears around the IPIR specifically. For me, the fear was so enormous and overwhelming, that I knew that no simple--"it's rare" or "there's nothing to be really frightened of" pep-talk was going to be sufficient. So, working with a mind-body-spirit worker and addressing each element of the fear from a whole-person perspective was essential for me. And, it did the trick. Five sessions later and my fear was non-existent. The reality of the potential reaction was there, but it in no way preoccupied or worried me. Most importantly, I built skills to allow me to stay calm if I had a reaction--I had deep breathing, a soothing mantra, and the realization that it would pass.

On the Saturday before Christmas, I gave myself a shot. I got up to get something from the fridge and by the time I got there, I was hit with a wave of the most intense nausea. My thought was "I. need. to. lie. down. right! now!" Before I could make it to my bed, however, I thought, "I am going to throw up everywhere!" As I sped towards the bathroom, I passed the medicine cabinet mirror. I saw my beet red face in the mirror and I thought, "What is wrong with my face!?" It was then that I realized I was having the IPIR. It was intense. Flushing, flop sweat, overwhelming nausea, difficulty breathing, I couldn't talk really or communicate. I barely made it to the sofa. I sat upright (you're not supposed to lie down during a reaction), and breathed slowly. I spoke calmly, lovingly, soothingly to myself: "You're OK, you're alright. You know what this is."

Within 15-20 minutes, the reaction had passed. And, then I was shaky and utterly wrung out. I mean, the stuffing was knocked out of me completely. I was absolutely. exhausted. And I couldn't get warm.

Before the reaction, I had been peppy--up and at 'em--looking forward to going to the local coffee shop, running errands, etc. The reaction, though, reduced my ability to move and operate to a half foot by half foot.

By chance, I had a massage appointment later that morning and luckily it is a half block from my house because I barely felt up to walking that far and if it had been any further or if I had had to drive, I wouldn't have trusted myself to drive. As I told my massage therapist about the reaction, I teared up. The reaction had really shaken me up. The massage--gentle, reassuring--helped immensely. By the end of the session, I felt re-grounded in my body. I took it easy for the rest of the day and evening. I went home and took a nap. I canceled my evening dinner plans. I took the night off.

The reaction definitely shook me up with its intensity, but my preparation was key in helping me stay calm and not escalating my anxiety. Once the reaction started, I just had to surrender to it because it was already in full force. Even more importantly, once I received the OK from my doctor, I got up the next day and gave myself a shot again and I have given myself one every day since. I have had to let go of the fear and the what-ifs and live in the present. It has been an important lesson--afraid enough to prepare and not so afraid I am paralyzed by fear. And, it has been an important lesson about choice. Taking medication is my choice, staying with this drug is my choice. I may decide something else in the future, but this is my choice right now. Just realizing that this has been my choice has been incredibly essential in my feeling empowered, not diminished by the challenges of this entire year.