Med Change Mayhem

One of the delightful aspects of living with any chronic condition is the constant vigilance of new medication. Sometimes, a med just stops working as well as it did. Sometimes a dosage needs a tweak. Sometimes you need something new altogether. It gets tedious, annoying, and disruptive to the nice little status quo you've worked hard to build. Yet, we persist and adjust.

I know, Goat. Even when we can't see the end of the tunnel, we keep going.

So it is and so it shall continue to be. Sometimes you get lucky and one aspect improves. Take my migraines for example. Taking amlodipine gave me two headache free months initially (two years ago). Of course it was the lowest dose possible since I don't actually have high blood pressure. Now I have gone up a notch on that to a point where they won't go any higher. This is consequence of my sudden increase in migraine symptoms especially the imbalance issues. I was so thankful for the amlodipine at first, I didn't want to admit that I needed something else. But I did finally cave and started the Topamax fiasco. I wrote about that unpleasantness in an earlier post. Thankfully, I no longer take that one. It didn't work at all. It made matters worse. When that happens, you really get discouraged. Then something glorious happens.

OK, Hiddles, not quite as glorious as hearing you say that phrase to me, but still pretty stinkin' glorious.

I finally got to see a neurologist who suggested Lamictal. Another seizure med that is also used to treat bi-polar disorder. Oh dear. I braced myself for the inevitable onslaught of awfulness. She assured me that I wouldn't likely have any of the same side effects of Topamax, but if I did, call immediately for a consult. OK, I'll try it and slowly climb up that 6 week dosage ladder to 100 mg twice a day. Guess what: I've experienced a sharp decrease in headaches. I've had only two this month compared to 16 days of 30 the month before.

I know Cumbercutie. I couldn't be more pleased.

 On the other hand, now that I've got a way to control the headache portion of migraines, I started Benlysta for my lupus. It has to be administered via infusion, which means going to the hospital every two weeks to start and then once a month thereafter. When I got there last week, they said I needed Tylenol to prevent/treat a potential fever, an antihistamine to address any allergic response like what you get with pollen, and a steroid to give me a boost. WTH? Fine, bring it on. Little did I know that the good feeling I had leaving the infusion center would not last. In fact, I'd get progressively worse over the next 24 hours.

 I know, Sam. That's how I feel right now. It makes me snarly.

I had the infusion on Thursday and by Friday night I started to hurt all over. When I woke Saturday, I felt like I couldn't possibly get going because the fatigue was so awful. I went to the store anyway. I'm stubborn like that. When I got back, I started making pies for Easter. It was a challenge. Then I took a shower. The water hurt when it touched my skin. My clothes felt tight and pained my hips. I couldn't stand to wear my bra anymore. Oh shit! It's fibromyalgia symptoms. 

Precisely, Sloth. I didn't want it either. It hadn't been that bad in a long time.

When Sunday rolled around, I barely got out of bed. I still hurt all over and even a hug from my loving husband hurt. He was gentle mind you, but holy crap! It'd been ages since hugs hurt that bad. I dragged myself through the morning because it was Easter and we were expected at the family gathering. I chose a nice, flowing outfit that didn't hurt when I put it on. I lathered up some zinc sunscreen. I took my meds and hoped for the best. I was stiff and sore, but I managed. When we got home, off came the clothes and I grabbed some more pain killers and muscle relaxants. 

Current mood.

Benlysta is supposed to be this wonderful medication that addresses the lupus fatigue and other symptoms. It has great reviews and a high success rate. I just hope like hell that I'm not in store for this days long agony every time. I do have a life to lead. However, as I sit here on my last day of spring break, I worry about whether I will manage to get through work tomorrow. My neck keeps threatening a spasm. My body aches. My hands are pained. My extremities are swollen from water retention. I didn't get nearly the stuff done over break that I had planned because I'm in such pain. I'm going to let my doctor know this is what happened after one treatment. I know she's going to say stick with it. I know that according to one small study, it took 6 months for the incidence of fibro symptoms in women to go from 40%+ to less than 15%. But it's no wonder that people with chronic conditions get anxious and depressed. This med change thing is exhausting and frustrating and I really am worried about school tomorrow. I may even have to back out of some fun activities I had planned. 

Easier said than done, Lady Mary.

So I sit here with my neck making turning my head exceedingly painful--it seems even angrier after using the TENS unit. Even my heating pad isn't enough. I've actually considered running the bed warmer we use in winter to make the bed toasty because hey! Full body heating pad amirite? My soft robe is barely tied around me so as not to cause pain. My cats are keeping me company on the futon (If anything, this experience has revealed how badly we really need a more comfortable sofa). My hands feel stiff and swollen so much that I keep moving my rings because they are so tight. At least after three cups of lemon water and some ibuprofen I can take them off again. I guess it's all part of the chronic illness ride. People who haven't experienced it just don't know. I'm loathe to talk about it to anyone but to my husband (he has his own auto-immune issues to deal with) and anywhere but on here. It helps to vent. Thanks for reading.

 

Yes, Moose. A nap sounds wonderful.