When I first heard that there was finally a medication approved specifically to treat lupus, I was so excited. Finally, all that awareness and lobbying was paying off. My first few treatments were rough, but I was assured that it'd get better. It did. I just felt a bit fluish afterward. A bit of headache that was stopped with a triptan. My relief eventually gave way to doubt as the months wore on, however.
Best be alert! Right, Goat?
It boggles my mind that a medication for lupus would have a 5% occurrence of increased migraine activity. Migraine is a common complaint among lupus sufferers. As someone who already had migraines, I was hoping that the side effect was a low enough incidence that I would escape unscathed.
You got it, Hillary. It was not to be just like your presidency.
Sorry about that, BTW. You were robbed.
Since the start of January, I have had 14 of 15 days with headache. Not just headache mind you. For the last four days, I have had a stabbing in my left eye. There was the teary, bleary eyes and runny nose, too. The pain was worse when I got up to get water or go to the bathroom. Ice packs only helped until they melted. Heat pads felt great, but were only moderately helpful. A warm shower felt delightful, but I felt guilty about draining the whole water tank. My TENS unit was the biggest relief. My triptans ran out. The extra samples from my doctor ran out. I was well-hydrated as my pinch test proved. I had eaten, although my appetite was significantly decreased. I just got disinterested in eating after a while. Rather ruins a three-day weekend.
You're not wrong there, Dean.
Anyway, my neurologist got me approved for Botox treatment. I was surprised to see the low numbers for success. It reduces pain days by only 2 days a month when compared to regular treatments (Topamax or Depakote etc.) or placebo according to a study review by The Journal of the American Medical Association. Side note: headache and migraine are listed as Botox side effects. You can also become immune to Botox. Yeah. That's a thing. WTF? So Botox could reduce my 14 days so far this month to 12? The month isn't done and I am full of trepidation about this new horizon of medication. Even if they decrease, it might not last as is the case with a lot of meds I've tried. Consequently, I contacted my rheumatologist via the Patient Portal. If it is Benlysta, then maybe the side effects outweigh the benefits at this point.
I feel ya, Willow.
Since today was a holiday, I didn't think I'd hear back from her until tomorrow, but she wrote almost immediately. She said to DC the Benlysta for now. I see her in February. Until then, no Benlysta. When I go see her, we'll talk about a few other choices. Those choices include Methotrexate, prednisone, Imuran, and CellCept. *sigh* I guess I have some investigating to do.
Here we go again, Scully.
Today was my first day since the 2nd without waking with a headache. I was ecstatic. I got so much done today. I was smiling; I was laughing; I had sex with my husband; I left the house! All these things that people take for granted, I was actually able to do today. The sun is starting to set, and I am feeling the head start to get fussy. A little unsteadiness along with some yawning and a bit of eye squeezy.
You heard me, Moose.
Here comes the pain again.
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