It's been a while since I've posted anything here. A lot has happened and sometimes I get discouraged too easily. I also tend to procrastinate, especially when it comes to writing. I don't know why maybe it's fear or that negative voice that tells me that "no one is gonna read this or even care so what's the point?". Yet I must press on and keep typing! Especially since I have something to celebrate!
In the summer of 2016 at the apex of my flare up, I was in an excruciating amount of pain. With Scleroderma and RA, every joint in your entire body locks up. It hurts to move even a millimeter. Like I have said before I wouldn't wish this pain on my worst enemy. Conventional pain meds were not enough anymore and I refused to take meds that would mess with my brain chemistry so my doctor suggested I try the Fentanyl patches.
I was so out of it at the time and delirious from the pain that I started applying these patches to my skin without really researching about it. We were desperate to get me some sort of relief and as dangerous as this drug is, I must say that it did help. The dose I was started with was 100mcg. I remember when we told my pulmonologist (lung doc), he was shocked because of how small I was.
The side effects were no joke. Your body goes crazy if you don’t have the patch on consistently. One time I went just one day without it because it is a controlled substance which makes getting the prescription filled a hassle. I thought I was going crazier than usual! I got hot flashes, chills, shakes, anxiety oh my! It was I would say just as bad as the flare up pain but on a mental/emotional level. I read that the reason for such high security when it comes to getting this medication was that it is being badly abused. Some folks were even sucking on the patches just to get the high. Yes, it did feel good for a moment after applying the patch to be mostly pain free but the way my body reacted when I missed just one day was too scary. I knew I had to wean off of this drug asap!
After receiving my first round of Rituxan injections, the inflammation subsided a bit and I was able to lower the Prednisone dose (which is another one I’m hoping to be rid of soon!) and the Fentanyl. I was on Fentanyl for a little over a year, going from 100mcg to 75 to 25 then to 12 as of a few months ago. I decided to change doctors last year (which will probably be another blog post in itself) and I asked to be put in a pain management clinic. That really helped me to wean down although they prescribed me hydrocodone along with the 12mcg of Fentanyl. A funny thing happened though. The only way to get my prescription, I have to visit the pain management clinic and the doc has to write it out then and there. So if I run out, I have to wait until my next visit. After the second visit, I started to run out before my next appointment. Instead of changing the patches every two days, I would wait and change every three if I could. Then on this last visit which was last week, the doctor realized she wasn’t prescribing me enough patches! I’m sure anyone else would have been upset but we (my hubby and I) were laughing because we knew this was God’s way of working things out like He always does! So I told the doc that I had been without the patch for almost a week. She was surprised and said that the worst part should have been over by now. We were elated! That’s what we were hoping for. So I told her not to bother writing another prescription for Fentanyl.
I don’t know how difficult it is to come off of this drug but by the grace of God I did it! Sometimes I feel a little weird occasionally but it’s nowhere near what I felt on the stronger doses. I’m putting my trust in my Heavenly Father that I am finally free from it. This is a small victory but a big glimpse into many more to come in the future. Well I better get to sleep, I have round 2 of 2 of Rituxan in the morning!
