I thought I'd share my struggles with medications today. Apparently I have developed into one of those people that has numerous allergies/intolerance's to medications, which makes for some fun times.
The first medication I was placed on was Prednisone. This was because at the time I couldn't afford Colcrys as it was no longer generic. Thank you a-hole drug companies and our government for that one. So the evil Prednisone... Or so it's called by most of us BD'ers. For me, Prednisone was the best medication ever! I actually felt normal. Yes, normal. I could work and felt great. Didn't cure me 100% but at least I was able to function. I could care less that I might develop diabetes or turn into a raging bitch while on it. Even if I would've sprouted wings and a moustache, I would've stayed on it. As long as I felt good, who cares?! A little less than 3 weeks into it, I developed severe tooth pain. The tooth pain had slowly gotten worse and by the time I made it to the dentist I was convinced I would need 3 root canals- no joke! I was prepared for at least 3 root canals that day. The dentist then proceeded to tell me there was nothing wrong with my teeth. Wait, what?! Nothing wrong. She told me to go off the Prednisone. Low and behold, my teeth got better almost immediately.
Now that the Prednisone was out, I was told by my rheumy at the time, the only other medication there was is the Colcrys. No! It's too expensive because there is no generic in the United States. I started looking into Canada. Thank god for Canada! I was going to order 3 months worth for $45, which is great since that was the cost to me with my insurance here in the States for 1 month! Seriously, how do they ever expect people to afford this shit? Especially when you're sick and are struggling to work and pay bills. The day I was going to order, my friend/coworker, Dr. Tara Doyle found a coupon for it for only $15 a month. I set forth to the pharmacy, coupon in hand, and determined. Started the medication, within a day I started getting this numbness/tingling/burning in my upper lips and teeth. I tried the Colcrys several times to make sure this was truly causing it. Same results every time. Seriously? Why is this happening to me? This was just the start of numerous medications I would try. Little did I know...
Many months had passed where I was without a rhuemy- 6 months to be exact. I was on no medication aside from pain pills and OTC stuff. I found my current rheumy, Dr. Grandits- thank god for her, who said of course there's other medications you can try! Huh? I was told by 2 other rheumy's there is no other meds for Behcet's. Dr. Grandits gave me a list of 14! Woot Woot!
We started with Plaquenil. I thought I'll take it at work in case I have a reaction. I had a reaction alright! It landed me right in the bathroom vomiting. I felt like complete crap the rest of the day/night. I couldn't even eat dinner. Needless to say, that was the end of that one.
Methotrexate was next on the list. This one landed me in the ER. I took it at night and started feeling icky, but was getting use to feeling icky when starting new meds. I woke up looking like I had a bad sunburn on the upper half of my body. Even warm to the touch like sunburn. As the day went on, I started getting pain in my kidney area and decreased urine output. I only went to the bathroom twice from 8 AM-1PM. So totally not normal for me and I had been chugging water like crazy. Finally decided I better go in to make sure I wasn't going into kidney failure. The doctor was more concerned with the redness than the kidneys, not me- I want my kidneys intact and working! Thankfully they ended up being fine and guess what he prescribed? A Prednisone taper. Ha ha! Yeah right. I've learned I can't take more than 10 mg in a week of Prednisone or I get tooth sensitivity. And yes, I tried doing Prednisone once a week to see if it would make a difference with my symptoms but it didn't and I can't go around feeling like I need root canals every day for the rest of my life. It was a miserable couple days waiting for the Methotrexate to pass out of my system.
Next was Arava. This is the most horrible medication out there in my opinion. I started getting nightmares. The kind of nightmares where I would wake up sweating, panting, and heart racing. Makes for a good horror movie or book but not something I care for on a daily basis. The worst part of this medication is it fucked with my memory. I wasn't sure if I was getting neuro-behcet's or if it was from the medication at the time. Now looking back I know it's from the medication. This was the medication I was on around Valentine's day. I had sent out cards to my family the week before and then again the week of Valentine's day. I have no recollection of sending them out the first time. None what-so-ever. Scary. There were also some other instances of me forgetting small things. Either way, never something you want to go through when you're only in your early 30's.
During the time of no rheumy, my primary doctor prescribed me Cymbalta for pain. I ended up getting a severe dry mouth with this. Nothing I did helped. I tried sucking on things- cough drops and candy- get your minds out of the gutter:) Tried drinking water, juice, etc. Nothing helped, so scratched that one off my list. This was another one of those lovely drugs that isn't covered by insurance. Thankfully on the manufacturer's website, there was a free 30 day trial.
Can also scratch off Gabapentin from the pain medication list too. I had tried this years ago for my pelvic adhesion/endometriosis. Even on the lowest possible dose, I couldn't handle it. I took it at night, almost fell over several times when needing to go to the bathroom. The worse part was trying to wake up from it the next day. I wouldn't fully come out of the medication hangover, as I like to call them, until 2 PM the following day. I tried this for about a week hoping my body would adjust to it. No such luck.
Then there's the most recent, Topamax. This was to be for the BD headaches. I took it at night, hoping it would help me sleep. Guess what? I'm one of the 3% who get insomnia from it. Awesome. Once again, I'm special. So I took it during the day hoping it would give me a little kick of energy since those of us with BD lack it. Maybe helped for a couple days. I was to increase the medication up as time went on. I had horrible stomach issues from it and it also affected my memory and thought process. By the third week, I had to sleep with a bucket by my bed from the intense nausea. Even my nausea medication, Compazine, didn't fully make it go away. I was so miserable by week 3 and at the time I wasn't sure what it was from- a bad flare up? the Topamax? the Imuran? After tinkering with my meds, I learned it was from the Topamax. Waiting to hear back from my neuro to see what the next step is. I believe it's going to be another medication. The fun never stops.
I am currently on Imuran and tolerating it. I can't do a full dose, but that's OK. I'll work my way up there. Crossing fingers it will work or make a difference. At least I haven't ended up in the ER or bathroom while on it. Yet...
I won't bother you with the other medications- antibiotics and birth controls that I've had a reaction to. My allergy/intolerance list is now at 11. I have no doubt this list will grow. I never thought I'd be one of "those" people. Either way, this has not stopped me from continuing to try other medications. My goal is to find something that makes me feel like the Prednisone did because what I wouldn't give to feel "normal" again.
I had the same miserable effect from Neurontin, along with bad nightmares. The med has to out weight the side effects and that one didn't for me either. Keep at it, and let us know when you find the ones that work!
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