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Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

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A Case For Belsomra

looking for alaska**I am not a medical professional nor do I receive any money for my opinions about any pharmaceuticals**

Now that we have that out of the way lets talk about a brand new medication called Belsomra. Belsomra is a new sleeping medication that works differently than any other drug on the market. It targets the neurotransmitter ‘Orexin’ which allows wakefulness and shuts it down for a 7 hour period thus allowing for sleep.

Now I personally have struggled with chronic insomnia literally my entire life, as a child I’d stay up for days on end and survive on little to no sleep. It’s been especially tough since leaving PRC and no longer have my pain medications sedating me. I have tried all sorts of medications including but not limited to Trazidone, Ambien, Lunesta, Restoril, and Rozerem. None of which offered any real relief or sleep. A month ago I was talking with my psychiatrist after an especially rough night [only 1 hour of sleep] she said she wanted me to be her first patient to try a new medication that just hit the market. I started taking Belsomra and for the first time in my life I not only fall asleep in under 30 minutes but also wake up feeling rested and not waking up every hour throughout the night. This has been a bit of a game changer as it is the first thing in my entire life that has actually let me sleep without waking up feeling drugged. The best part is that regardless of my pain level I have been able to sleep. It’s easier to manage the pain and fatigue I do have due to the fact that I’m actually sleeping.

Below is  a link to the official Belsomra website:

http://www.belsomra.com/?utm_source=google&utm_medium=cpc&utm_term=belsomra&utm_campaign=Branded+2.0&utm_content=sfHq7EgOy|dc_pcrid_62893172885

Now That’s What I Call A Blaze of Glory

sad dino suitSo. For those of you who have followed me on facebook you may know that I started a small fire last Wednesday. Not in an ‘arsony-crazy-chick’ kind of way though so don’t get too worked up. So I had a candle that I’d moved to my nightstand and a box of issues was a little close. When I looked down I thought “hmmm, that’s toas– OH MY GOD FIRE”, in a fit of panic and not wanting to die I picked up the fiery ball of tissue death, ran towards my bathroom, drop the fiery ball, pick it back up, throw it towards sink, lands on mirror somehow sticking, I scraped fire monster into sink [RIP toothbrush]. At think point I’m amazed I didn’t burn down my damn house, I also realized that my right thumb had 2nd degree burns. My roommate was kind enough to drive me to walgreens because I thought I just needed some burn ointment [for the record I’m actually first aid trained], while in Walgreens my skin started to blister and hurt like crazy. My roommate took me to the ER where the nurse practitioner told me “I don’t give female patients ‘Silvadine’ [RX burn cream that EVERYONE uses] because it can discolor your delicate hands”. I told him I didn’t care and that fire also has that effect on hands. Here’s where things take a turn. They wrapped my hand and gave me something for pain. I thought it was a fairly low dose hydrocodone mix [like Vicodin] NOPE.

1 Lortab later I lost my house key and don’t remember going home. I do however remember waking up from my codeine induced coma thinking 2 things. 1) this is the most I’ve slept since Mayo PRC 2) Everything hurts and I feel like death. SO. I ditched the remaining Lortab I was given and got all eye of the tiger and soldiered on. This adventure made me realize that I really can’t have pain medication no matter the situation, at PRC they say that it’s okay if it’s an acute issue but for my own sake I can’t. On the upside I’m only 1 week out and my hand is bandage free for the first time today, the skin is still messed up but it’s not terrible.

Sincerely,

The girl on fire

FREEDOM

Posted on

RDJ alcohol and narcoticsToday I went to see my rheumatologist. At the beginning of the appointment I was straightforward in telling her about my trip to the Mayo and what they had told me regarding my lack of RA symptoms and the presence of Fibro symptoms. She was very attentive and listened to my whole spiel. I asked if this meant that we questioned my initial diagnosis of RA and she said no, she pulled up a chart on her computer showing my total swollen joint count over time and pointed out how many swollen joints I’d had initially and how they decreased over time as we became more agressive in our treatment. She checked my trigger points and said that they had not been this bad previously and showed me a chart of my previous positive trigger points, neither of us are sure why it is suddenly worse but we agreed that continued use of Lyrica and Tramadol was in my best interest [due to the use of Tramadol I am COMPLETELY off of the Vicodin!]. Then I asked the question I have been dreading and fretting over: “Can I stop my methotrexate?” For those just tuning in Methotrexate [or MTX for short] is a chemotherapy drug that in small doses is used to treat autoimmune diseases such as RA. It is very harsh on your body and I personally have had the unfortunate side effects of mouth ulcers and nausea. In short I would very much like not to be taking MTX injections once a week. So I asked her if I could stop this horrible drug AND SHE SAID YES! I am officially off MTX! This is kind of a big deal. I then asked about my other RA medication Orencia, she said that if my RA is still in remission [which she confirmed is what happened] in 6 months that I can discontinue Orencia! BUT she was very adamant about this disclaimer, once RA is in control getting back to remission after a major flare can be hard to come back from, so from here we proceed with caution. On a positive note I begin tapering off of the NSAID Celebrax tomorrow as they think it may be contributing to my stomach issues.

Additionally I went to the ENT that my mother is very fond of to seek out help for my oral ulcers, he was very helpful and gave me MEGA oral ulcer solution with more drugs in it than I can remember [mostly used on chemotherapy and radiation patients] and some oralgel paste. They are already getting better!

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