RSS Feed

Category Archives: Side Effects

Hell or High Water

Thus far all field research has proved I am immortal. Well, at least more difficult to kill than anticipated. The side effects of the Benlysta lasted quite a bit longer than anticipated. The psychological impact was a surprise for all involved, luckily I’m doing better now. Through some act of god my teachers allowed me to finish my school work over winter break [well one JUST got finished]. In fact, upon receiving my email explaining the situation they had a group meeting and figured out what needed to be done in order for me to graduate on time and finish out the semester.  I realize I am incredibly lucky/blessed to have teachers who are so willing to go up to bat for me. Not a single one asked for a shred of evidence, they took me at my word. This is absolutely amazing considering the nature of my situation and how damn weird it is. Thanks to them I was able to keep my internship and am almost done with my student teaching. This is not to say there haven’t been issues.

For instance:

  • Right now I am having hip and shoulder issues and doubled up on my Celebrex.
  • I can’t feel my hands and feet intermittently due to peripheral neuropathy.
  • Steroid shots.
  • My rheumatologist wants me to seek treatment for my hands [who has time for that?]
  • I’m still getting headaches even though I just had my Botox treatment.
  • Fevers.
  • Intermittently needing my cane.

Despite this laundry list of grossness, I need to focus on my goals. My husband and I are buying a house [we move in 3 weeks, I have packed nothing], I graduate in a just over a month, and I am fielding multiple job offers. These are all things I had at one point or another seen as impossible. These are the things I strive for, this is what beating RA looks like. I know I will never be who I was before I was sick, just like I know there is no cure. My definition of beating RA has been altered, I once thought that meant a cure. I now know that beating RA is living your damn life.

Advertisements

Lucky 🍀

xxx52bzThese past few days I have been trying to focus on the good. I am lucky that I didn’t get something worse in my IV. I’m lucky that I have the friends and family I do that support me. Honestly if I didn’t have the support system I do, this would have been a devastating hit. While this is no means ideal, it is not going to be the end of me. I have worked with all but one professor to ensure my ability to work from home and finish out the last few weeks of of this semester. My professors have rallied around me in a way I had not anticipated, for this I am eternally grateful. I owe all my professors so much for how gracious they have been regarding the situation. I am hopeful that I will be able to finish out my semester and begin my student teaching in January as planned.

Now as far as the physical symptoms from the Benlysta go, they have been pretty consistent. I have been sleeping between 13-16 hours and waking up exhausted. I have a hefty dose of headaches and nausea. I have been drinking stomach soothing tea and eating candied ginger like no ones business [I strongly recommend both for medication induced nausea]. Thankfully the chills have let up but I am still rocking a fever. Hopefully things will start to level out as my body has a chance to process this crap out of my blood. We will see how things are going once we start running labs.

 

Actemra and Spines

whoop ass

Good News! As of a month ago my rheumatologist told me I’m in the best shape she has ever seen me! We also decided it was finally time to begin treatment for the chronic dry mouth my Sjogren’s has caused. I started Evoxac roughly a month ago and it has been FANTASTIC! I had no idea that it was possible to eat without food getting stuck in my throat or to talk without my mouth being so dry it clicked. My insurance covers most of the generic so I am most excited. The Actemra has continued to help massively without needing to increase the dose. I am now experiencing significantly less side effects; my mouth sores are considerably less severe, the fatigue is no longer crippling, my kidney’s stopped getting infections, and it no longer gives me a headache. Apparently it is surprisingly common for Actemra to cause some not-so-fun side effects right off the bat but tends to become more mild over time.

Spines, we need them. Much of my life I have had back pain for one reason or another, be it sports, rheumatoid disease, car accidents, or simply sleeping wrong. My spine has become hypermobile in some places and hypomobile in others. Essentially that means that certain vertebrae tend to get pulled out of alignment and others refuse to move at all. Since I my RA/RD is suddenly under control I have been able to identify this problem which has likely been going on for a reasonably long time. I started attending physical therapy for the 9th time last week. I cannot speak highly enough of my new PT! Both him and the student he is teaching are incredibly knowledgable about the joint complications that RA/RD, fibromyalgia, and my various surgeries. They have designed a special care program for me that is working around my cervical vertebrae as the ligaments are at risk due to the RA/RD [the most dangerous/lethal part of RA/RD]. I will be in PT for 2 weeks and then evaluated for change, should I not improve in this time I will be sent to a back specialist due to concerns of long term damage.

The one thing that is giving me a tough time currently is the liver spasms that continue to cause pain, nausea, and vomiting. I  am waiting to see my GI in 2 weeks to find out what/why this is happening. I no longer have a gallbladder so it can’t be that at least.

Overall this has been a month of good news health wise and I am very hopeful.

Actemra Adventure Part 1

12540772_621488934658425_3027297718057050984_n

Actemra, what is it? Actemra is a rheumatoid disease specific drug that can be injected or in my case infused. Actemra is the only drug of its type as it is an IL-6 inhibitor, which means it works differently than TNF-inhibitors like Humira, Orencia, Enbrel, and Remicade. I had my first IV of Actemra 3 weeks ago and have good news and bad news. Bad news first, during the IV my blood pressure dropped to 84/62 and I almost passed out, I also was nauseous for the next few days and felt as if I were back on Methotrexate [which made me nauseous always]. Additionally my hair started to thin [specifically on the right side] and is visibly different, hair loss is not a common side effect of Actemra so I’m attempting to pin down what happened there. Good news, I FEEL LIKE A PERSON! After months of feeling gross and immobile I can move around more easily, even with my boot. I am treating the hair thinning with Lush Cosmetics hair products. I am willing to have a few days of feeling like hell in order to function on this level normally. Hopefully I will continue to operate at this level for some time, I remain hopeful that the Actemra will do its job.

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!

Feed Me Seymour!

singing camelsAs anyone who has ever been on Prednisone will tell you steroids make you want to eat your way through everything that even resembles food while simultaneously running around in circles [okay that last bit may be just me]. I typically do my best not to take it as it really upsets my stomach and tends to make me a little crazy. Well once again in the wake of a massive flare, I have found myself riding the Prednisone train. My rheumatologist is worried that it may be more than me just reacting to storm season and is concerned that this is a sign that I’ve built up a tolerence to Orencia like I did with Remicade, this is worrisome as there are only a handful of RA medications that I haven’t been on yet. I’m not even sure what to do if I run out of potential RA medications, clinical trials won’t take me due to my high white cell count, my low red cell count, and my latent TB. I’m doing my best not to focus on the bad and continue to eat my way through this very large container of tofu pad thai. T-minus 13 days until the Mayo, fingers crossed ya’ll.

Throat Ulcers: Because why not?

money slothThroat ulcers, because why not. My throat has been killing me for 2 weeks and I’ve been toughing it out until today. I went to the urgent care near my house [I don’t have a GP in town yet] and it took him all of 10 seconds to tell me I had major throat ulcers that “could have been brought on by anything’ I then told him about the chemo vs. thrush sores that have been an issue and he said it wasn’t related to either but could be RA based or a complication from the immunosuppressants. He said it could be a long term issue and that he could treat but not cure them. So as the situation stands I’m just using a ton of magic mouthwash [which is a liquid combination of Lidocaine, Kenalog-4, and diphenhyd] and hoping for the best.

Young Yet Infertile

Surviving an unexpected pregnancy & single motherhood after IVF, miscarriage, heartbreak & divorce

PITMINI

I'M NOT LUCKY BUT BLESSED

Rheumi Warrior

The pain you feel today, is the strength you have tomorrow!

Carla's Corner

Day by day with RA ...

Teachers In UAE

Have you ever taught or are thinking about teaching in Abu Dhabi in the United Arab Emirates

WalkingThroughPain

Join me as I live my life with Rheumatoid Arthritis, Lupus, and Fibromyalgia

Lachlan + Cathy

Welcome to the House of Payne

Queer Guess Code

Unraveling Sex and Gender in Pop Culture

Does Your Journey Seem Long?

Living in the Colors...

Thought Catalog

Thought Catalog is a digital youth culture magazine dedicated to your stories and ideas.