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My Latest RA Update

A little RA lesson for those that may want to know more about infusion medications and an update on what is going on with my treatment.

Biologics and non-biologics!

There are plenty out there. They don’t all work well for everyone, although, insurance companies tend to make us try them to fall them in order to move on to others.

Some of the medications are a form chemotherapy, some are used in conjunction with other chemotherapy treatments. Each is used to suppress the immune system, meaning to shut it down! Yes, that’s right. So us autoimmune people are more susceptible to illnesses and have to distance ourselves from sick people and germs, even the common cold could put us in the hospital.

Throughout my journey, I’ve been on Humira, Enbrel, Xeljanz, Plaquenil, Methotrexate by pills & shots, Remicade, Actemra, Rinvoq, and Rituxan.

Each medication has different schedules as far as when they are administered. For example, when I first began with Remicade, I was infusing every 12 weeks at a specific dose, by the time I changed medications, my dosage had tripled and was every 4 weeks.

I have friends that were on Remicade for years and it worked prior to them changing to Orencia or Simponi.

Each infusion comes with an amp up period usually. You also need very good veins, this is because the nurses must take labs at every infusion. The vials taken for me have been anywhere between 4 to 11. Then of course you have to have that good vein to receive the infusion.

Remicade usually takes 2-2.5 hours

Actemra 2 hours

Rituxan 4-5 hours

Oh, did I mention that you will receive 2 extra strength Tylenol with a Benadryl prior to your infusion and in most cases anywhere from a 1/2 a vial to an entire vial of medrol?

Im currently on Rituxan every 4 months. I go every 4 months for a 5 hour infusion, then I return 2 weeks later to repeat the same process, however, this time it’s a 4 hour infusion.

The side effects vary each time. I mostly suffer with sweats, fatigue, thirst, headache, overall not feeling well for a few days.

Let me share with you information on Rituxan

Rheumatoid arthritis. With rheumatoid arthritis (RA), your body mistakenly attacks its own joints. For this purpose, Rituxan is used with methotrexate (Trexall) to treat RA that’s moderate to severe and active. “Active” means that you currently have symptoms. You must have tried a drug known as a tumor necrosis factor (TNF) antagonist, but you weren’t able to tolerate its side effects or the medication didn’t relieve your symptoms.
Rituxan (rituximab) is a cancer medication used in combination with other cancer medicines to treat non-Hodgkin's lymphoma. Rituxan is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis.
Common side effects of Rituxan include:

headache,
fever,
chills,
stomach pain,
nausea,
diarrhea,
heartburn,
flushing,
night sweats,
weakness,
muscle or joint pain,
back pain, or
Serious side effects of Rituxan including:
increased thirst or urination,
swelling of the hands or feet, or
tingling of the hands or feet.
Moving on!

Each infusion visit, I’m usually stuck between 3-6 times because I do not have very good veins. In the ER they tend to bring in a machine to locate my veins. My bad veins have been an issue my entire life. Since 2015 when I began infusions. I was told I needed a portacath. This is a port that is under the skin and goes directly into the jugular vein. It allows nurses and doctors to withdraw blood and administer medication or infusions easily, versus sticking you so many times and blowing your veins.

For 6 years I’ve fought it. I do not like scars. I do not want this in my body. Fact of the matter is, Inwill likely be on infusions for the rest of my life, this procedure makes sense for everyone involved. I am scared. It is a surgery, there are risks. It can also be removed if ever I no longer need it for some odd reason. Unlike regular cancer patients, my port would only need flushing when a medical professional needs to take blood, administer medication, I have an IV, or infusion.

That is the gist of my update thus far! I have a consultation scheduled with the surgeon next week to discuss and set up the surgery for the port.

As always thank you for reading, like, share, comment, and follow!

Be your own advocate, research, know your body, knowledge is power! God bless!

Colorful Chaos The Journey

Not everything is always in black and white. Join us on our journey as we battle incurable invisible illnesses. We are seeking mental freedom as we prepare to unwind and unravel amongst nature. We raise awareness for Polycythemia Vera and Invisible Illnesses such as Mental Health, Rheumatoid Arthritis, Fibromyalgia, Diabetes, along with a variety of other “silent” struggles that we may deal with along the way. We are not going to let these illnesses hold us down. During our journey we need support. The support of each other, family, friends, followers, readers, and fellow, adventures! Enjoy our photography and stories. You can support us through PayPal and our Esty Shop!

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