Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

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That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

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The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.