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Round 2 of Round 2 of Rituxan- An Update

By the 4th hour of my Rituxan infusion, I was so tired. I could feel the medication working through my body. Hot and cold, then wanting to crawl out of my skin. I absolutely despise this feeling.

This was second round of the second round. Today my regular rheumatologist was not in. I had another rheumatologist check in on me. He is sending me for a biopsy on my hands/ fingers due to the constant swelling and what I call “explosions”.

My fingers hurt so bad. Literally I do not have fingerprints on my thumbs or pointer fingers because the skin is peeled and it’s red to the point of rawness.

The rheumatologist ordered 9 tubes of blood for additional autoimmune disease testing. Suspect: Full blown mixed connective tissue disease.

I was told early on that this was the case. He stated that my RA factor, SED rate, and ANA tests were all over the place throughout the years. The rheumatologist feels as though something else is going on. Duh 🙄

What exactly is mixed connective tissue disease?

I have discussed this early on in blogs, I’m quite certain, however, here is a refresher.

Mixed connective tissue disease (MCTD) has signs and symptoms of a combination of disorders — primarily lupus, scleroderma, and polymyositis. Many people with this uncommon disease also have Sjogren's syndrome. For this reason, MCTD is sometimes called an overlap disease.

https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

Essentially I’ve been diagnosed with a ton of autoimmune illnesses and show all signs, symptoms, and tests confirm, yet there may be more going. Various autoimmune diseases can take years to show a positive blood result. It's possible that something is not even being treated or maybe the treatment is not right, which could be causing the autoimmune diseases to multiply.

I haven’t a clue. I’m not going to worry over it because all I can do is pray that the new labs show what may truly be going on so that my rheumatologist can get a better handle on my conditions.

In my heart of hearts, I KNOW that there is something brewing in my body and not being treated. I just have not found the right doctor to uncover it as of yet! I have a big God and he preforms big miracles, I'm confident that if not in my lifetime, if I'm not a true testimony to uncovering exactly what is wrong all together, I will plant the seed for further research!

Let us continue, shall we?

I have an upcoming appointment with my dermatologist. The rheumatologist ordered biopsies on my fingers and hands. I'm not looking forward to it. It sounds painful! The rheumatologist would like to determine if there is something else going on with my hands besides vasculitis and what type of vasculitis it is.

The next conversation was about the COVID vaccine. Apparently since I’m on Rituxan, I cannot receive the COVID vaccines until 2-3 weeks before my next infusion.

The rheumatologist explained to me, Rituxan targets the B cells and tries to suppress the autoimmune system, COVID causes the B cells to run ramped. If I have the last COVID vaccine prior to my next infusion, within the allotted time frame given, I will be set up to destroy any reaction I could potentially have.

The rheumatologist went on to explain to each infusion patient the timelines and medications each individual patient needed to hold off of in order to receive their COVID vaccines.

I remain hopeful for more answers. I continue to research reliable sources. I am my own advocate. I question everything and work with my doctors. I expect my doctors to work with me. I expect knowledgeable doctors.

If you are dealing with an autoimmune illness(es) or know someone that is, please talk to your specialist or have your loved one talk to their specialist verses their PCP.

Primary care doctors are simply not equipped to know the information about our autoimmune illnesses and treatments as it pertains to the vaccines as well as our specialists do.

Stay healthy everyone and just for the fun of it, I will keep everyone updated on the biopsy results and labs!!

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