As I begin Actemra with Infusion # 1
I learn New Things About My Body Too
July 16, 2020, began my very first Actemra infusion for rheumatoid arthritis and my overlap autoimmune illnesses. This was at the office of my new rheumatologist, the experience I knew would be a little different from prior experiences, as prior infusions were with other infusion centers. Each infusion center is different. From the nursing staff to the infusion set up. I really loved my last infusion nurse and the set up at the rheumatologist office. Now I am on a new journey.
I am generally never nervous. I was well hydrated, the nurse was able to stick the vein in my hand the first stick. She was able to draw labs and use it for my infusion. My new rheumatologist came to where I was sitting to actually complete my visit and I was very much impressed with the time he took to listen to me and communicate with me.
For years, I have dealt with rashes on my face. They burn, they tighten, then they almost blister, then they peel. Typically around the exact same time, my lips become extremely chapped and hurt, my thighs and the back of my legs break out and itch too.
My new rheumatologist viewed the pictures that I have taken over time and immediately told me exactly what the dermatologist told me, this was definitely an autoimmune reaction. It is "autoimmune vasculitis".
Actemra is also used in adults to treat giant cell arteritis or inflammation of the lining of your arteries (blood vessels that carry blood from your heart to other parts of your body).
He explained how when I feel my body burning from the inside, it is actually the inflammation trying to get out, my autoimmune system is overactive and attacking itself, therefore, it attacking anything and everything. It is moving to my veins, thus the "autoimmune vasculitis"
Vasculitis can occur spontaneously as a disease unto itself, or in other instances can occur in the context of a broader autoimmune disease such as rheumatoid arthritis or lupus. In those autoimmune diseases, the body perceives its own tissue as "foreign" and the immune system attacks the body’s own cells. Vasculitis may also be a reaction to certain medications or in the presence of certain chronic infections.
Symptoms of vasculitis are related to the part or parts of the body affected. For example, vasculitis affecting the vessels close to the skin’s surface is characterized by rash, whereas forms of the disease that affect blood vessels that supply the nerves may cause alterations in sensation. Treatment for vasculitis may involve monitoring in mild cases, but prompt intervention with immunosuppressant therapy may be required in patients with more aggressive forms of the condition. Accurate diagnosis by a rheumatologist is essential as these are generally very treatable diseases as long as the diagnosis is made before significant organ damage occurs. (https://www.hss.edu/condition-list_vasculitis.asp)
Also, some chronic (long-term) infections, including hepatitis C or hepatitis B virus, can cause vasculitis. Vasculitis can be a part of other rheumatic diseases, mainly including systemic lupus erythematosus, rheumatoid arthritis, and Sjögren's syndrome. Most patients with vasculitis have none of these diseases. (https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Vasculitis)
This I despise. I have always prided myself on having great skin. I wear sunscreen on my face. I do have photosensitivity; therefore, I am not in the sun if it can be avoided, yet my body is burning from the inside out.
What a difficult body to live in.
We also discussed my overactive histamines. Lately, when I eat something that I would normally eat, or even at times when I am just sitting, my tattoos swell up and itch, or even my lips swell up and itch. Then I have to take a Benadryl or two. This is also part of my autoimmune illness. Who knew? I didn't.
I did find these facts and included several articles below. Quite interesting:
What are mast cells?
Mast cells are "master regulators" of the immune system. They come from bone marrow and go into all tissues of the body. Some diseases, such as mastocytosis, derive from an increased number of mast cells. Others, such as Mast Cell Activation Syndrome (MCAS), are the result of the activation of mast cells.
"What are Mast Cell Disorders and Mastocytosis?"
Dr. M. Castells, American Academy of Allergy Asthma & Immunology, Video, 7/28/16
Did you know?
Some diseases, such as mastocytosis, derive from an increased number of mast cells. Others, such as Mast Cell Activation Syndrome (MCAS), are the result of the activation of mast cells. But did you know that many other diseases and disorders have been found to involve mast cell activation, including asthma, chronic fatigue syndrome, coronary hypersensitivity syndrome, eczema, fibromyalgia, idiopathic anaphylaxis, irritable bowel syndrome, multiple chemical sensitivity syndrome, neuroinflammation, postural orthostatic tachycardia syndrome (POTS), psoriasis, and even autism. (http://www.mastcellaware.com/index.html)
Our hopes are that my body will accept the Actemra treatment, I will receive it every 4 weeks, intravenously, if my body accepts it, it will not only help my rheumatoid arthritis, it will also help my vasculitis, my headaches, everything with my overactive autoimmune system.
After my visit and my infusion, I was so exhausted (it only took a little over 2 hours for the first infusion). I came home and slept and slept and slept.
It is fairly common to be exhausted after infusions, for days at that.
My rheumatologist did place me under general quarantine for 10-14 days due to the Actemra also being an autoimmune suppressant and he was worried about COVID exposure. I have a few other areas of concern also with my lungs, he will do further testing once my labs are back.
This continues to be a long road. I will not be shaken. I have GOD, I have Ed, his family, my children, and grandchildren, I have a small circle of my own family.
I have an absorbent amount of faith in myself also. I am strong. I will continue to fight for answers and treatment.
It is so interesting over the years to think of each of these autoimmune illnesses and how they continue to manifest. It began with endometriosis at 17 years old, then came along gluten issues, many GI issues, depression, anxiety, chronic fatigue, and body aches, to then be diagnosed later in life with severe fibromyalgia and rheumatoid arthritis and MCTD/overlap. Now each visit something else is brewing. The Sjogren's, the vasculitis, the ever-growing list... I will continue to fight my battles, on my knees. You see, I didn't choose autoimmune illnesses, they chose me, therefore, I must make the world aware of the fight against them, what they do to me, others, and bring awareness.
The journey continues!
Included below are several web links below if you are interested in additional information on Actemra or autoimmune illness: