I am getting ready to begin a series of treatments again along with a low dose chemo. I am constantly asked questions about why and what this means.... So I'm typing this blog to be informative and hopefully helpful to my many friends and family.
The first is the infusion treatment Benlysta. It is a prescription medication used to treat adults with active systemic lupus erythematosus (SLE or lupus) who are receiving other lupus medicines.
BENLYSTA can cause serious side effects. Some of these side effects may cause death. It is not known if BENLYSTA causes these serious side effects. Symptoms can include fever, chills, pain or burning with urination, urinating often, bloody diarrhea, or coughing up mucus.
Heart Problems: Symptoms can include chest discomfort or pain, shortness of breath, cold sweats, nausea, dizziness, or discomfort in other areas of the upper body.
Mental health problems and suicide: Symptoms can include thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety, new or worse depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others.
Sound like fun yet??! Lol
Next is questions on chemo....
It surprises a lot of people that I am on low dose chemo when I don't have cancer, when I actually have lupus, so here is some research I did to help explain.
But lupus isn’t cancer, right?
No, lupus is not cancer. Lupus can predispose a person to develop certain cancers, but it is not itself any form of cancer. So why do we take chemo? The answer is that we basically take it for the side-effects. When a cancer patient takes chemo, one of the side-effects of the treatment is that (s)he becomes very immunocompromised. The chemo “accidentally” kills cells in the immune system while killing cancer cells; it’s a form of chemical friendly fire. This is why cancer patients tend to be very careful about crowds, and will wear face-masks if necessary to avoid infections. Lupus patients, on the other hand, need our immune systems to be shut down, since the immune system is responsible for our disease.
How does chemo help treat lupus symptoms?
What many people don’t realize is that chemo drugs generally don’t target any specific kind of cell. There are certainly exceptions, but most of the time the chemo is a wide-spectrum poison that kills any rapidly dividing/growing cells. Since many cancers grow much more quickly than most healthy tissue in the body, this strategy can be highly successful in treating cancer. Unfortunately, cancerous cells aren’t the only quick-growing cells in the body, and other quickly growing cells will also be killed by chemo. The idea is to give a patient enough chemo to kill cancerous cells, but not so much that it kills the patient. As it turns out, the cells in the immune system are some of the most quickly growing cells in the body, so they are hit hard by chemo drugs. So for those of us whose immune systems are overactive, chemo can help kill off enough immune cells to help improve our
symptoms.
Do lupus patients on chemo have the same side-effects?
This really varies from person to person. In general, lupus patients take a lower dose of a chemo drug than a cancer patient would, so the side-effects tend to be less severe. That being said, yes, most of us experience some degree of nausea, headaches, mouth sores and often hair loss. The symptoms are there, but they aren’t (again, generally) as severe. Side-effects from chemo occur because other rapidly-dividing cells, such as the cells that line the mouth and GI tract, are killed. Chemo is not a very specific tool, which is why the approval of new, more targeted, lupus drugs is so exciting. (Depends on the dose mine is on the high end so my symptoms are pretty severe)
How long are lupus patients on chemo?
Cancer patients are often given a defined schedule of chemo treatments. They may, for example, have to receive an infusion of chemo once every other week for two months. Lupus patients, on the other hand, very rarely have a defined schedule. We don’t get told to come in for two months. It is not uncommon for a patient to stay on a particular chemo drug until the body builds up resistance to it. So we don’t know how long we will be on chemo, but it’s likely to be months or even years. This is only possible because the dose given to lupus patients is significantly less than that given to cancer patients.
Immunosuppressives/Cytotoxic Drugs (Chemotherapy) -
Drugs that suppress the body's immune response are a common treatment for life threatening Lupus. These drugs are also known as cytotoxic drugs or chemotherapy. Cytoxic means "toxic to cells". Cytotoxic drugs are just that, they destroy cells. The medications listed below specifically destroy immune system cells. Because they don't only destroy the "bad" cells, these medications can come with serious side effects. These medications are not for mild Lupus but can be very useful in life threatening SLE. They are also steroid sparring medications. Blood counts should be monitored while on these medications as low blood counts are a common and dangerous side effect. These medications may reduce your body's ability to fight infections so contact your doctor if you experience fever, chills, swollen glands, etc.
Benefits
One of the best benefits of chemotherapy for illnesses such as lupus is that the dosage of chemotherapy used is much less than the dose for cancer treatment. This type of treatment takes longer than other treatments do but, in the end, has a longer-lasting effect. In some cases, it stops lupus altogether.
Warning
Types
While there are a great deal of chemotherapy drugs on the market today that can be used to treat such conditions as lupus, some have been known to work best: azathioprine, cyclophosphamide, lefunomide, methotrexate and mycophenolate. Some of the brand names of these are Arava, Cytoxan, Rheumatrex, Imuran and CellCept.
I currently take methotrexate and CellCept. Along with high doses of prednisone for my sickly lungs.
I truly hope this was informative. I am always open to trying and answering questions on the spot. Lately I feel people are on my case more for "not taking it easy"..... I know it's meant we'll but Its depressing to be home on the couch all the time. I take injections for antidepressants as well weekly .
Wanting to help? I seek your prayers for myself and my family. This is a log and trying process for us all. This is my third round, third times the winner right?! Thanks for reading and thanks for caring!!!!
