Picture by the Author. These are my actual pill trays and various prescription bottles.
As a person with Lupus (specifically Systemic Lupus Erythematosus or SLE), I would say the most depressing thing I do is laying out my pill trays monthly with my medications. The actual action of doing it is not the problem. Its the constant rehash of what each is for and taking so many for so many years.
I write this piece for informative purposes. To help people understand more about SLE and to appreciate what people they may know with SLE experience. And for those with SLE an opportunity to relate.
My Medications Story
I currently take anywhere between 7 and 10 different prescription medications per day. This actually an improvement from 12 in prior years!
3 of 10 are "take as needed". These are a pain killer (pill), pain killer (prescription compound cream), and a muscle relaxer (to help me sleep).
Most are taken twice daily and include a maintenance chemotherapy drug, 2 nerve suppressant drugs, heart medication, an anti-malarial, corticosteroid, and a digestive medication.
No anti-depressants (believe it or not, right?). Although one would be welcome after typing all this.
Why So Many?
Well 3 of the medications are targeted solely at keeping my Lupus under control or in remission in an effort to ward off life threatening organ damage. Since Lupus is Latin for wolf, envision those medications being the cage that keeps the wolf from attacking me.
Although from time to time the wolf still takes a swipe at me or escapes even when I take my medications as directed. That can prompt the need for dosage increases or new medications.
Picture by Tahoe
The 2 nerve suppressants are to help me "live the best life I can" (as my Rheumatologist said) by managing the pain throughout my body.
The worst of the pain is sporadic and severe nerve pain. My Neurologist said it is unexplained peripheral neuropathy that is common among most Lupus patients he sees. For me it’s like being stung by a bee or bitten by a fire ant out of nowhere in your hand, back, head, or feet. You even get startled and look or feel quickly as though there was a true venomous bite by an insect. And as quickly as it happens, its gone within seconds to minutes.
I also experience strange sensations as though someone is pouring a cup of water over your head, arm, or leg. Once again nothing there, no logical reason for the feeling. More annoying and distracting than anything and makes you feel like you are going crazy at times.
The heart medication is for tachycardia. My cardiologist is unsure if I was simply born with a high heart rate or its inflammation of the heart muscle or sac as a result of my Lupus. Since Lupus inflammation can be a moving target, there's no visual evidence of inflammation at this time and its based on hypothesis related to symptoms, pulse logs, and history.
The digestive medication helps me because my Lupus frequently targets my digestive tract with unexplained inflammation in the form of gastritis or colitis.
For the acute pain caused from damage to my various joints, I utilize the prescription pain medication and prescription compound cream. I resist taking the pain medication as much as possible given its an opioid and the addiction and/or stigma that could come from that. The cream is a mix of many different pain medications and Lidocaine which is most helpful for joints like my knees, elbows, and knuckles.
Oh yes, there are side effects and dangers as some of my medications are toxic and three are addictive. Of course with side effects, the chances can be remote or low percentage. I won't share them all of course and bore you, but these are some of the more eye catching ones...
Maintenance Chemotherapy Medication...
- Megaloblastic Anemia
- Type Of Blood Disorder With A Decrease In All Types Of Blood Cells Called Pancytopenia
- Type Of Inflammation Of The Lung Called Interstitial Pneumonitis
- Abnormal Liver Function Tests
- Acute Inflammation Of The Pancreas
- Acute Myeloid Leukemia, A Type Of Blood Cancer
- Hepatic Veno-Occlusive Disease, A Type Of Liver Disease
- Hepatosplenic T-Cell Lymphoma
- Inflammation Of The Liver Called Hepatitis
- Malignant Lymphoma
- Overactive Macrophage Immune Cells
- Progressive Multifocal Leukoencephalopathy, A Type Of Brain Infection
- Sweet's Disease
- Disorder Of The Retina Of The Eye
- Abnormal Function Of The Cornea In The Eye
- Corneal Opacity, A Scarring Disorder That Results In Clouding Of The Cornea Of The Eye
- Aggression, agitation, irritability
- Bone fractures
- Swelling of the fingers, hands, feet, or lower legs
- Numbness or tingling in the arms or legs
- Puffy Face From Water Retention
- Shortness of breath
- Trouble thinking, speaking, or walking
- Weight gain
- Abnormal Bleeding
- Chest pain
- High Blood Pressure
- Liver dysfunction
- Muscle aches, twitching or jerking, or weakness
- Puffy Face From Water Retention
- Neuropathy, ataxia, vertigo, incoordination, tremor, abnormal gait, headache, speech disorder, twitching
Do I think I have or will get all those? No of course not. But the hard part with having Lupus is that so many things are happening and causing pain daily, how would I even know what causes what?
Picture by Brianna R.
So the other scary part of all this is that the 2 nerve suppressants are highly addictive. I learned this the hard way when I forgot to refill a prescription and did not notice that my pill trays were missing the morning and evening pills. I've done this twice now in the last 6 months. Had my mind on work and holidays I guess and wasn't paying good attention.
Let me tell you, I will never doubt what people in withdrawal go through ever again. It was rough and I'm not even sure how bad it compares to what others go through. I didn't know what was happening to me. First I thought it was a Lupus flare, but I knew it was different. Intense headaches, intermittent sweats and chills, intense muscle pain, zero appetite, and nausea. Finally about 2 weeks after last dosage I realized the pills were missing and within 3 days of restarting I was better.
Thanks for reading my article about Lupus and hearing my story.
I plan my next Lupus articles to be…
- Life With Lupus: Mortality
- Life With Lupus: Perhaps I'm A Better Man...Make That WolfMan?
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