Living with Scleroderma

this is nothing but a curve ball

Complication with the Medication

I was thinking of a good introduction for this post. I realized a “hello!” would sound quite inappropriate considering I’m not in the most socializing mood at the moment and a “hello” definitely feels like a conversation starter.

I’m not usually in a mood like this but today hasn’t been the best. Please don’t think this is my norm, because I’m usually a pretty friendly person.  It’s just that this just happens to be “not” the best of days for me.

Overall, I’ve been feeling more and more tired lately. I pretty much spend a majority of my days in bed, either sleeping or resting or if I’m lucky, I get enough energy to get some “productive” activity like writing or making something creative.

I saw my rheumatologist the other day and asked if there is anything that can be done. She mentioned a particular vitamin that “may” give me a boost, but, considering my “scleroderma, fibromyalgia and everything else going on” in me, it “might not” make much difference. *sigh*

We also spoke about the frequency, dosage and current positive effects of my current mess. I take so much medication that it’s so hard to know which ones work and which ones don’t. 

It turns out that some meds barely work better if you take a slightly higher dosage so it might be to my favor to take less, just to lessen side effects. 

Upon reading the side effects of my medications, there are quite an extensive list of side effects that I experience.

Cellcept (immunosuppressant): weakness, tingling sensation, anxiety, insomnia, headache, swelling in hands and feet and memory loss

Dexilant (treats GERD): muscle weakness, jittery feeling, dizziness, confusion, muscle cramps

Ranitidine (prevent ulcers in the stomach): bleeds easily, vision problems, unusual weakness, headache, drowsiness, dizziness, insomnia 

Effexor (for fibromyalgia): drowsiness, dizziness, dry mouth, feeling nervous, strange dreams, increased sweating, blurred vision

Benzonatate (for coughing and asthma): drowsiness, skin itching

Sildenafil (increases blood flow): tiredness, weakness, changes in vision, twitching of muscles, swelling of face, hands, legs and feet, shakiness, painful swollen joints, nervousness, numbness of hands, sensitivity to light, restless sleep, itching, dizziness, confusion, anxiety, difficulty in concentrating, dry mouth, increased appetite

Singulair (prevents asthma and allergies) tiredness, tingling feeling, headache

Domperidone (aids in moving food through the digestive system): headache, dizziness, hot flashes, leg cramps, dry mouth 

Prednisone (anti inflammatory): changes in appetite, sleeplessness, lower back pain, sweating, tiredness, weakness, vision changes, sweating, irritability, dizziness, headache

Xifaxan (antibiotic): bloating, headache, dizziness and tiredness

Dulera (anti inflammatory): unusual weakness, tiredness, headache, muscle aches.

You may be wondering why I’m still taking these medications if I have all these side effects. 

I have to admit, I’d rather not experience them, but I would choose these as opposed to my Scleroderma, Fibromyalgia and Pulmonary Hypertension progressing faster.

I wondered why all these medication have side effects. And why can’t there be any medicine with no side effects? 

Then I realized,these medicines are man made. They were formulated to try to fix what’s going inside us but they may also contain substances that affect the rest of our bodies.

I sometimes wish that there was a perfect medication to just treat my symptoms without any side effects.  

Then, I remember the bigger picture and the reason why I’m taking these drugs in the first place…

To try to prolong my life…

And for that, I’m grateful!