Be a good girl and take your medicine
September 4, 2012 § 9 Comments
I’m not a medical professional, but I’m making the comments here from bitter experience. Once you get on the drugs carousel, it’s hard to get off and by god, that carousel spins you round until you’re dizzy.
I would love to try an alternative to hard core, toxic drugs. People spout the diet route and ‘herbs’. But when I got on this carousel, I was in a very, very bad way. My partner, normally a very optimistic (to the point of being highly annoying) person, said to me that if I’d waited much longer for a diagnosis and treatment, he couldn’t see me getting through it. And…at that time I was on a gluten free, autoimmune diet, just for my IBS. So the drugs may be awful, but the alternative is worse.
So, for your interest and delight, this is my drug regime and my ‘observations’ and associated effects from scans and tests done so far, that the drugs have had on me. It’s scary, but not at all unusual, in fact, Im fairly sure this is par for the course.
Here we go:
Prednisolone (prednisone): Started on 50mg daily for 6 weeks tapering down, currently on 30mg daily
Used to reduce inflammation, suppress immune system
What its done to me:
- Swollen face (moon face or moonpig.com face as I prefer to call it)
- Swollen lump above right clavicle (jury out on if this due to steroid)
- Blurred vision
- Osteopenia of the hips
- Sleep disturbances
- Stomach pain and general indigestion
What I then have to take to counter its effects on the density of my bone calcium:
Aludrenic acid a biphosphonate which can cause oesophageal cancer. It’s a pain to take as needs to be taken with lots of water and you can’t lie down for 2 hours after taking it.
Natecal (Calcium/Vit D) chewy delight
More on the above two treatments for osteoporosis prevention can be found by clicking here
Lansoprazole a proton pump inhibitor to prevent reflux and stomach pain caused by the steroid.
Methotrexate (how I hate this drug): Started on 10mg tapered up to 20mg maintenance dose)
Used to suppress the immune system and as a steroid sparing drug to allow the reduction of the steroid dose
What it does to me:
- Has affected my immune system as expected, e.g. low lymphocyte readings, etc.
- Causes nausea for up to 3 days after taking – it can be mild to severe, I’m hoping go grow to tolerate it more
- Extreme tiredness the day after taking it (I take it in the evening and sleep through some of the effects)
- Headaches for two days after taking
- Thinning of hair
- Metallic taste in mouth
- Night sweats the evening I take it
- Sometimes breathing difficulties the evening I take it (jury is out on if this is the cause)
What I then have to take to counter / check the effects of the methotrexate
I have been having weekly blood tests to check for liver/kidney function and immune system suppression/ infection – thankfully in a few weeks they’ll be monthly.
I also take folic acid (5mg) the day after taking the methotrexate to counter the side effects. More information on the action of folic acid on methotrexate can be found by clicking here.
I am also on a high dose Vitamin D treatment as I have very low levels and most recently I’ve been taking doxycycline (an antibiotic) to see if the swelling above my clavicle is an infection.
I’m on this ride now and I am too scared to come off it because the disease itself is pretty frightening too and I know without these drugs it would engulf me, as it was before I went on them.