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.

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§ 9 Responses to Be a good girl and take your medicine

  • jillinois says:

    I hear ya… I’ve got something like 24 prescriptions that are either routine (18 of them) or as needed (the other 6). It’s expensive when my prescription plan is in the part when I’m not covered for the insulin. But what do you do? Either treat the disease(s) or they beat you up. 😦

  • jillinois says:

    Even with Obamacare (not popular here) there is NO allowance for prescriptions to be paid for, and the individual states (I live in Illinois) are cutting what help senior citizens are getting to a maximum of FOUR prescriptions. I can’t get out of bed with 4 medications. 😦 I feel for the older folks who are on a worse income than I am with disability. They have to chose between medication and food- and many end up in nursing homes- that the state pays MUCH more to keep them in. Our government doesn’t have one brain between them all. If they got help with all of their medication, and someone to see in on them now and then, they could stay in their own homes. Such a mess.

    • susiemorrow says:

      I can’t get my head around how a country could not have basic health care cover for all citizens, I mean what happens if you need to see a doctor? Do you pay? What if you haven’t got any money to pay? I can’t understand how it can work and not end up with lots of very sick people or dead people? And what about children – do they get free health care? In the UK all children and pregnant mothers and people over (I think 65) get free everything including all prescriptions. In fact if you’re on benefits you get free prescriptions too, its only because I work (well normally) I pay for those (which is fine by me)

    • susiemorrow says:

      Its crazy – I have to say the NHS is fabulous but its being broken down and it scares me that we may loose it – saying that it has pockets of crazy too – we have to wait often long times for referrals and scans and things, meaning people get more sick and the cost spirals. And again it all depends on where in the country you live. Im lucky as I live near the largest teaching hospital in the UK (europe I think) and its extremely good. Thing is, people don’t realise how much they need good, accessible health care, until they actually need it -I didn’t.

      • jillinois says:

        Yeah, I sort of took my health for granted even when I already knew about the epilepsy. As I got older, I ended up getting disability insurance (pays more than just Social Security- but is an add-on, not a replacement). I saw so many tragic situations as a nurse that it scared me into insuring myself more and more. Then I got to the point of having to go on disability, and I never thought I’d have to stop working for something besides a car wreck or something. I figured I’d be able to just ‘make’ myself keep working. Can’t do that unconscious (dysautonomia does that). Then I really learned how messed up our medical care is here. WHen I took care of patients, I didn’t know if they were public aid (Medicaid), Medicare, private insurance (through employers), or private pay (just pay everything out of pocket). It didn’t matter to me. But it mattered that I couldn’t get help when I needed it. I learned more than I wanted to know. :/

  • jillinois says:

    There are programs for children that can’t get insurance through their parents’ work (that’s how we get our insurance- it’s a benefit of our employer). There is Medicaid- which is for poor people. But it’s incomplete.

    Medicare (for senior citizens and the disabled- which I get) is also incomplete. My dad paid my recent dental bills, which I’m thankful for, but really hate that I can’t take care of my own.

    What happens is that many people go to the emergency room for routine medical care OR when they are so sick that it costs a fortune to treat them. Emergency rooms are not allowed to turn away truly ill people, regardless of the ability to pay- so what happens is the hospitals lose money, and have to charge those WITH insurance a higher rate.

    But, if I have a medical concern and talk to my doctor, I can get an MRI before the end of the week. If I go to the ER, I can have any medical test the ER doc sees fit to do, and there’s no wait. With my leukemia, I’ve never had to wait for any tests, chemo, or appointments. That is one good thing.

    There are pluses to both-but I do agree, medical care shouldn’t be a privilege; when I didn’t have Medicare (takes 2 full years ON disability to be eligible, which makes no sense- I was on disability because of medical problems) I ended up having to file bankruptcy. That was lousy. It was all because of medical bills- no frivolous spending. I felt so worthless because I couldn’t pay the bills…. but I still got care- so the hospitals suffer the most.

  • malcolm says:

    Cripes Sus! Where do you fit in a sensible meal? You would be full by the time you have all the meds in you,

    Like Suz said: you are your own walking HazChem zone!

    Keep it up both of you

    • susiemorrow says:

      Crazy isn’t it, there’s apparently research going on into using hook worms to ‘reset’ your immune system. Sounds drastic, consuming parasitic worms, but is it any more drastic than taking toxic chemicals – me thinks not…maybe that’ll be my next step…bit of worm with your muesli madam?

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