Addisons patient description of self-treatment

[Guest guest]

Here is the description from my friend with s who is self-

medicating for the most part, if you are interested.

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I initially started off on 25mg hydrocortisone and 0.1mg

Fludrocortisone. However, after a few weeks of feeling great I felt

that some of my illness seemed to have crept back. Cramps had

returned on almost a nightly basis. I was putting on weight like

crazy, and I even started getting night sweats again, although the

sweat was now stinky whereas it had no smell prior to my diagnosis.

I first tried increasing my medication, but this made things worse.

After reducing medication, things improved.

With a bit of experimentation I found that I functioned best on what

was considered by the endocrinologists as " very low doses " . Between

1999 and October 2002 I took 7.5mg hydrocortisone in the morning and

1mg prednisone in the evening (around 12 mg equivalent

hydrocortisone). This is considered a very low replacement dose and

extra care is required on these low levels.

I now take 7.5mg hydrocortisone with breakfast at around 7.30am each

morning and 2.5mg hydrocortisone and 1mg prednisone with dinner

around 6.30pm. The prednisone means that I do not run out of cortisol

in my body during the early morning hours and I tend to sleep better -

not perfectly, but better than when I took only hydrocortisone in

the evening. Prednisone is longer acting - at around 18-24 hours

half-life compared with hydrocortisone at 4-6 hours half-life, so you

tend not to " run out of gas " as easily. I normally go to bed around

10pm and wake around 6.45am.

I am very careful to take extra medication if I feel in any way

sluggish or unwell. For me, the indicator is often a mild headache,

particularly in the late afternoon. I take an extra 2.5mg for this -

as soon as I feel like a headache is coming on. If I am feeling

quite unlike doing anything at all, I would tend to take an extra

5mg. It is amazing how often taking additional medication will

change the way you feel and restore your wellbeing. I feel that I

am merely doing exactly what my body would be doing (i.e. producing

extra cortisol) under the same circumstances.

How often do I increase my medication? There is no real pattern

here. Sometimes I can go for several weeks without increasing my dose

at all. Other weeks (if I have been more active or more stressed

perhaps) I will be reaching for an extra 1/2 pill every day. I know

that I can't easily overdose on my replacement levels so I don't have

any issue with taking extra medication to feel better.

I will increase my hydrocortisone with a cold - 10mg instead of 7.5mg

in the morning and 5mg instead of 2.5mg in the evening. I have not

had the flu in a long time, but I would at least double my normal

medication under these circumstances.

A headache and lethargy in the evening is normally a check on whether

I had my pills with the evening meal. Forgetting my pills never

happens with normal routine, but rather, when we have people over for

dinner or we've been out for dinner. This is when I most need the

hydrocortisone!

I will normally increase my dose slightly if know I am going to be

particularly active that day. If it isn't possible in advance, then

it is possible after the event.

It is important to get the doctor to prescribe more medication than

what you normally take . This way there will always be some

medication in reserve during the 90 day prescription period. Doctors

may not like doing this, but I remind them that it is important to

have extra medication if you are unwell.

I take 0.1mg Fludrocortisone daily. I have tried increasing and

decreasing this dose. I seem to get by all right on 0.05mg, but this

is probably too low for replacement based on the international

evidence for my body weight. I do not feel well on a higher dose. I

find it hard to describe exactly how I feel with the higher dose, but

it is a general unpleasant feeling and minor discomfort around my

kidneys. It also tends to increase my blood pressure.

I am about to head overseas for a break to see my sister in Italy. I

will be spending two days in Bangkok on the way over, and a few days

in Chiang Mai on the way back and I will be conscious of the need to

increase my fludrocortisone slightly (a day or two in advance) in

order to cope with the heat and all the walking you do when exploring

a city at the same time as coping with jet lag. I will take an extra

half tablet each day. For the short time I am there, there will be

no risk of feeling unwell from overdosing on the fludrocortisone.

It's my theory that with prednisone you actually need slightly less

medication overall because you have eliminated the bad troughs.

Natural cortisol production doesn't lead to those troughs - our

bodies would normally secrete the cortisol to maintain a minimal

level at all times. This only works of course if one takes a mix of

cortisol and prednisone. And it is just a theory based on my own

subjective judgements with trying swapping it in and out.

Differences won't show up on day 1 - but should be noticeable after

about a week.