Another setback

Last week's blood test result - 46. This week's blood test result,
which I got yesterday was - not 60 or even 50, as I'd modestly
hoped, but - 12. 46 was certainly not as great as I'd hoped, but it
was pretty OK, and definitely out of the danger zone. 12 is back in
scary territory!

In other words, although the steroid pulse my doctor and I did 10
days ago had definitely worked - a jump of 34 - it hadn't held once
I was on 5mg for a week. I'd lost everything I'd gained, while
putting up with all the usual unpleasant side-effects of a relatively
high steroid dose. 

So we're trying the pulse again - this time over  a longer period.  I started on 25mg last night and will take that for three nights, then on to 15 mg until I see my doctor again after next week's blood test. If the results are encouraging, we'll drop down to 10 mg for some days. It will beabout three weeks before we get back to 5mg, and  only if my platelets are much higher than 46.

As well as being under 'house arrest' again for at least until next
week's blood test, I can look forward to three weeks of increasing
discomfort from the horrible steroid side-effects.

Steroid side-effects

If you've never been on high steroid doses this is what I and many
others experience: sudden drops in energy, shakiness, palpitations,
indigestion and belching, pain in the oesophagus that feels like a
knife stuck through me, disrupted sleep - waking up and being
unable to get back to sleep because your mind is spinning with
thoughts. Not exactly fun!

Brain fog

Both my doctor and I hope I won't be on the higher doses for so
long that they affect my adrenals and produce the dreaded brain
fog.

Brain fog is similar to what many people receiving chemo for cancer develop.  Your brain feels full of cottonwool or thick fog; your neural synapses seem sluggish or unwilling to fire. It is debilitating and depressing to be unable to think clearly; often it affects your ability to make sense of what you're reading.

Damage to the adrenals also leads to fatigue. So it's no wonder I'm
feeling a wee bit down this week!

At the moment, my adrenals are coping and thank goodness my
brain is only a tiny bit slower, so I can still work effectively.

Always look on the bright side of life

I've been through all this before, but thankfully not for quite a
while. And each time, I've bounced back and my brain has returned
to action. So far this year I've been remarkably well, and for much
of last year, apart from debilitating migraines in summer. In fact,
the problem seems to be that I'm just too healthy! Even spending
three weeks in Boston in the spring sunshine and coming back to
winter in May didn't cause any health problems, if I ignore my
immune system munching up my platelets faster than my bone
marrow can make them.

And although my doctor telling me the bad news threw me a few
minutes of teary anger, I walked out of her surgery laughing. I said
I was heading to the nearest café for a restorative coffee and how
glad I was that coffee protects the liver against  steroid by-products. Shetold me about a patient going for a coffee enema to  detox,
who was surprised she was buzzing for 48 hours after. Yikes!! I'll
take my coffee orally, thanks!

A Respite Phase?

For the past 6 weeks or so I have been feeling pretty good, despite being “a magnet for colds and flu”, according to my GP, because some of my immune system markers, the immunoglobulin subclasses Ig1 and Ig2 are still very low. Ig3 and Ig4 are somewhat low, but within the range, so they’re not a worry.

My cortisol levels are still alarmingly low at almost a quarter of the expected baseline level. The adrenal glands and pituitary gland are still not functioning properly. So you would expect me to be feeling slow in the mornings, and with the low immune system, liable to catch whatever is going around in the way of germs.

Not so! I’ve been remarkably well. So well that when I visited friends and family in Melbourne and Tasmania, I sensed a little disappointment that I didn’t look like I was at death’s door, as some had expected. I assured them that I HAD been at death’s door, especially when I’d had to rush to the emergency room during February’s heatwave, when a combination of heat exhaustion and crashing nausea from migraines made me very sick indeed.

But I’ve been delighted to be feeling so bright and energetic, as it meant I could finally take my brief interstate holiday, and enjoy catching up with my son and daughter-outlaw and my three gorgeous grand-daughters, other relatives and many friends, as well as the perfect autumn weather. I always feel much better when the sun is shining! I came back exhausted from so much pleasurable activity, and was surprised to find my platelets had doubled from 45 to 93, quite high for me. On the strength of that bounce, and my continuing good health, we reduced my steroids by .5mg to 3.5mg daily.

Cordyceps works – at least for me

I’ve been taking the Chinese fungal preparation, cordyceps sinensis at the rate of two 500mg tablets each morning, for the past four months. It’s been clear for at least two months that this is assisting me to maintain good energy levels despite my poorly functioning adrenals and pituitary gland, and it may also be improving my immune function.

Whether I will need to continue taking cordyceps after I’m finally weaned off the prednisone is not yet clear, but I’m happy to keep taking it, as I’ve had no adverse reactions to it, and some definitely positive effects. Without it, I think I would be far less chirpy than I am!

Weaning the prednisone – what’s ahead?

Not surprisingly, I’ve been really enjoying this sense of well-being, and of feeling that I’m almost ‘back to normal’. But what is ‘normal’ for me in this new situation of learning to live with chronic illness? Both my GP and my psychologist have warned me I will likely have setbacks – that I won’t always feel as good as I do now.

The psych gave me some very good advice, which I’m applying by writing this blog. He suggested I write a note to myself – from my well self to my unwell self. It’s to be read when I hit a setback, reminding myself that I’ve been ill before – several times during this past 18 months – and that I’ve got better, and even bounced back. That no phase is permanent – nothing in life is permanent, but just as there will be bad times with my health, so there will be good times again. The whole series of posts in this irregular blog will show me that!

Even now, in dropping the pred down to 3.5mg, I’ve had a little bit of an adverse reaction. Not immediately, but after a couple of days. I started to feel a touch shaky in the mornings, slower to get started, and at night, brief palpitations on going to bed. For two days in a row I had very little energy, and spent the afternoon of one day, and the whole of the next reading and knitting. Thank goodness for beautiful autumn sunshine – I was able to ‘convalesce’ in a comfy chair on my balcony soaking up the rays, surrounded by my plants.

On the bright side

The autumn sunshine finally induced my nasturtiums to bloom, so there were bright yellow and orange flowers to greet me when I came back from my holiday. All the herbs on my balcony are doing well – I can pick rocket, chives and parsley every day for a bit of fresh green life, the oregano and everlasting basil ares still going strong and the rosemary bush has started to show tiny mauve flowers. What a joy even a tiny garden can be!

Up and down – life on a see-saw

Well, it’s been 2 months since I last reported in this blog, and I have to say it’s been a very confusing (and somewhat depressing) period.

My last post was full of energy and optimism, even though I admitted I knew I wasn’t cured. Since then I’ve been on a see-saw, with my platelets up one week and down the next. After the magnificent 233 I had following the horrendous gastric flu back in October, they settled back down to a normal (for me) 50-60 range for a few weeks.

But once we dropped the steroids down to the borderline 5mg/day, early in December, the platelets grew skittish. Down to 25 just before Christmas, so that was Christmas and New Year wiped out, back up to 46, and then just as I was about to go interstate for a week to see my son and family in Melbourne, and my sister and friends in Tasmania, they plunged to 31. So that was the end of that little holiday!

Because of course, it isn’t just that my platelets are low. Because my pituitary is still not working properly, my cortisol readings are also way down at 50 (when they should be at 150+). Low cortisol means low energy (some days none at all), and little or no brain power. It’s back to the couch, and there isn’t even any Test cricket to watch!

As well as the platelets and the cortisol deficits, all the B cells and T cells and other components of my immune system are way out of whack too, so I have little resistance to any nasty viruses or bacteria floating around. Both Sydney and Melbourne are suffering from epidemics of whooping cough, and having had it as a child many years ago doesn’t confer the immunity I thought it would. Whooping cough immunity only lasts about 10 years, and teenagers are now given booster shots, and adults when they start families. Some medical practitioners, including my doctor, also re-immunise grandparents. Of course, I’m not well enough to risk having a ‘grandma booster shot’, so I just have to be careful – especially in doctors’ waiting rooms where there are small children!

Cordyceps – will it make a difference?

I’m very fortunate that my doctor is both a western medicine-trained GP and a fully trained Traditional Chinese Medicine (TCM) practitioner. In the past, she has prescribed mixtures of Chinese herbs to help my body cope with the effects on various organs and systems of high levels of prednisolone. Once we got down to 6mg/day, we were able to discontinue these herbs, and just supplement with daily folinic acid and vitamin B12.

However, since my adrenal glands are not recovering as fast as they should to the lower steroid dose, as shown by my poor cortisol levels, we are trying the Chinese fungal treatment cordyceps along side my other supplements. Although there are no large scale, double blind studies to show whether cordyceps works to assist the adrenals, there have been small scale trials that showed good results, and the fungus has a long association in TCM with improved chi (energy). Like all herbal treatments, it will take some time to show any results, but we should have some idea after I complete a month on it.

On the bright side

On the days when I have energy and brain power, I have the urge to write. I’ve started working on a couple of new short stories, as well as researching and writing little bits of my next novel/short story collection. My doctor is encouraging me in this effort, as opposed to looking for more income-earning writing which I might not be able to complete, as my energy drops off. When I’m working creatively, the emotional energy I get feeds back into my body, with physiological and psychological benefits, where chasing income opportunities depresses me.

The other good thing about this whole period of readjustment is trying out new recipes for my very low carb diet. On the days that I have any mental and physical energy, it’s fun looking up new ways to cook otherwise bland and boring tofu, or ways to create low-carb AND gluten-free desserts and cookies.