August 2019 – Steroids are my life!

Prednisolone is an amazing drug – just a few mgs a day and the T Cells back off allowing my body to recover from the GVHD.

Amit Khot tells me that all the effects of GVHD are not well known or documented and there are many manifestations which patients describe that are not named or well studied.  The standard response is to ‘hit it’ with Steroids (Prednisolone) and hope for the best.  A blunt instrument but one that seems to work.

Since going back on the steroids I have felt much better and I am now starting the weaning process – slowly reducing the dose every 3-4 weeks.  This will take up to 5 months this time so by the end of the year I may be completely off this drug.

Amit confirmed in my consult this week that taking Steroids will be part of my on-going treatment and this could be for a number of years.  He has patients that are on low doses (1-2mg/day) many years after their initial treatment for Leukaemia.

I have resigned myself to this fact and consider if this is the worst outcome of my recovery I am a lucky man.  The GVHD is not restricting what I do and in the big picture is a small price to pay for a return to health.  I admit it is a little annoying having to take the myriad of other drugs to counterbalance the effects of the steroids but once again a few pills a day is a small price to pay!

Just a few of the drugs that I need to take for the month. Valaciclovir is an anti-viral drug and I take 12 tablets each day.

The lichen planus on my hands has finally started to resolve and my skin is almost back to normal.  And the only other irritation has been GVHD in my mouth with has also developed into Oral Thrush. A few more drugs and this seems to be subsiding!

My blood counts from this week’s tests were all in the normal range.  Hbs 138, Wcc 12.4 Platelets 196, Neutrophils 9.1 and Mg 0.82.  Amit has now put me on monthly blood tests rather than fortnightly – another milestone.

Earlier this month I had a ‘Flexible Cystoscopy’ of my urinary tract (ouch!).  This was to check for lesions in my bladder and urethra as I had been passing blood in my urine from time to time.  Luckily the urologist did not find anything of concern and in fact commented that it was the ‘tidiest’ he had seen in recent times!  This was a big relief as I had feared the worse.  He explained that my prostate gland had developed a slight vascular condition which was contributing to the blood.  In his opinion this was not anything to be concerned about.


So all in all things are moving ahead really well and my recovery is certainly looking very positive.  Amit indicated that apart from dealing with the GVHD issues there should not be any other new issues or matters of concern.

Other Things

We had a couple of days with Claire and Toby at Cape Leveque getting the hang of their camper trailer and we thoroughly enjoyed our subsequent camping trip across Australia travelling from Broome to Melbourne in 2 weeks via Marble Bar and the West MacDonnell Ranges.  Claire, Jan and I were joined by my sister Fiona who is married to Jan’s younger brother Michael (all very close I know!).





img_5918.jpgWe made a quick trip from Alice Springs back to Camperdown in Vic to see Dougall play a game for the Port Fairy Seagulls (est. 1868!)


And back on the farm in Tassie the grass is green and the sheep are happy!