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Summer, 2002: Same Pain, Other Side

Now I’m no Doctor – Professional Patient, yes, Doctor, no – but I don’t believe that I have a second liver on my left side, but the way I feel today I could convince myself that I do. Some time in the past 48 hours I’ve had almost exactly the same pain in my side – the one that felt like a pipe in my lung – but this time it is my left side that is tender and sore.

So I spent the afternoon at the hospital waiting to explore what might be happening in there. The only real change we have made from the outside in has been to reduce my Prednisone. FYI, Prednisone is a steroid that I am taking – not of the traditional performance enhancing variety – for Graft vs. Host Disease, as it is often quite effective at controlling the GVH symptoms, which for me have been a very little rash, a super dry mouth, some stomach troubles and increased liver functions. I have been on Prednisone for a lot of my past 3 1/2 years actually, and some of that time I actually needed to be on it, however much of it was due to the fact that many Patients have real trouble getting off the drug. I am one of those.

As I understand it when you are taking Prednisone for an extended period of time, like I have been, over 6 months now, your body stops producing Prednisone naturally, which we all do. Then as you drop the dose your body has to pick up the slack, and that can often take quite a lot of time. For example it took me 10 months to get off the last 2.5 mg/day of Prednisone after my first Transplant.

In the past week or so we have continued to drop my dose, from 30 mg/day to 20mg/day and it appears that my body isn’t liking that drop, so I’ll increase the dose for a few days and see how I feel. Assuming things level out I’ll go down to 25 mg/day and we’ll take it slowly from there.

This Prednisone is another one of those necessary evils, as it does great things for me when I have active GVH, but it also is very hard on my muscles and bones, and it suppresses my immune-system making it tougher for me to fight infections. But perhaps the toughest part of Prednisone is the road ahead from here, as getting off the drug proved to be quite a Challenge for me, as my muscles cramped badly and often, and I generally didn’t feel well last time. And this time after Transplant my general feeling on a daily basis has been my biggest surprise as I have had very little in the way of pain and discomfort, on a regular daily basis.

Hopefully we’ll find a good road to lower this Prednisone that will allow for maximum comfort combined with a speedy exit of the drug. I’ll keep you posted as you know, have a good one.

 

Always…
Live Life. Love Life.

Geoff

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