Last reply 9 months ago
Hsct third week back.

As promised, an update, walts and all. Ok, lets start with the walts. I returned with steroid phycosis, something i didn’t even knew existed but unfortunately I it does. Not very nice for my family but as it’s phycosis, i was totally unaware. My wife contacted Russia and was dealt with by my doctors. Now for the really bad news. Two people that where undergoing treatment at the same time as me, died in isolation. One a 62 year old man from texas. The other a young lady from Australia, who leaves behind two twins. Its difficult for me now to tell you the pluses. For me and my family, life goes on. Im physically and mentally and emotionally improving by the day. First blood tests all come back positive. I know i can speak on behalf of the two that did not mske it, as we all openly spoke about the risks. And we would all do it again, even if thst might sound ridiculous to some of you. Hope your dealing with the issues ms throws our way the best you can. Paul x

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1 year ago

@paulmorrison , thanks for sharing.

I’ve never heard of Steroid Psychosis. As High Dosage Steroids are the one of the usual medical responses to a relapse, I wonder how many of us are at risk of this. Or would it be because of the amount of Steroids involved over the course of your treatment?

It’s a shame about your two co-patients. Life is a conveyor belt of risks and none of us know when their “number is up”! But, we have to progress, evaluating the risk and reward paradox as we go.

Let’s hope that you continue to go from strength to strength.

1 year ago

Thanks stumbler. I was on two infusions a day for thirty days. I guess thats more than you get for a relapse. Apparently only ten % of hsct patients will get it.

9 months ago

@paulmorrison I’m really saddened to hear of the two patients passing and I hope you have recovered/ing well. May I ask what steroid psychosis is and the side effects, I hope it was easily treatable for you.

9 months ago

Steroid psychosis, effects roughly 10% of people that take steroids in high doses (as you do with hsct) psychosis, basically means an alternative state of reality, some people would say mad, my family and friends would. Personally I enjoyed it, a little like taking LSD!

Unfortunately two people did die, in the insulation period. The statistics for this happening are very low 0.3% but somebody has to fall into that category. I am still in contact with both of the family’s, one from Australia and the other, the USA. Both sets of families although upset at the loss, have no regret.

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