T + 379 I'm not an addict.....

By -
.....I can give up any time I like" as the old government anti-drugs campaign used to say.

I've had another bad week with fatigue and nausea to the point that for large parts of the day I've been hors de combat and certainly not up to logging on to work. I was due to go to the transplant clinic next week but called yesterday to get the appointment brought forward.

I saw one of the registrars who was very nice and she confirmed my suspicions that the cause of my problems is mostly likely steroid withdrawal. Unfortunately at this stage the only treatment is to go back to a higher dose of steroids to get the corticosteroids flowing again as my adrenal glands have decided to take a holiday as they think they are no longer needed.

This is a bit frustrating as this current tapering regime seemed to be working well and I have only had one small outbreak of my GVHD rash that a couple of days of topical betnovate cream sorted.

The doctor said that it is possible to become dependent upon steroids and then the tapering and withdrawal has to be done even more carefully. In really bad cases the dependency has to be treated by an endocrinologist who uses cortisone and other drugs to aid the weening process.

Hopefully it won't come to that.

I'm currently on 2.5mg every day of prednisone but will now increase that back to 2.5mg one day and 5mg the next. If I improve on that then the aim is to taper even slower and go to 2.5mg for two days then 5mg and so on , going longer and longer between 5mg . It's going to take a while to get off them at that rate but it maybe the only way.

I'm due back at clinic next week to see how I am getting on but in the meantime I've been signed off work for two weeks whilst I try and adjust.

Comments

Post a Comment

Popular posts from this blog

T + 188 Hackery, Bakery, Accident and Emergency

By -
Quite an eventful weekend by my standards these days. My energy levels have been improving over the days. On Saturday the creative muse struck me and I wrote the first draft of a 3600 word short story ( one sense of hackery ). It needs to be revised and edited but when I am happy with it I will prolly stick it up on a site like ABC Tales  like my friend Andy has done . Then you can chose to read or ignore at your leisure. Writing this was a good measure of my general energy as , with breaks, I worked on it for about six hours starting Saturday afternoon and didn't feel too bad. Indeed I have logged on and done a full day's work today and been quite busy. Feeling a bit tired now but not too bad. On Sunday Gareth did some bakery as is his wont these days and I did some hackery ( in the other sense ) trying to create a Mac OS X DVD so Gareth can install it on his EEE PC and make it a hackintosh . Sadly it wasn't successful :o( The Accident and Emergency bit relates to my Mom w...
Read more

Bright Eyes......... (PG)

By -
.......and no longer " burning like fire ". The chloramphenicol drops have cleared up my conjunctivitis again and I'm just finishing off the course of drops today. I've stayed off the computer pretty much over the last three days to help my dry eye syndrome as well. That has been quite bad in my right despite using the artificial tears regularly. The problem is, as it always has been, at night. As soon as I move my right eye under the lid in the morning, never mind actually open it, I get a sharp pain in it like someone has poked me in the eye. What has actually happened is that the surface of my eye is dry and the base epithelial layer of the cornea breaks down and gets ripped off by my lid. Yes it is as painful as it sounds. The pain subsides after an hour or so and generally it is ok for the rest of the day. What's worse than the early morning wake up poke in the eye is if I wake in the middle of the night for some reason. It takes me a while to get back off ...
Read more

Rinse and Repeat

By -
I 'phoned the ward at 09:15 this morning expecting to be told to at least call back after 12:00 when the docs had done their rounds, but the bed was all ready for me and I was asked to get here for about 11:00 I am now back in room 6 but bed 8 this time. Only one bed in this room I haven't been in. Wonder if I get nectar points when I complete the set? There are a couple of familiar faces on the ward so we have been catching up with where we are with treatments etc. This round of chemo is a repeat of the first one I had at the end of March so hopefully I know what to expect. The first job will be to get a line in of some sort. Though I am now a priority for a hickman line they are talking about a PICC line again to start at least. -- http://raetsel.wordpress.com
Read more