BLOG 66

10th December 2022

Over time, we've had to reduce my steroids - this is because long term use, have caused more health issues and especially Osteoporosis.

Because of this - we went from 10mg to 5mg dialy and currently I am at 4mg. As a result, I am now feeling the stronger effects of my severe GVHD. My eyes are difficult to see through and by the end of the night - it feels like someone has poured sand in my eyes. I have to get Greg & the girls to read for me. Then my mouth ulcers very easily - when going to my specialist GVHD dentist the other day - she was showing her dental assistant the dryness in my mouth and said, rather than a mouth with normal saliva, it looked like gladwrap, like plastic - it was so dry. She has been seeing me for 5 years and said this was the worst she had seen my mouth. So, we have upped one of my other GVHD drugs to try and avoid going backwards, in our plans to get rid of steroids altogether.

I had started taking a new drug called Ibrutinib - and this is to try and replace my steroids eventually. Unfortunately, it eventually gave me a rare side effect, called 'Panniculitis'. This was small lumps under the skin of subcutaneous fat. They are sore and also cause fevers, which in turn caused muscle aching.

We turned to Dermatology - who have indicated that I need a liquid version of potassium Iodide - in which I was reassured was foul tasting. After investigation, I was advised that even though tablets were available, I would have to take the liquid. However, I only found out later that the Potassim Iodide did not work very well. My Haematologist has advised that maybe taking another med, to wipe away the side effects for a new medication, sounds like a waste of time. Seeing as I am fairly stable on 4mg - maybe I should stay here? Or at least try to go down to 3mg and see where this leads me, with my GVHD, we are still deciding. As I have mentioned before, I sometimes seem to be an attracter of rare diseases or conditions. But I am still smiling and am a happy person - regardless of my ongoing suffering,

On 10mg of Prednisolone - or 'Pred' as us BMT people call it - I had got up to a large size and had alot of fluid. But, on the low down towards, much less Pred, I have slowly lost 20 kg's, which is 40 lbs and already, I have noticed a reduction in the puffiness of my face, the lack of swelling in my lower limbs and my weight going down slowly. Prayers up to our Lord. I may get a place on a trial for a new way of removing the ability of my donors T-cells to be nasty and attack my own cells, which is why I get severe GVHD. It’s a big fight over power, which is why I must be made immunosuppressed to stop the donors' cells from winning and killing me. I plan on winning this fight.

​Thank you for reading,

Much Love,

Jodie & The Guerrero Family xx