It's a rollercoaster

It's been a month, so time for an update. At my last post my count had gradually increased to 32 and i was happy to be coming off the prednisolone (it wasn't having much effect). I had a two week trip to The USA coming up followed by a week in Switzerland, and it looked like this might be possible. The next count was 28, a bit lower nut not significantly so and everything seemed ok. Then I started to get really tired and bad headaches, and ten days ago, one week before I was due to fly to the US, my count was 13. The Haemotologist wanted to start me on a new treatment (ritiximab) but couldn't do that if I wasn't going to be in the country, so she suggested we increase the prednisolone back up to 30mg and hope it had some effect so I could still travel. I had a week of exhaustion, headaches , and a cold, and was pretty depressed, I went for another blood test, and my count had gone up to 62??.

So I'm sat in California writing this and feeling 100x better than i did last week mentally and physically. This is a ridiculous disease, where the side effects of the treatment are far more significant than the symptoms (i know I'm very lucky to have very few symptoms) and I only know how ill I am when the doctor tells me.

At The last appointment, I had a different Haematologist who started tapering me off the prednisolone (again) and put me on Dapsone (100mg). I shortened my US trip to 10 days so i can go back for another blood test, and then I'm supposed to be off to Switzerland a few days later, we will see what happens...

I'm still following the strict diet I described in earlier posts to hopefully sort my Gastrointestinal issues out. It is taking a lot of will power to do that while travelling with work, which is constant eating out and hotel bars where I inevitably eat some form of salad and drink water while everyone around me enjoys burgers, steaks, beer and wine! My counts continue to go slowly in the right direction (on average), so I'm keeping going with the diet while that continues. I am however moving towards the clever guts diet from Michael Moseley, more than SCD now. They're mostly the same but I suspect clever guts is a little more up to date. I had a period of extreme hunger when I was coming off the prednisolone the first time, which was not fun at all. Its all consuming and it doesnt matter how full ypu pbysically are ypu just want to eat more all the time. I put on 5kgs, I really think I would have put on way way more if I'd been regular foods.

Mike

1 Reply

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  • mdearman,

    I admire your discipline and am thrilled that your counts seem to be improving! I'm also sorry for all the roller-coastering and stress and Prednisolone. It's hard not to have one's head spin right off sometimes.

    Thanks for the update! Keep letting us know how you're doing.

    Ruth

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