Hello! Isn’t the weather lovely at the moment? We’ve had beautiful blue skies, some gorgeous sunrises, and it’s been feeling a lot milder. Oh and I’ve even noticed the daffidols are starting to bloom! All this is making me feel pretty excited for Spring!
Life has been pretty hectic lately! We’ve been renovating our living room, which is now all coming together and looking lovely. We went on a van trip to the North York Moors National Park and discovered one of our leisure batteries needed replacing. So we’ve had that done, and now all ready for our Welsh road trip at the end of the month. Then, a week ago, I decided to start tapering my steroids down by 0.5mg.
9 Days In
I’m now 9 days into my tapering, and so far, it’s going ok! In fact, it’s going the best it ever has done! Don’t get me wrong, I’m tired, my body is feeling a little weaker, and my joints are achy. But I don’t feel nowhere near as bad as I have done in the past when I’ve tried to taper down my steroids. I’m just hoping that in the next few days, my adrenal glands will kick in, and I will start feeling so much better!
They say it can take up to two weeks for your adrenal glands to learn to produce more cortisol again. And I know there’s always that worry my adrena glands won’t kick in, especially since I’ve been dependent on steroids for almost 10 years now. A very long time! Way toooooo long!
Plan Moving Forward
My plan with my tapering is to drop my Prednisolone by 0.5mg every 4 weeks. I was on 7mg, have now dropped them down to 6.5mg, and the goal is to get them down to 5mg or lower if I can. My ultimate dream would be to get off them all together! Be able to say, ‘I used to take steroids!’ Wouldn’t that be amazing?!
My Hands
My hands are not good at the minute! You might remember me talking on my previous blog about going back on Nifedipine again for my Raynuads. I’ve now been taking it for almost 4 weeks, and there’s no sign of improvement with my circulation. In fact, my hands have got worse! I’ve developed an ulcer and one of my fingers, and it looks like another one is developing on my little finger.
Ulcer’s are soooooo painful! Mine has been throbbing all day and all night long! I tried zinc oxide dressing to see if it would help to heal it, but no luck. I’ve been putting big dollops of Vaseline on them both, and then wrapping it up in a dressing. This has helped with the pain, and stopped the need for me taking painkillers on a night so I can sleep. It’s also meant to promote healing too, but too early to say at the minute if it’s working or not!
I desperately need my Iloprost infusions! A few weeks ago, I was adamant I didn’t want another round. Now, I’m begging for my Iloprost! I can cope with purple, puffy fingers, sores, and painful fingers when they are cold. But when I get ulcers, the pain just becomes too much!
Not great photos, but here’s my ulcer, and my little finger with possibly another one developing:
That’s it from me this week! Hopefully, next time we speak, my adrenal glands will have kicked in, my ulcer will be on the path to healing, if not healed, and no new ones will have developed.
Until next time,
Goodbye for now
Emma
xox
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