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@rbear thank you for sharing your story with me and that you have had a good transition to the medication and that it is helping. Most importantly, it’s helping
you !!
It is very scary to give up the sin, but is it safe to say that as long as I use factor 50 - and reapply every 2 hours and cover as much of my among with long pants and light long sleeves that I will be okay.
Would you ever swim in the ocean or wear shorts in summer / Spring days.
I have a dermatologist that I will start to see once a year to make sure I’m okay with any sun damage. Am I over thinking g this? I am also nervous of the initial side effects and just hope they don’t hit me as hard.
What were you side effects once lowering away from 5 mg and how long were you on the steroids? I’ve been on them one and off since September and fully on them at 20 mins since February and I’m currently at 7.5 mg and feeling stable. My doctor wants to get me on medication to avoid a flare up and having it affect my lungs with permanent damage.
It’s nice to know I’m
Not alone. Thanks for responding to my post. 🙏
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@ers12345 a little more context, I’m a bit on the younger side for someone to get AS/PL7. I’m a 43 yr male and until my lung issues , used to run 5k’s 3 times a week and was in pretty good shape, no other issues. This thing took me by complete surprise. Honestly I’m just so thankful these days that I can take a pill to manage all this and it’s working. I’m more mindful of the sun between the hours of 10-4. I keep the UV index on my watch or check my phone. And if I’m going be outside for more then 45 min then I’m more intentional about the sunscreen use. I’m not reapplying every two hours maybe more like 4. I still wear shorts and short sleeve shirts. I live in Minnesota the Sun doesn’t get super intense year around. Mostly during the summer. I started on 60mg a day of predinisone starting last July and have been tapering ever sense. I just got off completely 4 days ago. The withdrawal just made me feel super lethargic, a bit moody, and achy. I just pushed the fluids and took it easy for a couple of days. I would encounter mild flares on my skin and would get a little mucusy in my lungs every time I stepped down. But it always has stabilized. As others have mentioned, you can manage the GI side effects with diet. For me, avocado’s , spinach and yogurt and other fermented foods have helped. Occasional alcohol use can cause some heartburn(which I never had before). This is an old drug that’s pretty well known. It’s so much better than the alternative. Don’t over think it!:) I just followed the directions from my Dr and the paper work that came with the drug. It’s been surprisingly tolerable.