180 days into my withdrawal from Protopic. Almost into my 7th month. I have not been posting much lately because things are just pretty stagnant. My last flare lasted a week or two. It was nothing too bad, just annoying really. Since then my skin just goes up and down. I am still dry and itchy, a little bit flaky. My neck still hurts a bit at night. I get hives. My hair is still falling out. My face must be a bit red again because I got asked the other day if I had been in the sun. Nope, it’s -25 here today! No sun for me. Hopefully it will start warming up soon. I feel like I need to get sun for my skin to keep healing. I need to get back to the gym to, but im just so tired all the time. I have no energy so it is hard to convince myself to go to the gym. I think right now my worst spots are the insides of my lower legs, my ankles, my hands, the insides of my arms, and my neck and chest. So basically the same spots for the last couple months. Everywhere else is pretty eczema free, just a bit dry.
I hope I start seeing more healing soon. I start to wonder if my skin will always be this way, but I know it wont. I just have to be patient. This is a long journey I am on. I cant wait to feel normal again.
Well I have been wondering when it would come. I think it’s finally here.
I say second “major” flare since going through topical steroid/protopic withdrawal, because I have had some minor mini flares localized to one body part at a time. This time however it seems to be involving more of me. It is so far still nothing as bad as my first flare. Thank the Lord for that! Hopefully it won’t get too much worse, but it has been coming on slowly. My previously improving face and neck, have been getting more dry, tight, and sore. My eyes have been a bit more crusty in the morning. My palms broke out in a bunch of tiny vesicles or blisters. My arms have been much more itchier and a bit flaky. I included a picture below of some of the damage I did Tuesday night while sleeping. Last night at 2 am I woke up extremely itchy and had to take some Benadryl before going back to sleep. My neck and face has also been more flaky, which I have not had much of for the last month or so. So I definitely think this is it. I haven’t so far had any burning this time around and no oozing yet either. Maybe those awful symptoms will stay away this time. And lastly I have been more exhausted this week than normal. I keep almost falling asleep at work. Not good!
I was feeling a little down yesterday, as I am just so ready for this to be all over and have normal skin. Ah well. This flare just means I am one more flare closer to healing! Hopefully it won’t last too long.
You can see some of the damage I did. There is more, I just could not get my whole arm in the picture. At least I am not so red this time.
And my poor hand, which had been improving, was covered in vesicles, which I scratched and now it looks like this.
Thought I would just post a quick update on how things are going…
I am six months now into my Protopic withdrawal or 160 days since I stopped.
I am experiencing a so far minor flare up on my face and neck. As an outsider looking at me I am sure you could not even tell, it is just more that I can feel it. My neck and face have dried out a bit again. They were doing really well, becoming less and less dry. But then last week I noticed my neck getting a bit more sore again when I tried to turn it, nothing like the beginning but definitely a fall back. My eyes in the morning have been a bit crusty too, which they haven’t been in probably a couple months. My neck is still my itchiest spot. Every night like clockwork anytime from about 6pm to 8pm it gets very itchy, occasionally with hives. If I am not careful when I start scratching I can end up scratching my neck for an hour. I try to ignore it, but it is just so darn hard! So my neck and chest are a bit pink and splotchy. Ah well. It’s okay. It will heal in time. I am not too worried about this flare, as I know it’s just part of the process. My arms are still a bit dryer than they had been too, so I think that flare may still be persisting a bit.
My legs are still doing well. I do have some bloody wounds on it from too much scratching with long nails, so I made sure to cut and file my nails down. Hopefully that will heal up soon.
Other than that everything continues in the same fashion. I am still losing a lot of hair. I talk about this a lot I know, but I find it very distressing and worry about going bald before it stops. I have been scouring other people blogs to see when their hair loss stopped. Of course it is so different for everyone but no one seems to have gone completely bald before it stopped. But I decided to try some new things. The coconut mask did not seem to help too much and was very greasy. I really did not enjoy doing that so I haven’t done it in a few weeks. I started to use a new shampoo and conditioner. It is called Avalon Organics: Rosemary Volumizing Shampoo and Conditioner. It’s supposed to help thicken and strengthen hair. I do have to say I am sure if you saw my hair you could hardly tell I have lost hair as its always been very thick, but I know that I have lost about 2/3 of my hair and it’s still coming out. Hopefully this shampoo will help a bit. I used it this morning and my hair looks like its usual self, so we will see. I only shampoo my hair about one to two times per week now I should add.
The other thing I am trying is taking a B-Complex vitamin. I already take Vitamin B12, C, D, a multivitamin, and fish oil daily. The B-Complex vitamin has folic acid and Biotin in it, which is supposed to be good for hair growth. So we will see if these things help. Time will tell.
Not much else to report right now. Hope you are all well. 🙂