First Hospital Stay for Dupilumab

For this study there are certain times I have to withhold from certain foods as well as drugs, alcohol and tobacco. The foods are odd, no caffeine, no char-broiled meats, nothing from the mustard family, no chocolate and no fruit juices. I stay at their facilities for 3 days and take a cocktail drug that they will measure every hour or so by taking blood. This is the same drug that they had to see if I metabolized them well. One other gentleman who was also trying to get into the study couldn't metabolize the Warafarin so he couldn't do the study. Poor guy. A list of the drugs are:
Midazolam 2mg
Omeprazole 20mg
Warfarin 10mg
Caffeine 100 mg
Metoprolol Tartrate 100mg
(Sorry no photo of dupilumab, they always had it in a sealed box)

A representative came down from Regeneron to see the medication administered and I also received my first injection of Dupilumab. The injection was painful, very painful. I personally wouldn't describe as burning. It feels like something is being injected into my muscle and then it's spread down deeper. I literally grimaced and said "Ouch Ouch Owie Owie Owie" as they were giving it. But I'd do anything for a cure and compared to the pain I've been through this was nothing.

They had my meals catered and I spent most of my time watching anime. They would come in every few hours to pull blood to measure the cocktail. Here are a few pics, nothing special but yeah.

Keeping a Secret-Warning Graphic Photos

So I've been having a few styes pop up on my eyes, which makes me nervous that I could have MRSA again. I also had a really bad boil on my head a few weeks ago. Nothing s serious since then but I don't want to tell the Dupilumab study for fear that I'll be kicked out.

The styes only happen when I cry and rub my eyes and stuff, so I've been trying to stay on top of that and I've upped my bleach bath to a couple nights a week, also using gentamiacin in my nose again.

This first photo was taken on May 3 after it popped. It feels MUCH better.

 These next photos were taken on the 15th before work, after I popped one on my eye and after the swelling went down. I had to put a hair band on my head to hold my eye lid up.

They're doing better just need to wait for them to completely heal and go away. PS I'm still losing my hair.

Pre-Screening Process

Today was my appointment, they went over paperwork and what they study was going to be. They took a bunch of blood and are going to make sure that I will be able to metabolize certain drugs well. If I can then I'm in. They also took a urine sample to make sure it's free of drugs and I'm not pregnant. They also did an EKG, which went fine, I have really good assistants helping me and I really like them. There are a bunch of weird criteria I have to adhere to in order to be in the study, but I don't care, I'll do it. Some examples are I can't be on hormonal birth control, and while in the study I can't have certain foods like caffeine and anything from the mustard family... Okay....Also no marijuana use while in the study, which is fine. I mostly used for my eczema anyway and if this study works I wont need it. :)

I'll have the results whether I'm accepted sometime next week. I'll keep you updated!

Lots of papers to sign...and this was an amazing pen!

Dupilumab uncanceled!!!

They called back the next day while I was at work and said they had misread the email they received from headquarters! When they said they weren't taking any more patients they were including the appointment they already had set! My appointment is on Tuesday now and I'll update that as it comes. Hopefully positive things are on the horizon!!

The Dupilumab Study called and canceled..

They said the main headquarters called them and closed the study saying they had enough participants, they were only accepting 18 people. I feel so...empty. My hope was stolen from me... I cried so much today... The sadness is overwhelming... This was my last chance for this study. They were already finished with trial and this was the last one before it hits the market...and there's rumors that the treatment will cost up to $22,000 and we know my insurance won't cover it.

My Skin does better when it's cold

How about you guys? I can't stand the heat and neither does my skin. At the same time, sudden weather changes messes with my allergies, which is not good for my skin...

 I have no idea why I included this....Kawaii!

I have about 5 ingrown nails right now, this one is the worst at the moment...

My study appointment is on the 26th! I can't wait! But I'm scared at the same time....

Hives and Life

All the time! Everwhere! And they are not small. The only way I can get them to go down is by putting a bit of the steroid lotion and leaving it there until it goes away. Not my preferred method but these things itch!

On a completely unrelated note I started going back to school again. It's online so I don't have to worry about missing class because of my skin. It's for film at an art school and it's out of state, so it's pretty expensive. I'm trying to learn Japanese on the side but school and work takes a lot out of me. I'm working on grammar and just started learning Kanji and man is it tough! Baby steps...
I also just downloaded Miitomo and I love it. If you don't have it already you should check it out, who doesn't love a mini version of themselves?  So I'll leave you with some fun photos. :D

"You don't have severe pain" and Dupilumab Study

I went to go renew my medical Marianna license this week and that's what the "Doctor" said to me. He wouldn't look at my photos that I brought in and barley looked at me. I had to fight back tears. He had no problem taking my money and not refunding me though. I have had no problem receiving my card for eczema for the last 2 years, but this year I was denied. I was really upset until I received an important phone call that same day.

A representative from Regeneron called me and asked to set up an appointment for the Dupilumab study. I do have to have a clean system from THC so it actually worked out well. Just wish I was scammed $50 bucks for someone to belittle my condition. Hopefully I'll be able to update with some more study information as it comes through. This could be our Holy Gail for eczema...

Ingrown nails and Hairloss

As I lowered my steroid doses or when I was going though Topical Steroid Withdrawal I would lose my hair and get bad ingrown nails.At one point almost all my toes had ingrown nails. On each side, that's like 18ish... So even now, as I get ingrown nails I take it as a warning.

I mentioned this to my dermatologist and she took some blood to make sure there wasn't anything wrong with my thyroid. Surprise! There wasn't, I was however extremely deficient in vitamin D, so I'll be taking some high doses of Vitamin D for a few weeks, I'll try to get out into the sun more and increase my food intake that has that vitamin. I'm not a big fan of fish but I'm trying to eat more.

Oh by the way! That boil that popped up, (no pun intend) it was in fact MRSA again. So I'm on antibiotics to hopefully squish that before it becomes a problem. Here I am after 2 weeks of 50,000mg of vitamin D and a week or so of the antibiotics, I swear they're magic.

At least some days are better than others

Here I am on the 11th...

And here I am on the 13th. Still bad, but I'm grateful for days like this. I don't look like a monster. I'm still using the lotion mix that I was prescribed by Dr. Aron to keep my skin at bay but I feel like it's working less and less. That's steroids for ya...