One Step Up and Two Steps Back

Two Weeks In

Day 15

Two weeks in.  The pics to the right definitely show some differences, but I am not convinced it actually has anything to do with the Apremilast. 


Here's what I see:

Skin

• Patches are definitely not as red and as inflamed.  My skin, for the most part, doesn't appear to be flaring (with the exception of edges of scalp, especially behind the ears).
• No new psoriasis patches (that is actually huge)
• Patches have not decreased in diameter - stayed the same or have spread slightly (note the top 2 photos, what was a distinct round spot with defined edges, now how joined the patch below it.
• No patches have disappeared.
• Patches are flatter.
• Scale is more controlled.

Joints

• Fingers on right hand that had been swollen, painful and limited mobility stopped hurting on Day 6.  On the afternoon of Day 10, swelling and pain returned.  The afternoon of Day 14, pain disappeared.
• Foot pain has never fully subsided, but is less painful.
• Day 15, pain and mobility issues in left wrist.

Other Symptoms

• My newly found evening cocktail of Tylenol and Prilosec is now mostly just Prilosec.
• Wonky stomach and change in BM's.

What I have done to "help it along" (which could make a difference in skin appearance whether on placebo or drug):

• Bathe to give myself relief from itching and burning plaques.  Exfoliate patches after bathing.
• Exfoliate plaques with each shower.
• Daily use of approved topical gel for Psoriasis daily on arms and legs for relief.

Without the drug, would the things that I am doing (all approved for the study), be providing me with the same results?  Quite possibly.  Use of a topical steroid on a regular basis will provide at least some relief.

So, while my skin plaques don't appear to be as red and inflamed, I feel that there is no clear definitive result as of the 2-week mark.

Everytime I think I see results ... a change of lighting makes it appear that there are none.  Or a joint swells ... One step up and two steps back.

Next blog I'm going to share some Psoriasis stories of encounters with "Professionals" from doctors to hairdressers.  While some were positively horrifying at the time, I can now look back and view with humor.   Share your stories here!

The Good, The Bad and The Scaly

Day 6 ...

I keep looking at my skin, as if it's going to magically transform before my eyes ... and so far no miraculous transformations. I think the plaques might look a little thinner, but I'm not sure and I'm going to have to refer to photos I took on day 2. With Remicade, I remember right after my 3rd infusion (6 weeks in), talking on the phone with a friend and realizing, "Wow, under this flake it's not thick and red anymore. Wow, under this flake it's gone!"

I'm using some of the "approved" topicals - which are Class 6 - so very weak and not sure if they are giving me any additional relief. I've been using them on my arms and legs, since the plaques are out of control and burning, but I've decided not to use them on my "trunk" patches. These patches are going to be "control patches" - if they clear without any topical assistance, then I'll be convinced I'm not on the placebo (right now, I'm not convinced).

One change I did wake up with this morning was my pointer finger and my middle finger on my right hand were no longer swollen and painful and I could totally straighten my pointer finger for the first time in a month. I know that sounds like a positive result, but I've found the arthritis part of this disease to be "migratory" - meaning joints will hurt for a few days and then be fine and somewhere else may (or may not) start hurting. The strange thing about this was that the same joints hurt for so long.

Someone posted on the Inspire.com board that they've been on Apremilast for a month and started seeing results after Day One!!!! They said they had headache, nausea and vomiting and within a month saw significant results! Really cool to hear about the results.

My stomach has been a little wonky ... but that doesn't mean squat (no pun intended :-)), since my stomach tends to generally be a little wonky. The biggest symptom I'm feeling is the continued heartburn, which could be totally unrelated. I am still really fearful that I am in the 33% placebo group.

I've been reading a lot of folks posts on Inspire.com and some of the things that non-psoriatics would never even think twice about are top of mind for us - finding a hair dresser when your scalp is flaring, a masseuse when your skin is flaring, doctors, etc. We've all got our stories ... and I will save mine for another post ...

Is it all in my head?

Wednesday night was my first night and before bed, I got the headache from hell. Unfortunately, I'm not allowed to take anti-inflammatories, so Tylenol is quickly becoming my new best friend. Thursday afternoon another awful headache.

Is it because I've been sitting in bed hunched over a laptop? Or because a cold front was blowing in? Or is it from the drug? Or is it just in my head and is purely coincidental? I looked up side effects and headache, nausea, vomiting and diarrhea are the most common side effects in the first few weeks.

Data also showed that a significant portion of the people on the placebo also reported headaches. So, basically my headaches are an indication of ... well, nothing. The only other "symptom" I've encountered is heartburn. I've had to take Prilosec for the past 3 days and I had totally been off all GERD meds for months.

I've started to take pics of my skin to document where I am at the start of the process, so that I will have a point for comparison. Two people on the Inspire.com board recommended that and it's a great idea. One participant said that she's not seeing any results and her Dr. says there is a 33% improvement. I believe her. We know our bodies and our skin well. And the question remains ... is it all in our heads or are they symptoms and results real?

Apremilast Blister Pak

Are You a Placebo?

(Sorry this is such a mess, please read this post under pages. Blogger lost my original blog and post and I'm having issues with it's recreation. Post and photos are under pages on this blog)

Today I started in the Phase III Clinical Drug Trial for the new Psoriasis and Psoriatic Arthritis drug, Apremilast.

I'm excited, scared, hopeful, itchy, achy and praying that I did not get the placebo in the trial randomization. There are 3 prongs to this trial - the first two get actual medication, the third a placebo. Odds are on my side ... I'll know soon enough and so will you.


How did this all come about? Well, I've had Psoriasis since I was a teen and it got steadily worse in my 20's and 30's. I was able to control it with UV lights, the sun and a lot of topical steroid cream. After having a baby, the severity of my Psoriasis went off the charts and 2 1/2 years later, I got slammed (and that is an understatement) with Psoriatic Arthritis. What a mess. A totally debilitating mess.

Methotrexate and Remicade gave me a lot of relief for a long time - so much so, that I actually forgot I had the two diseases (well, except for the few hours I sat with an IV in my arm getting an infusion every 6 weeks). I wore tank tops and shorts and flip flops, sleeveless blouses, short skirts. I hiked up mountain streams with 25 pounds of camera equipment on my back. I forgot, I really forgot.

I forgot what it was like for my skin to itch and burn. I forgot what it was like to flake everywhere. I forgot what it was like not to be able to grasp a jar to open it. I forgot what it was like not to be able to clasp my own bra without incredible pain. I forgot what it was like to have to explain that what I had wasn't contagious. I forgot what the stares were like. I forgot ... It felt good.


Going off of Remicade and Methotrexate has made me remember and it has been humbling. And maybe I never really forgot ... maybe I just repressed it all. I don't want to give up my shorts and tank tops (especially since I now live in Texas and the summers are hot and never ending). I don't want to not be able to take classes because my hands hurt too much to grasp a pen and take notes.

Over the last few months, my skin has flared with Psoriasis patches and plaques that seem to multiply daily. My joints stiffen and swell and make easy tasks painful and I unfortunately am reminded every moment of the day, that I do, in fact, have both of these diseases.

I have now been offered hope again in the form of a new drug, Apremilast - a drug specific to Psoriasis and Psoriatic Arthritis that is still in clinical trials. As I took my first dose today while at my doctor's office, I spoke to the little pills in my hand and pleaded with them, "Please don't be the placebo".