Gr8 Expectations

Day 80

When I was in my early 20's, a co-worker, a very centered, spiritual artist gave me the best piece of advice I think I have ever been given.  I was constantly being hurt by the actions of a close friend - I was feeling slighted and screwed over.  Emotionally, it was really eating at me.  This co-worker aptly pointed out to me that the problem was clearly mine and not my friend's.  She told me that I was setting expectations for my friend, based upon how I would react and that I needed to stop having expectations of this friend.  Better advice was never given.  I stopped expecting of this person.  I had known her a very long time and I knew who she was and what she was not.  When I stopped expecting her to react the way I would, I stopped getting hurt by her.  And every so often - especially when the chips were really down - she would come through in a way that was simply sublime.  It was those moments that superseded any trivial disappointments of the past.  And our friendship has survived over 40 years.

Late the other night I was watching TV and an Enbrel commercial came on.  It was about a woman with Psoriasis and she was walking out the front door of her house in a long-sleeved sweater and was pulling the sweater close around her neck.  I suppose the action was meant to show her trying to hide her psoriasis.  It then showed her walking out of the house (I think maybe with less clothes), but she still was pulling the sweater tight to her neck.  This really caught my eye and my thought was that psoriatics are generally not trying to hide their shoulder into neck area and it really annoyed me that they were off base.  By the end of the commercial, the woman was in a short-sleeved sweater and no longer tugging it closed to hide herself.  I get the point, but I think the depiction was off and it's small things, like "details" that are off, that really bother me (such as when watching the movie "Up in the Air" with George Clooney, in the opening sequence they show him at the airport retrieving his TravelPro luggage.  Well, if he really was a Platinum level flier, he would not be toting TravelPro luggage, which does not hold up well to very frequent travel.  Members of the Elite Flier Caste would be traveling with Tumi or Hartmann or at they very least Swiss Army.  This "detail" annoyed me and detracted from the authenticity of the character for me for the rest of the film).  But I digress ...

At the end of the Enbrel commercial, they began citing timeframes and statistics on when and what percentage clearing patients with Psoriasis experienced.  I was still obsessing over the woman trying to hide in her sweater (and it was very late at night), so I didn't really catch all the stats, but the one thing that did stick out was a 4 month marker for it to seemingly "fully kick in".  As I sit here, just shy of 3 months, I realize that I put a timeframe on expectations that I created.  I acknowledge that reading the post by the woman who claimed to see results after one day on Apremilast really messed with my head.  Yes, intellectually and having studied human physiology, I know that is ridiculous.  I know that even if she did not have a placebo, that after one day, her miraculous results were, in fact, the placebo effect.  But I certainly had expectations. I was comparing my skin results to what I had experienced after 6 weeks of a Remicade/Methotrexate combo therapy.  And that is not apples-to-apples as I have chosen not to do Methotrexate combo therapy with Apremilast.

Many years ago, when I first started Methotrexate, it had wonderful results for my joints, but did not significantly impact my skin.  I actually had one dermatologist tell me that I should not have the Psoriasis I had taking Methotrexate and that it was my fault that I didn't moisturize enough (oh puhleeze!!).  I also know that when on Remicade, when I stopped taking Methotrexate along with it, that more Psoriasis would present.  I knew this, so I adjusted my expectations accordingly.  I also knew that the best way to control both my joints and skin, was to take both drugs in concert.

I've unfortunately had expectations here with Apremilast, when in reality, I had no clue what to expect; and therefore, should have no expectations at all. 


Day 80 - Left forearm and right forearm

Here's where we are as of Day 80:

Skin
- Thickness of flake build-up significantly decreased.
- Several new patches
- No patches have disappeared
- Am able to see skin (and freckles) though more patches
- Patches on extremities show more improvement than patches on trunk

Joints
- Let elbow and wrist bugging me a little
- Blow out right knee, but it's getting better
- Overall, joints are pretty darn good

Other
- Stomach still wonky, but sometimes I get a good day or two
- Both my hairdresser and I have noticed my hair thinning - not sure if that is an Apremilast side effect, but it's been significant in the past month or so.

So, I will try to have no expectations, see what results time brings and enjoy the experience of those positive and Gr8 results.

A Kneed to Share

Day 66


My right knee, then and now

 Just needed to share this!  Over the past few days, I am seeing tremendous improvement to the thick, scaly patches on my knees!  The photo on the left was taken a week or two into the protocol and as you can see the edges are an angry red, there is thick scale and you can't see the skin underneath.

This morning's photo really does not do justice to how much better my knees (both of them) look.  Color is a much lighter pink than in the earlier photo, significantly less scale and can you see the brown spot in the right photo (no, that is not a speck on your monitor :-)) - it's a freckle on my knee!!!  You can actually see through to my skin.

I know it must feel like I focus on what the drug "isn't" doing - but I really am starting to see the cumulative effect of what the drug is doing - as witnessed by the improvement in my knee plaques (which are always the toughest to get rid of).  So, it is exciting, positive news and I KNEEDED to share it with everyone! 

We're a little over 2 months in now and I can't wait to see where we are at 3 months in.

Hello, to my new followers.  Thank you for signing up to follow my blog.  I really appreciate it and I hope you are finding this info valuable.

Careers for Psoriatics

Day 63 - July 13th

So, this past weekend, I made an awesome discovery.  A great career for Psoriatics.  Grape Harvester.  A local vineyard, of which I am a member, put out a call to it's members asking for help with harvesting the grapes.  It sounded like a fun thing to experience and since I am an avid nature photographer, a great opportunity to shoot some photos in the wonderful warm golden light of early morning, before the sun climbs too high in the sky.  The Harvest Team gathered at 6 AM, while it was still dark outside and proceeded down to the fields at the first breaking light.



Muscato Canelli Grapes

 I was dressed in a tank top and shorts, and as the sun rose through the morning, I could feel the psoriasis plaques on the back of my upper arms bathed in the intensifying rays.  I put some sunblock on my shoulders and the front of my arms.  A friend, who was there with me, said, "You missed a bunch of areas" and started to rub the lotion into the back of my arms, covering my psoriatic plaques.  I jumped away and exclaimed, "Don't cover my psoriasis - I want that to burn!  The sun is the only thing that clears it up!"  Now, we all know that the sun is not the ONLY thing - but it sure as heck helps!

Now, juxtapose the freedom of being out there in a tank top working, with my thought process a mere 48 hours later.  Out of the blue, totally unsolicited, I received a phone call from an organization interested in discussing a job opportunity with me.  I say "unsolicited" because I have not floated a resume in several years.  In late July 2009, I made the decision to leave the work force and go back to school and earn a(nother) degree, this time to focus on the health care field (I'd been a marketing and sales person throughout my career).  After a lovely conversation with the recruiter, he said that he would like to get me in front of the hiring manager for an interview this week.  Sounds great, right?  Well, it's been 104 degrees everyday, so dressing professionally, but comfortably, in light clothing would be the way to go.  Maybe not so if your arms are covered in psoriasis plaques.  You've all seen the pics of my arms ... not exactly interview appropriate at this stage of the game.  For me, it's a matter of searching my closet for the right combination of sleeve coverage, light breathable fabric and professional appearance.  When it's 104 degrees out, and the heat index make it feel ever hotter, meeting that bill can sometimes be a tall order.  Ah, the angst of a Psoriatic!

The Grape Harvester uniform of a tank top, shorts and sneakers seems awfully appealing (and freeing) when you've got Psoriasis.  These are the odd things Psoriatics think about.  Thoughts that would never enter the realm of someone not suffering from the disease.



Photos on the left are from several weeks ago,
photos on the right were shot Day 62 - 7/12/11

 Ok, on to how I'm doing on Apremilast as of the 63 day point.  Well, a picture tells 1000 words, doesn't it.  Shots on the left were from a few weeks ago, shots on the right are from yesterday, the top are of my left forearm and the bottom set is of my right forearm.

Skin Inventory
 - As you can see from the photo - especially the top set of my left arm, the margins on two distinct plaques has spread and joined into one larger plaque.  Plaque margins in general appearing to be increasing.
- Plaque thickness and scaling - significant improvement from when I first started the drug.
- New plaques - Yes, but probably not as many new plaques as I would've had if I were not on Apremilast.
- No plaques have completely disappeared.

Joints
- Overall pretty good.  Some issues with left wrist, left elbow and right knee.  Problems dissipated on their own.

GI Side Effect
- Still having issues.  I had two days last week without diarrhea and was hoping I'd hit a "turning point".  Unfortunately, that was not the case.  If you are considering going on this drug, purchase Proctor & Gamble stock so that you can at least recoup on your significantly increased toilet paper consumption.
- Still an increase in acid reflux.
 
The stomach issues are not enough to stop the drug, but they are definitely annoying to live with!  And draining (literally, lol).

I'd like to give a shout out to readers in the US, UK, Belgium, Lebanon and Australia and thank you for your support.  I hope this blog is giving you the info you need.  As I've said before, if there is something in particular you are interested in, let me know and I will do my best to address it.

For all the countries I didn't mention - I know you're out there and I appreciate you, shout out coming ...