Wrapping It Up ...

Last week Celgene denied my doctor's request to allow me to add Methotrexate to my protocol.  As I was not seeing improvement - especially with the psoriasis portion on my disease, I withdrew from the trial.

This diptic to the left is my left forearm at the beginning and the end of the trial and is fairly representative of the results on the rest of my body.  Am glad I photo-documented this, because I would not have remembered the size of my plaques at the beginning of the study.  As you can see, there was a significant size increase in this plaque.  The rounded plaque at the center engulfed the smaller plaque to the upper right of it.  Below this plaque, you can see the significant amount of space between it and the plaque at my elbow.  In the ending picture on the right, note the thin gap of unaffected skin between the enlarged forearm plaque and and my elbow.

My doctor has seen a lot of success with other patients, but many of them were already taking Methotrexate when they began the Apremilast trial and were able to take it as a part of a combo therapy.  I had stopped taking Methotrexate several months before when I got pneumonia.  In hindsight, I probably should have started it again prior to entering the trial and I would have been able to enter the trial doing combo therapy.

Why Celgene does not permit individuals to start combo therapy at 24 weeks and track those results, is beyond me.  If someone out there (including Celgene) knows a reason for this - please post it as a response here.  I would very much like to understand the rationale.

So, on to the next protocol ... for now, I'm supposed to be back on Methotrexate and folic acid - but last week I came down with a cold/sinus infection, so I'm not going to do anything until I'm fully recovered.  The plan is to do a combo therapy of MTX and Symponi - a once a month injectable.  I know there are quite a few new drugs in the pipeline, including a current RA drug that is being tested for PA and I'm hoping to have even more options in the coming months and years.

When I start my MTX and Symponi protocol (hopefully within the next two weeks), I will document my progess here (even though neither of these drugs is in clinical trials), hoping to provide more information for my fellow psoriasis and psoriatic arthritis sufferers.

Until then, flake on and stay moisturized!

The Great Oz has spoken ...

It's been a long time, but I wanted to see where things were going to go.  My psoriasis plaques are in general at least double the size of what they were when I started on Apremilast.  I have a lot of new psoriasis plaques that did not exist when I began the trial.  My joints are still swollen and tender.

At 24 weeks, my Dr. asked if I could add Methotrexate to the regimen, as I'd had success previously with dual modality therapy (900 mg of Remicade and 15 mg of Methotrexate).  Bear in mind, that a lot of people are currently on dual modality therapy of Methotrexate and Apremilast (they began the trial on both), but the Brain Trust (clearly, choking on my sarcasm) at Celgene will not permit me to add it to my regimen to see if we could achieve success.  Beyond me why they would say no. 

We already know Apremilast alone does not work for me.  Guess it's not important for them to collect data on people adding a second modality and what success, if any, could be achieved.   I would think that would actually give them just as "clean" data as that of those who began the study with Metho and Apremilist (maybe even cleaner because there would truly only be one variable).  But then again - a 30 yr.career of setting up and analyzing test and control cells makes mining data more important to me than to others.  Clearly.

I am heading out for a few days - but when I come back, I will post photos of what my skin looked like at the beginning of the trial and at the end.  Am glad I photodocumented this, because as much as I "wanted to see" - oh look I can see a freckle or I can almost see a patch of skin breaking through there - when I look at the photos, the reality is, that plaques are significantly bigger now and there are a lot more of them.  And they didn't clear.

I really wanted this to work.

So, now the search is ... what's coming down the pipeline that's not a heavy duty immunosuppressant that maybe I can piggyback with Methotrexate (from the start) this time.  Does anybody know of anything else in trial right now that is not as harsh on the immune system, as say, a Remicade?  If so, please leave a note here or email me.

Thank you for joining me on this journey ... I hope it's been informative and I'll let you all know what my next steps are going to be in fighting the Psoriasis/Psoriatic Arthritis war ... this was only a battle ... and I just wish the opposing General had a better tactical strategy.

But for now Toto ... we're outta here ...

No News Is Not Necessarily Good News ...

Day 39

Yes, I know it's been awhile ... but I don't have a whole lot to report.  There has been no change.  I am still covered with psoriasis - in fact, I've got new patches sprouting up everywhere. Three new ones on the front of my upper right arm (a place where I've never had psoriasis before) appeared yesterday, out of nowhere.

My joints are starting to bother me - my right wrist blew out yesterday, my feet are becoming painful and I fear as winter gets closer that my skin is going to be in agony, as I am covered in psoriasis.

I am bummed.  I am really bummed.   I know other patients that my doctor has enrolled in the trial are doing beautifully.  I still look like I did when I started in the trial.  No, that is not true - I look worse.  All my existing psoriasis plaques have spread, new ones have appeared and stayed, none have disappeared.

The only way to get a valid read on the efficacy of Apremilast for me would be to set up an Apples-to-Apples test for me (years of direct marketing and setting up test cells makes me a stickler about setting up head-to-head tests with only one variable to determine the success or failure of that variable.  More than one variable and there is no way to get statistically valid results). 

If anyone from Celgene is reading this (or if your PR agency is doing a media sweep for you and picks this up) ... here is what I'd like to propose - a valid test of what a high dosage (30 mg) of Apremilast plus Methotrexate would do for a person who had formerly been on high dosage Remicade (900 mg) and Methotrexate.  Then the only variable would be swapping out high dosage of one drug for another and would give you a head-to-head test on Apremilast vs. Remicade for high dosage users (most people are not taking anywhere near 900mg.of Remicade, as I was).  To really look at efficacy, is doing combination therapy with MTX.  I know that MTX alone works on my joints, but doesn't have a significant effect on my skin disease.  Remicade in combination does a good job with both aspects of the disease, but when I get lax about taking the MTX, the skin flares.

So what about it Celgene?  There is some good and interesting data that we can glean from this, since I appear to be somewhat of an aberration as far a both results and atypical dosage amounts.  We've both invested nearly 6 months in this ... please don't let me go through a painful winter ... I'd like to make this work, wouldn't you?

As we all know, PR guys will always tell you "all press is good press" ... let's truly make this good press and another Apremilast success story - I think we've still got that opportunity by employing proper therapy ... and if it doesn't work, at least we know that no stone was left unturned and some good learning came from that, too.

ClinTrialnTrib@aol.com

Every Picture Tells a Story ...

Day 19



Top: Left and Right Forearms
Bottom: Left and Right Knees

 Both my doctor and the study coordinator looked at me at my last visit and said, "I think you're on placebo".  I know they are comparing me to the fabulous results they have seen with their other patients.  But I'm not sure they are right. 

My gut tells me that I have been on actual medicine all along - but in the test prong with the lower dosage.  Why do I say that? Months and months of diarrhea is why I say that.  My wonky stomach has finally settled down and did not act up when I "Early Escaped" out of Phase 1 and began taking what we know is real medication.  The only issue I've been having is headaches - but I think those are coming from my neck and studying.

Yes, I know these photos were only taken at Day 19 of what we know is confirmed medicine.  But you tell me - do I look ANY better to you?  I'm not seeing it.  What do YOU, my faithful blog readers, think?  What is the story you are taking away from these pictures?  The story I'm taking away is if my skin doesn't clear before winter sets in, I'm going to be hurting big time! 

My fear is that I am on (and have always been on) the lower dosage of the medicine - which at my level of disease severity, is like putting a bandaid on a severed artery.  Doesn't quite do the trick.  I was being infused with 900 mg. of Remicade in conjunction with Methotrexate to keep my skin mostly clear (elbows, knees, scalp and other assorted areas had some psoriasis) - so being on the lower dosage of Apremilast is probably not enough to manage my disease successfully.

I flared during my period and my plaques got red and raw and my scalp went haywire.  It's calmed down some since then.  New patches continue to develop and no patches have disappeared.

Yes, I know it's not even a month since my Early Escape - but with the lack of GI issues, I really think that I did not just start actual meds 19 days ago.  I could be wrong, but that is rare (ask my husband :-)  ).  For once, I would love to be proven wrong and walk in to my doctor's office showing the same success as the other patients in the trial.  If only I could just PhotoShop my pictures and my skin to tell a different story ...

Time May Change Me, But I Can't Change Time ...

Day 5

Yes, you read that correctly ... Day 5 ... Day 5, you say - scratching your head, how can that be?  How can she turn back time ... Ahhh ... that so brings back memories of the Thin White Duke himself ....

Many, many moons ago ... sometime in the mid-to-late '70's, my college compadres and I got tickets to see one of our very favorite artists, David Bowie, at the LA Colisseum.  We would spend hours in our dorm rooms singing Rebel, Rebel, Young American, Ziggy Stardust, Changes and many other great Bowie tunes - so we were really psyched up for this concert.  At some point early in the show, one of my close friend's younger sister found us at our seats.  She had dropped a hit of acid and was freaking out that time was moving forward and she wanted it to stop and go back - and when I say freaking out, I mean freaking out.  She had launched into this diatribe and her sister and I tried talking her down and talking some sense into her. It wasn't long before her sister got sick of it, and she and her boyfriend left, leaving me with this crazed, time-obsessed tripper.  Although her sister had left her to go enjoy the concert, I didn't feel right about leaving her alone.  I missed most of the concert trying to talk her down, and finally, well into the concert, the only thing that was worn down was my patience.   Bowie's band struck the first chords of Rebel, Rebel and I just needed to sing along, I need to be in the present, I needed to join the energy in the room. Finally, I turned to my friend's babbling, freaking-out sister and firmly said, "Enough.  You need to be quiet now!"  Her eyes grew large and she silenced.  I couldn't turn back time and enjoy the bulk of the concert that I had missed ... but I could embraced the time that was left to enjoy the show and lose myself into the magic that is David Bowie live.

Now, I know, I still have not answered your question ... how did you get from Day 100-something to Day 5?  How did she turn back the clock, you may be wondering.  It's called Early Escape.



Day 5 - Redux
Left & Right Forearm
Left & Right Knee



Turns out I have not seen a significant enough improvement in the number of joints affected or the percentage of clearing of my skin.  So, if I was in fact on placebo, I no longer am - I am on real medication.  My Doctor and study coordinator think that I was on placebo, based on what other patients involved in the study look like.  I am not so sure.  But time will tell.  We will know, if time changes me and I hope it does .... so I have reset the clock and turned back time.  Today was Day 5 of being certain that I am on medication.  Let the clearing begin ... turn and face the strange ch-ch-changes.

Gone, but not forgotten



Forgotten Pumps of the Past
Classical Gas Museum, NM



School started a week ago for both me and my son - so, time has not been a commodity.  I just shot some pics of my knees and elbows this morning and after I study today, I will try and sit down this evening and write a blog post (unless I am still studying).

Thanks everyone for following.  Hello to all the followers from InvestorVillage.com - hope you are getting the info you need from my journey.  Just remember, I am only one person and how my body responds is different than any other person's experience with the trial.  As a reference point, to keep my psoriasis and psoriatic arthritis at bay, I have taken as much as 900-1000mg of Remicade in conjunction with Methotrexate.  That is a HUGE amount of Remicade - triple, in fact, of most people's dosages.  So, given that, I am already not your "normal" subject.

Ok, off to study ... more to come.  Promise I won't forget.

"Sunshine On My Shoulders Makes Me Happy ...

Day 96

... Sunshine on my Psoriasis makes me clear" ... c'mon sing along :-) ... ok, ok ... I promise not to launch into "Rocky Mountain High" next.



Juneau hiking in Santa Fe, NM

 So, last week I enjoyed a holiday in the beautiful hamlet of Santa Fe, NM ... a mile closer to the sun, clean air, cool temps - the perfect combination for this Psoriatic to be out in a tank top everyday soaking up all that natural Vitamin D.   Our White Shepherd, Juneau, was with us on the trip and as doggie good luck would have it, the very best dog park in Santa Fe (and the best one I've ever seen), Frank Ortiz Park, was right around the corner from where we were staying. 

Juneau and I would begin our days with an hour's hike through the canyons, wandering trails, up and down hills, across an arroyo, meeting other leash-free beasties and their humans along the way.  Sometimes the humans would stop and talk as our beasties frolicked and jumped and chased one another.  All the while, I could feel the sun's rays soaking into my skin ... and into my Psoriasis.  Our days were spent outdoors and the suitcase filled with clothes went largely untouched, with the exception of my tank tops.  Early every evening, Juneau and I would enjoy another hike and I'd feel that glowing burn of the late afternoon sun - a feeling I know well from growing up near the beach, that late afternoon sting on already sunburned cheeks.

Everyday I'd look in the mirror, getting prouder and prouder of my browning shoulders and slathering my Psoriasis with the study-approved topical, to help speed up/intensify the sun's handiwork.  Do I think about wrinkles?  No.  I think about breaking up these damn plaques and getting them to disappear!

The plaques on the backs of my upper arms absorbed the most direct light and are marginally better.  On my forearms a slight breaking up of the plaques and less scale.  I needed another few weeks in the sun.  Unfortunately, I am home now and the daily temps have been running between 104-106 degrees daily.  Not exactly the weather to be hiking around in or laying out and soaking up rays.



Day 90 - Left and Right Forearms

 So, more than anything I can enjoy my nice brown shoulders and arms and marginally improved Psoriasis plaques. 

Inventory time:

Joints
- For the most part pretty good.  No issues when I was hiking (yay)!!  Neck and fingers on right hand a little painful.

Skin
- See above.  Patches exposed to a lot of sunlight marginally better

GI
- A bunch of great day - until today :-(.   I really thought I was passed some of the stomach distress.
- Taking Zegerid most nights again

So, as we approach 100 days, my joints feel pretty good.  My skin, looks not so good.  And I really need to spend a month at the Dead Sea ...or on St. Barth's ... because sunshine clearing my Psoriasis make me very, very, very happy!

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 ...

I Enjoy Being a Girl ... Ummm, Sometimes Maybe Not So Much ...

Day 47

Ok, let me start this blog post out with a warning - If you do not want to read about or are offended by talk about "female hormonal issues" - stop reading and wait for my next blog post.  If those things don't phase you and you can accept this information in the clinical sense ... read on ...

This was kind of a weird and telling week in my Apremilast journey.  Clearly, my hormones were running amuck as I started experiencing nasty PMS symptoms ... ovarian pain, backache, achy knees, icky nausea feeling ... I knew my "time of the month" was imminent.  My psoriasis plaques also displayed changes, and unfortunately, it was not for the better.  The light pink I've described in my past few blog posts was no longer visible and a deeper, angrier red took over, seemingly overnight.  The flattened aspect of the plaques also seemed to disappear and a thicker, bumpier surface from weeks and weeks past, reemerged.  Margin growth continued.



Day 47 - post-Hormonal Hell



This past Wednesday morning, the day I actually got my period, I woke up with significant swelling in my right hand - very painful - the joints at the top of my palm, affecting my index and middle fingers were just blown out.  About 4 hours later, the pain subsided and has been gone since.

Now that I am a few days past the onset of my period, the color of my plaques has returned to a lightish pink.  I definitely have more scale build-up and thickness underneath from this "hormonal flare-up".  Definitely a setback from where I was.

By no means is my skin clearing up, nearly as fast as I'd like; however, the big unknown is still - am I on a placebo, 20 mg or 30 mg?  If I'm not on the placebo, then I am guessing this is the 20 mg dosage. 

Let me put this in perspective though for you - and for myself.  When I originally went on Methotrexate, it did a great job on my joints, but very little for my skin.  When I added Remicade to the protocol, my skin cleared after 6 weeks.  To maintain clear skin, I had to be administered a massively large dose of Remicade - 900-1000/mg (most people are not on dosages that large).  At times when I would stop taking Methotrexate with the Remicade, my body would again create psoriasis plaques.

I bring this out to say, although I am probably a prime candidate for the higher dosage of this drug, I am sure if I were to layer it with Methotrexate, I'd be seeing much better skin results.  But I am not going back on Methotrexate.  At least not at this juncture.

Other housekeeping items - stomach is still wonky.  I live with it.  Prilosec usage is down ... only here and there now.

Now to you the reader ... first, I would like to say thank you to all of you out there!  I am amazed at the international scope of the readership.  Very cool.  I know we've got some investors out there and some fellow psoriatics and people from all corners of the world.  Here's what I'd like to know from you - is there information that you would like to see me specifically cover in this blog?  What do you want to know about my Apremilast experience that I am not covering?  Please let me know and I will do my best to address it.

Also, please comment - let me know what you think.  Am I boring you all to death out there?  I know this is not the most entertaining subject matter.  And please click the link to follow this blog.  I have no followers, but I see that stats - so I know you are out there and I know there are a lot of you!!!  So join me in this journey and lets make it more interactive!  I feel like a talking head.  Again, thanks for reading and I hope you are getting the information you need from this blog.  Let me know, ok!!!

Day 38 - I See Freckles ...



Upper - Right forearm, Left forearm
Lower - Right knee, Left knee

 Day 38

Apologies for not being a more regular and consistant blogger.  I have good intentions and think about it a lot, but just don't take the time to actually sit down and write.

Ok, so this morning when I first woke up, I took a few pics.  As you can see, my plaques are still there and large - actually in most cases even larger than when I first began Apremilast.

They are; however, flatter, not nearly as inflamed, much lighter in color and do appear to be drying up.  There are a few patches on my forearms where I can actually "see-thru" them and see the freckles on my skin!  That is huge.  Yay!  I  am actually seeing my skin underneath for the first time since the patches/plaques appeared.

So, I think I am on the actual medicine and that it is building up in my system.  I can't wait to see the changes 10 days from now because I think it's really starting to kick in.  Now I know the pics of my knees above still look terrible - and they do - but they really do look a lot better.  Scale is so much thinner and color underneath the scale is so much lighter pink.

My stomach is still a mess.  I wonder when/if my stomach will be used to it.  It is not so severe that I would stop taking the medicine, but I am visiting more public restrooms than I would prefer.

Joints are in pretty good shape.  Hands/fingers are iffy ... really have to watch them (certain movements will set them off).  All in all, really good and now the skin is finally starting to show improvement ...

Looking forward to hopefully showing off my cute little freckles in a few months.

Day 28 - Hurry Up and Wait

Just a quick post ... tomorrow I'll post a long one - I promise!

Tomorrow is my 4 week check-up and I can't wait to hear what the doctor says.  I think I might have the lower dose of the drug and am hoping the cumulative effect will show more results.

Rheumatology
Joints in my right hand are feeling a whole lot better (good thing!)
Bone in right foot, still painful - no improvement
Left wrist thumb, not so hot and writing with a pen/pencil for any length of time is very difficult.
All in all, joints feel ok, except a few areas

Dermatology
A few new patches, not a lot
No existing patches are gone
Existing patches have spread in size (with individual patches merging)
Patches do not seem as thick
Underneath scale, patches appear to be a lighter pink in color than original red (tonight arms are looking light pink)
When I look at my arms, they look better to me, but when I look at them in the mirror, they still look horrible
No improvement in patches on trunk of body

I guess I was hoping to really see some more definitive results by now.  But when I do an inventory - as I did above, I can quantify where I am seeing results.  And I should be happy!  Especially not being in a lot of pain.  Just wish I'd see more skin results NOW :-) ... scratch, scratch ... scratch, scratch.

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".