Sunday, June 26, 2011

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!!!

Friday, June 17, 2011

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.

Tuesday, June 7, 2011

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.