A spoonful of sugar helps the medicine go down.

Most of us in our youth sang this song and never imagined that the idea that we might need 5 pound bag of sugar to take all our pills one spoon at a time.  Psoriasis and Psoriatic Arthritis have come a long way in the last 5 to 10 years in respect to pharmaceutical treatments.  We still are a long way from knowing what causes either disease or what actually causes us to be triggered to have them, but we are making strides in the right direction to finding therapies that will give relief.  I get asked a lot of questions about treatments available, and on the message board on online communities about Psoriasis and Psoriatic Arthritis medication questions are probably 60% of the inquiries.

As my life is at a bit of a standstill in respect to my medical treatments I thought I might go through the pharmaceutical options available as of today. I will make a list of links at the bottom for resources as to where I found this information so you can research them further.

Prescription Topical Steroids: These range in strength from class 1 (weakest) to class 7 (strongest). You can find a list of currently used steroids in their class levels HERE.  This is usually the first line of pharmaceutical attempts to treat psoriasis.  These should be used sparingly only on the affected areas of skin.  One of the potential and common side effects of long term use of topical steroids is that the skin in the surrounding area will thin.

Tar treatments:  Many of these treatments can be purchased without a prescription, but some especially for the scalp are prescription strength.  Tar is one of the oldest treatments for Psoriasis.  In prescription strength formulas it is often combined with salicylic acid.  These treatments can be quite effective for many, but they can smell bad and stain clothing and skin.  OTC(over the counter) treatments are fairly readily available in most pharmacies and I've seen several on Amazon.

NSAIDs: Non-Steroidal Anti Inflammatory Drugs. These come in both OTC and prescription.  Generally they are advised regularly for Psoriatic Arthritis patients, but current research shows that general inflammation is predominant in all Psoriatic patients so the prescribing of these may become a common thread for Psoriasis patients. OTC versions of these include aspirin, ibuprofen (Advil and Motrin), and naproxen sodium (Aleve).  Some of these also come in prescription strength.  The National Psoriasis Foundation has a current list of commonly used NSAIDs  HERE.  One thing to keep in mind is that many of these medications can be very hard on the stomach, and can cause liver damage if taken in excess.

DMARDs: Disease Modifying Antirheumatic Drugs. These medicines are usually only looked at if the above treatments are failing or not getting the level of improvement that your Dermatologist or Rheumatologist feels is appropriate.  From reading message boards and talking to other Psoriatic patients it seems that many are jumping straight into the DMARD pool.  This may be because it is  being found in studies that early treatment for Psoriatic Arthritis can be imperative in extending quality of life in patients.  This class of medications includes Methotrexate (MTX), Leflunomide (Arava),  Plaquenil (Hydroxychloroquine), Sulfasalazine and, Ciclosporin. These drugs are used to reduce inflammation and damper the immune system so that it does not continue to attack the body as a foreign invader.

TNF Inhibitors: These drugs are the newest in the arsenal of medications doctors are using to fight Psoriasis and Psoriatic Arthritis.  Enbrel  (Etanercept), Humira  (Adalimumab), and Remicade (Infliximab) are currently approved in the United States for both Psoriasis and Psoriatic Arthritis therapies. Stelara  (Ustekinumab) is only approved for Psoriasis, but is in Phase III studies for approval for Psoriatic Arthritis.  Simponi  (Golimumab) is only approved for Psoriatic Arthritis currently.  These medicines are often used in conjunction with DMARDs, but are generally only approved after use of at least 1 DMARD has failed.  This class of medication is used to inhibit the TNF (Tumor Necrosis Factor).  The TNF is believed to be a primary cause of inflammation in many auto immune diseases.  In patients with Psoriasis it has been found that active skin cells are found to have elevated levels of TNF so these medications are used in patients with only Psoriasis to limit those levels.  These medications also act as immune suppressors.

Narcotic Pain Medications:  These are used frequently especially for Psoriatic Arthritis patients.  Many are a combination of a NSAID and a narcotic element (Vicodin and Norco).  Though Narcotic therapies have gotten a lot of negative press in the recent years because of addiction issues, working with your specialist or a pain management specialist to use these TOOLS to reduce your pain to functioning levels is an option.

I know all this is very overwhelming, especially for someone who is newly diagnosed with either or both of these diseases.  I will do some follow up blogs to give more detailed information on the DMARDs and TNF inhibitors, but I wanted to give some basic information to people who have no idea where to start in their research of treatments available.  These are only the pharmaceutical treatments.  I will discuss homeopathic and naturalistic treatments at another time.

Finally I want to say I am in no way a medical professional.  I am offering this information from my personal experience with both Psoriasis and Psoriatic Arthritis and the research I have done over the years in my journey trying to find relief.  Be sure to discuss your treatment options with your specialist.  Always remember you will always be your strongest (and sometimes only) advocate for your health.  Be informed, be aware, and be assertive!

Links to more info

1. National Psoriasis Foundation
2. Web MD
3. American College of Rheumatology
4. Drugs.com

I just need to breathe

I am not sure if I have a new side effect or something else wrong with me, I mean something NEW wrong with me.  I've noticed the last 2-3 months that I occasionally feel like I need to take a deep breath.  It wasn't all the time or even frequent necessarily.  It was happening maybe 2-3 times a day I'd feel like I needed an extra deep breath.  Friday it started getting worse.  It was bad enough that the boyfriend has become concerned.  I did some research, and this could be a side effect from 2 of the meds I'm on, the Simponi and the vicodin.  I also stumbled across a article on the Internet that talked about psoriatic arthritis being shown to cause inflammation in organs including the lungs.  I really hope I have a reaction to the Simponi or vicodin. I'll be calling the Dr tomorrow to see if he can get me in this week.  Just so my friends and family don't panic when they read this, I am not sitting here gasping for air suffering.  It is still fairly sporadic  but it is becoming a much more frequent occurrence and something I need to get checked out.  It really sucks I have gone to the effort to quit smoking and NOW I can't breathe.  What is funny is that I actually am breathing better most the time.  I'm not always congested and coughing up crap. So I'll be calling Dr. Lavery tomorrow.  I'm still waiting to hear about my Hepatitis screening from over a week ago so I can get those results then too.

So there you have it.  Possibly another side effect.  Simponi really hasn't done a damn thing for me so being told I need to stop it wouldn't really bother me.  It's not costing me anything, but it's a poison in my body that has a lot of potential to be bad for me.  It isn't like the Humira that I was actually seeing improvement with my psoriasis almost immediately.  I'm 3 and a half months into the Simponi project, and nothing.  My skin is worse than before, I've developed pustular psoriasis on my feet, and my joints hurt ALL the time (not better or worse than before).  If I'm told not to continue it's not a loss of a dream or even the shimmer of hope.

April Showers bring May flowers, but it's August!

I am one of those people who are sensitive to atmospheric change.  This means that when storms are building my pain levels increase the more they build.  Usually I dread spring because in DFW we are  bombarded with storms.  Somehow this year it seems like storm season started early and it doesn't seem to be ending.  For 2-3 days now we've had sporadic storms.  They are all around us.  This means the arthritis is constantly flared up.  Being it is now a few days into this I am starting to get worn down.  I try to stay positive about things.  Tell myself it will get better soon.  Practice my deep cleansing breathing techniques.  Count down the minutes at work till I can get home to take some pain meds.  This also leads to my inner worry wart rearing it's ugly head.

I am realistic that I have a limited amount of time that I can continue working, at least in my field.  I had hoped I could make it about 5 more years to get my kids through college and pay off my car.  Days like today I can't imagine making it through the year let alone through 5.  I also don't know what I want to do when I grow up.  I've had a good run as a Metrologist.  I'm good at what I do.  I am just very aware that every year I am more and more limited of what I can do.  The stiffness in my hands impedes my ability to do many things already, lifting things is difficult and aggravates my joints, and just getting out of bed to go to work is challenging most days and just not going to happen more and more frequently.

I am fortunate that I am a service connected disabled vet.  No not fortunate in that I got hurt in the Army, but that I have options.  I have the option of using vocational rehab through the VA, but what is it I want to do?  What can I do that I won't hate, that I can make a living at, and that I will continue being able to do as my condition worsens.  So many questions to swirl through my pain overloaded brain.

After it's all said and done and I waste hours and days worrying I remind myself that worrying is just that.  A waste of time.  I can't control the progression of my arthritis, I can't control the future.  What I can do is be as productive and positive today as I can be.  Remind myself of my blessings.  My loving and supportive family, a boyfriend who treats me like a princess even when I'm the evil witch, a good job in this horrendous economy, and a sharp mind even on days it likes to throw all the worst case scenarios at me.  I am blessed today.  What tomorrow brings will continue to be a mystery and an adventure.

Ready, set GO......ohhhh now wait a minute....

Here I am again on the couch when I should be at work.  I have been described as bull headed by people who really love and care about me, and that isn't necessarily a complimentary trait to have when you have PA.

We are in the process of reorganizing the lab I work in.  It's been going on all week (I'm pretty sure it will NEVER be done).  Anywho, this reorganization involves a lot of moving of heavy equipment, packing, moving and unpacking files and manuals, cleaning etc.  I refuse to let my coworkers be stuck with all the heavy lifting while I sit back, sip my diet coke and watch.  So I decide to take the lightest weight group, the files.  Yes, I packed 25 boxes about the size of cases of paper, loaded them each on a rolly cart, and piled them in the new designated area.  5 years ago this would have been something I considered a decent workout, but by no means the end of the day.  Just this process took me out for a whole day.  Yesterday I sat on my couch, hopped up on vicodin.  I really hate taking narcotics, but it's an unfortunate necessary evil for myself and many people with chronic pain conditions.  This morning I was feeling pretty good and rested (thanks to 15 hours on the couch)  I even got up early, made myself a pico and feta omelet, sipped on a strong chai tea, and shaved my legs while I took my shower!  Today is going to be a good arthritis day!! 

Once arriving at work I started in with the refiling of all those files.  Box after box I lugged them onto my rolly cart, filed them, flattened the box for the recycle bin, and started the process all over again.  About at box 5 I started noticing the familiar burn.  When I was in the army that burn was a good thing.  It meant you were pushing yourself to the max, building strength and endurance.  Now that burn is the precursor to a bad day.  I could feel my feet starting to swell, my shoulders and hips getting that deep in the joint pain and my lower back throbbing.  Due to that old Army mentality that my drill sergeants so dutifully programmed into my head I pushed through.  By box 10 my fingers were tingling, my toes were seizing up, and my feet had swollen enough that my flip flops were in danger of leaving permanent indentations in my feet.  I was pretty sure railroad workers were pounding those ginormous railroad nails into my hips, and my back could have been the base beat at a rave.  Yep over did it again so off to home we go.

On my way home I stopped at Tom Thumb since my day on the couch yesterday consumed all my bottled water.  Any of you that have spent time in DFW during the summer know that the water stinks when the heat starts rising.  I don't just mean the quality but it actually smells.  Something to do with algae in the reservoirs.  Now I'm not really a water snob.  I've drank out of the tap all over the world and survived to tell the story, but my boyfriend is a plumber and has convinced us we really need to drink bottled water.  All that is really neither here now there, but to say I needed water.  I get a stocker to help me load it into my cart (impromptu walker) and waddle my way to the front of the store. On the way I find Ben & Jerry's on sale (score!) so my slow trip from water to check out felt a bit like a blessing and a curse.  At the checkout the nice young man rings up my water and ice cream and of course asks if I'd like help out.  It always amuses me the expression I get when I say "yes, yes I would".  I probably should be insulted to some degree, but I am blessed with a dry, cynical, and sometimes cruel sense of humor.  I tell him I need help and I can see the almost double take, the scan up and down to see what could possibly be wrong with me, and the thought process across the boy's face that says he thinks I'm just a high maintenance lazy house wife.  There isn't anyone to help me right there so he announces my laziness over the intercom.  At this point I'm ready for a full on show of just how screwed up I am.  The poor kid who ended up helping me was either cursing the 20 minute walk to the 4th parking space from the door or thrilled that he got an extra break for the day.

And now here we are.. On the couch, vicodin consumed, Ben & Jerry's in the freezer missing yet another partial day at work.  Someday I'll learn not to "push through the pain".  Hopefully the Humira I started last week will kick in soon.  My daughter said last night that my skin looks better than it has in months so I have hope!

Info on Humira.. One of the biological medications used for PA.