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

Yeah, I'm plagiarizing myself!

On Inspire today someone asked for people to post their journeys into P and PsA.  I did it and realized that I had never actually written it all out.  SO you all get to benefit from my novel warm up posting.  Here ya go, the journey into Hell...

I was diagnosed with Psoriasis in 1998 after having a bad reaction to a Anthrax Vaccine. Soon after I started experiencing severe bursitis in both my hips. In hindsight this was probably the beginning of PsA. Swelling of the bursa in your large joints is a common start to the damage of the actual joints that happens in PsA. I was discharged from the Army because the swelling and pain in my hips from the bursitis had gotten to the point I couldn't do "soldiering" such as qualifying with my weapon in the prone position, run the 2 miles for my PT test, pass the sit up portion of my PT test because my hip flexors were already starting to be compromised, among others. When I had my VA appointment the Army decided that my P was service connected. I moved forward with life, found a job in my military trained career field, and got the typical creams, steroids and muck that was available for p at the time. Around 2000 I started having many more symptoms that again in hindsight were probably PsA. Pain deep in my hip joints, stiffness of my hands, lower back pain for no apparent reason, fatigue. I went to several Drs and was generally referred to a Orthopedic Surgeon. Of course there was no sign of actual arthritis and was again denoted as Bursitis and given a steroid shot to my hip since it was the most usual place for regular pain and sent on my way. In 2004 I was having a particularly bad P flare and was sent to see a dermatologist. He said it was time to discuss DMARDS and Biologicals, and suspected because of my other symptoms I was very likely actively into PsA as well. He prescribed me Methotrexate and it was like magic! My skin cleared up alot, my joint pain was SO much better, but with that magic came some side effects which were not so pleasant. I was taking the pill form and would be so nauseated for 24 hours after taking my MTX that I would actually have a migraine induced from it. I was also very fatigued, more so than usual. The Dermatologist switched me over to the shot form of MTX and suggested I take it at night before going to bed and have some toast and milk before going to bed as well on MTX nights. This seemed to take care of the nausea. The fatigue was something I decided was a necessary evil to have my beautiful skin back and finally have some joint relief. The magic of course was short lived. About 6 months before the joints started really screaming again. The Dermatologist suggested I go to see a Rheumatologist. The Dermatologist had noted in my records that he suspected that I had PsA already, but I needed a Rheumatologist to make it official. Of course I got one of those Doctors who won't make a call officially until they have hard proof of it. She agreed I did have an immuno based arthritis, and I did have psoriasis, but she wouldn't designate it as Psoriatic Arthritis in my records. Just Psoriasis with presentation of multiple joint Arthritis. This was all fine for me at the moment as long as I was getting the treatment I needed which was biologicals and at this point pain meds. She put me on Enbrel and gave me a script for Vicodin and sent me on my way with check ins every quarter to check blood work and see how Enbrel was helping. Again it was MAGIC! My skin was totally clear in a matter of weeks. I was back to working 60+ hours a week, traveling for work, going out with friends. I was in heaven. Then slam on the breaks! I returned from a few days in Houston and had a fever of 104. I went from fine to pneumonia in less than 24 hours. I have been fortunate with my medical professionals that they are pretty open to inter discussion about my issues so when I went to my PCP for the pneumonia she immediately called my Rheumatologist. The decision was made to stop Enbrel and once I was recovered from the pneumonia to come in to see what to do next. It took me over 2 weeks to actually be functional again. Not only do biologicals make you more susceptible to infection and illness,but it also makes recovery a longer process. I was then started on Remicade with a low dose of MTX. My body has a long history of becoming immune to meds quickly and the Rheumatologist decided we'd use MTX to slow down my bodies natural defense of becoming immune to everything. Remicade wasn't the magic that MTX and Enbrel were in the beginning. I did feel less flared most of the time, but it took about 2 months to really kick in. Slowly but surely my skin cleared, and my joint swelling lessened. I was back to wearing shorts and tank tops. I even wore a swimsuit again! I was dancing, traveling to India for work. Life was looking pretty good. I did eventually get to the point I couldn't tolerate MTX so about year 2 of Remicade I stopped MTX. My body started doing its thing pretty quickly and my Remicade infusions were becoming less and less effective. My Rheumatologist started upping my dosage and frequency, and went back to vicodin for pain as needed. By year 3 I was at max frequency and max dosage of Remicade. I was also needing vicodin at night to be able to sleep because I was in enough pain that I couldn't find a comfortable position to sleep in. Many nights I found the only position that was comfortable even with vicodin was in my recliner. I had my friend move my recliner into my bedroom so at least I could sleep in my room and not be taking over the common living areas of my home with my disease. I also started noticing that my minimal dosage of vicodin wasn't working and approached my dr about changing medicines. I have been using pain meds for bursitis for years and have always stayed on the lowest dose by changing chemicals every few years. The Rheumatologist had a strict policy of no triple script meds. Meaning no narcotics that required hand written scripts in triplicate. I understood her issues with triple script narcotics, but I didn't agree with it so I decided to look for a new Rheumatologist. In the midst of this I had had filed a VA claim for my PsA. Since I was already rated as service connected for P it would be common sense that my PsA was a continuation of that. Right? Uh no, since my Rheumatologist had not put my condition as PsA, but Psoriasis with immuno related arthritis the VA decided that I had Osteoarthritis in my shoulder since that was the only place I had listed on my list of most affected joints that had actual arthritic damage at that point. This is the journey that has lead me to my current Rheum. He is awesome. He kept me on Remicade for about another year, tried several other DMARDS which had never even been discussed with me before, switched up my pain meds for 6 months and then switched me back to vicodin once my body had forgotten about it just as I predicted it would, explored naturistic and homeopathic options with me, suggested dietary supplements for me to try, and has been the best dr I have ever been to. It was finally decided that Remicade wasn't helping my joints and it was time to consider other options. My skin was still pretty clear but my joints were not doing well. He supported my decision to try a natural route for a while as I considered my options and hoped for some other meds to come on the market. I was biological and DMARD free for a little over a year. Again hindsight is a bitch and it was probably a mistake. In that year my P and PsA became very aggressive. The decision eventually made to try Humira. I had a glimmer of hope because my big toe, which was covered with P and cracking, was almost completely clear at the end of week 1. Then came the bad. Right before I was to take my 2nd shot I started losing my hair, I developed sores in my mouth so it felt like I was gargling glass, and I started getting hives. Yep you guessed it, stop the Humira. Now we are up to date. I am currently on Simponi. I have been taking it for about 3 months and it is doing zero, zip, nada. Since starting it I have developed Pustular Psoriasis on my feet, my P has been in constant flare, and my joints are no worse or no better. I have a bottle full of Arava I can start taking, and when I spoke to the Dr's office this morning they said my Hepatitis screening was clear so I could start taking it, BUT it was pointed out that I have been gasping. Apparently I have been doing it for a few months. The boyfriend noticed it was pretty bad this weekend and asked how long I had been having "shortness of breath". He said he had noticed it occasionally for a few months, but Friday it had started to get very noticeable and worrying. He wanted to take me to the ER. I of course said "I just need a deep breath every once in awhile! I'm fine! I used to be an athlete, I know what shortness of breath is! This isn't shortness of breath! You're stressing me out (deep gasping breath)" Ok called the Dr this morning and have an appointment on Thursday to see him and get poked prodded x rayed and scanned. 

Rub a dub dub, I'm blogging from the tub.

Yes, today's blog is brought to you live from my bathtub   Today was the second day I have had to come home because of arthritis.  My knees, feet, hands and back are the culprits today.  My hips hurt as well, but it feels more like that is bursa related than arthritis related.  It's sad I've had these afflictions long enough to actually be able to differentiate types of pain.  I've been passing a lot of time this afternoon reading some older posts on Inspire.com and a constant theme, especially with the Psoriasis group, is the food vs medicine debate.  Some posts are nearly fanatical about it.

I thought I would give some of my personal experience in that area.  Having had psoriasis as long as I have, I have probably tried just about every OTC, prescription, and alternative method I've ever read.  I have done many of them for PA as well, but it's still in the trial and error phase even with almost a decade of affliction.

I'll start with some background.  I was diagnosed with psoriasis in 1998 after a bad reaction to taking the Anthrax vaccine while in the Army caused my immune system to go into hyper drive. At that time there was still very little known about psoriasis to include causes and treatments.  The general route of care was topical agents such as lotions and steroid creams.  Occasionally for a particularly bad flare up a steroid shot would be administered.  Tar was a big seller to the psoriasis crowd and it did give many people, myself included, some relief.  At the time I was diagnosed I had a pretty healthy diet and I exercised more than regularly.  I did smoke a lot and drink alcohol regularly.

So there you have the beginning of the journey which I will be on for the rest of my life.  I couldn't give you names of all the prescription topical treatments I have tried.  If it's out there and legal I have been prescribed it and used it.  I have been on every biological available for Psoriatic Arthritis.  Enbrel worked awesome on my psoriasis (didn't have arthritis diagnosed yet at that time), but it depleted my immune system so much that I went from never getting sick to pneumonia that took me out for 2 weeks and getting every cold and viral malady that passed within 100 feet of me.  Methotrexate worked well on it's own and in combination with Remicade, but started making me very sick so I quit taking it.  I had a really good 5 year run on Remicade and it stopped working on my joints so I decided that the benefits no longer outweighed the risks.  I was biological free for a little over a year and sustaining some level of comfort some of the time with Vicodin.  Then my arthritis kicked into high gear.  I tried a run with sulfasalazine to avoid going onto Biologicals again, but it did nothing.  Tried methotrexate again, but I was living next to the porcelain god for at least 24 hours after taking my shot from that.  My skin was already thrashed and cracking, but the arthritis attack was what sent me back to biologicals.  Humira started working on my skin almost immediately, but about a week into it I started losing hair by the handful,  getting mouth sores so severe it felt like I had been eating glass, developed hives and some other rather nasty side effects.  My Dr took me off that and now I am on the last hope which is Simponi.  My side effects have been generally mild, nausea, dizziness, but I have also not had any improvement of my psoriasis or arthritis.  The psoriasis is actually worse than when I started.  I have resorted to using a topical steroid to get minimal relief from the cracking and bleeding, but I itch like I've been rolling in poison ivy.  I also got a TDAP vaccine which took me out for most of a week from work because of getting almost all of the potential "mild" side effects.  Mild my ass!  I think that pretty much covers the pharmaceutical side of things.

In this whole process I have tried the holistic treatments with mixed results.  Dead sea salt, occlusion with natural nut butters and oils, high doses of vitamin and mineral supplements, and food exclusion.  I am very fortunate to have a forward thinking Rheumatologist who is willing to work with the treatments you want to pursue.  He is knowledgeable of both pharmaceutical and holistic treatments out there and even has some alternative treatments he'll let people like me who are at the last option try.

As for diet I've tried most of those too.  I've done paleo, juice fast, all whole foods, all raw foods, exclusion, and many more.  For me I don't seem to have food triggers.  I do feel better when I eat a well rounded diet with minimal processed foods.  I try to stick with organics, local meats, produce, dairy and honey.  I love food so for me turning what is available to me into something fantastic is an adventure.  It doesn't however improve my psoriasis or my psoriatic arthritis.

To the people out there who swear by diet controlled psoriasis, I am so glad that you have found relief.  Perhaps though the reality is that your psoriasis is just like the rest of us in that it is immune related and you are ALLERGIC to foods.  Rather than hives or stomach upset your immune system responds with psoriasis. Each of us with psoriasis and psoriatic arthritis have some reason that our immune system has begun to attack us.  Not all of us are food.  That some of us are food issues is really a blessing.

At the end of the day my take on drugs vs food is that both are vitally essential for us to live the best life we can.  You have to feed your body healthy food to be as healthy as you can be.  For some, like me, being healthy as we can be still means arthritis flares (and arthritis all the time) and psoriasis everywhere.

And Wheeeeeeeee

I took the first dose of Simponi last night.  So far no severe side effects.  Some nausea, dizziness,fatigue and the expected arthritic flare.  All these are on the box so not shocking.  Also all are what I would consider mild side effects as long as they don't last long.  I'm not sure at what point and time I would say the lingering effects would be considered long standing, but for the moment I'm not concerned or overly uncomfortable.  I did come home from work at lunch because I was mildly worried about the dizziness in that I didn't want to have a strong spell of vertigo and end up on the cement floor or head first into my desk.  I felt sitting or laying solidly on my couch was probably the safest place for me.  If this medication does work I will gladly give up a day or two of feeling generally yucky for 4 weeks of feeling generally better.  This was the case when I took Remicade. 

Me getting remicade.

Remicade is an infusion.  This means it is delivered via IV.  I would go every 4 weeks and spend 3 hours with my favorite infusion nurse.  The doctor's office had fairly comfortable recliners or cushioned rockers to "relax" in while hooked up to the drip.  With me, I usually started feeling my side effects within 20 minutes of the drip starting.  Remicade would literally take me out of commission for at least an evening.  I would be exhausted and almost instantly would have a arthritic flare.  It was worth giving up a day of my life every month to have relief with both my arthritis and psoriasis for about 25 days.  The last few days before my next infusion was due were tolerable, and knowing that relief was coming made them even more so.  Remicade also seemed to slow down the progression of my arthritis.  When I started it I had mild arthritis in my hips, lower back and left shoulder.  Not to say mild in that it didn't affect my quality of life or my functionality, but that it was not debilitating to the point it was keeping me from working or living most the time.  While I was on Remicade I had almost no psoriasis and I didn't develop any new arthritis.  The flares were greatly reduced in my pre existing arthritic joints, and I was able to have a generally active life.  Remicade worked well for me for about 4 years.  The last year I was on it the  results were shorter lived on my arthritis.  It was still working wonders for my psoriasis, but my joints were not so lucky.  The length of time I was having relief seemed to be shorter and shorter till I was getting some relief for about a week and then have aggressive flares through the other 3 weeks.  The arthritis started to find more joints as well.  That was the point that I decided that the risks were out weighing the benefits and stopped taking it.

I hope Simponi will have a similar effect.  I don't mind a little discomfort to receive a lot of relief as long as the relief outweighs the discomfort and the potential long term effects of taking biological treatments. 

I share this for anyone out there considering biologicals.  All of them are impressive medications.  Finding the right one for you can be a bit of a roller coaster ride, but if you find one that works it can be amazing to have more of your life back. 

I also wanted to mention something my mom located and informed me about.  Chronic Disease Fund offers assistance with medications, patient care, and transportation and lodging assistance in connection with disease care.  It is worth a look see for anyone having trouble financing their medications and care.  They have a list of conditions and medications they assist with and show which of those they have openings for at this time for new patients.  

Finally I leave you with some classic Gonads and Strife.  And WHEEEEEEEEEEEE......

It puts the lotion on its' skin or else it gets the hose again...

Happy Saturday!  A little "Silence of the Lambs" humor with my tea and morning smoke.  I'm sitting on my patio with FAB (Fat Ass Bitch aka Thunder the cat) enjoying a "cool" August Texas morning. As I'm telling her to stop chasing the geckos I look down and realize my big toe is somehow different. Still being a bit flared up from yesterday's arthritis bout my flexibility is pretty limited, but my lasik perfected eyes definitely notice something.  I sit in my chair, and lean over to get a closer look.  OH MY GOD! There's NO Psoriasis on THAT toe! 

Now I realize to those of you who don't have Psoriasis and just read this to be amused by my comical musings that this may not seem like such a big deal, but this is HUGE.  I have Psoriasis everywhere and I mean EVERYWHERE.  Of the 4 main recognized forms of Psoriasis I have 3 at any given time and often all at the same time.  This toe a week ago was covered in scales.

 Most of us have had acne at some point in our lives.  Imagine you suddenly woke up one day and you were broke out in the worst way ALL over your face.  I don't mean that monthly geyser you get on your forehead, or the occasional spot because you're stressed or have been eating too much fried food.  I mean everywhere.  You try everything to get rid of the acne.  You do all the over the counter and old wives tales.  Your friends send over the witch hazel, aspirin masks, advise you to drink more water.  You even go to the dermatologist for the $100 cream that clears everyone up.  All this and nothing improves.  You go months, years with the zits of Olympus all over your face.  Your friends are kind enough to look past it, and still offer some nugget of advice they happen to run across on the Internet or see on a late night commercial.  Even with all their support and good intentioned advice you can still see the pity in their faces.  You still are mortified to look at your own face even with a level of acceptance that it isn't your fault and there really isn't a lot you can do about it.  Now one day your doctor calls and announces the newest greatest medical breakthrough of all time.  He tells you all the great and wonderful things about it.  It will clear up your face, it will keep you from getting another volcanous breakout, and you only have to do it once a week. Oh boy this sounds awesome!  I gotta have this!  I may have some scarring to cover up, but I might just get my beautiful face back!  So you agree that this is the thing you must have.  Now comes the bad news.  Firstly, you will have to do this medication for the rest of your life or till your body decides it just doesn't like it anymore.  Oh and then there's the cost.  It's a mere $1000 a treatment and your insurance only covers 80%. Yes that's $1000/wk.  Then come the potential side effects.  It is really hard on your liver, your risk of infection is increased a lot, it can cause blood cancers with prolonged use.  That's just a few on the shopping list of horrors.  You think about it long and hard and decide it's worth the risk.  You invest in the first month of treatment and hope for something, anything to improve.  Then about a week into your treatment you notice that the whole section from the edge of your eyebrow to your ear is completely clear of zits.  Most people won't notice the difference because there is so much eruptive pus on the rest of your face, but YOU notice it, and it's HUGE.

This is kind of  how it feels to realize I have no psoriasis on my big toe.  I started Humira a little over a week ago and it's the first real indication it is causing an impact on my condition.  This isn't my first ride on the Biological roller coaster.  I have tried Enbrel and it was too devastating on my immune system so I would get pneumonia every time I heard someone sneeze. Even if it was over the phone.  I had a successful run with Remicade for about 5 years.  It stopped working on my joints even at the max dose and frequency so I decided it wasn't worth the risks.  I've been biological free for a little over a year and the Dr thought we should try Humira.  I haven't noticed any bad side effects yet so that's positive.  I do miss my Jack and Diet Coke, but if it will help I'll sacrifice that until we find out how it's messing with my liver.  This is my last option for biologicals.  There is one more on the market, but it's still pretty new and my insurance won't cover it yet.  Essentially it's my last hope for a while. 

Here's to hope inspired by my big toe!  What a beautiful big toe it is!

Information on Enbrel 
Information on Remicade