The daily grind

Firstly let me apologize for not blogging much the last week or so.  I finally received my request for documents from the Veteran's Administration and have been pretty distracted with taking care of that.  I also haven't had any blog worthy things going on in my life.  I feel a bit like all I have to say is negative and that isn't good reading.

I still don't have much to talk about, but I wanted to be sure I did let you all know I'm still kicking.  I'll try to figure out some topics to share soon.

Thanks for hanging in there with me.

You are what you eat

Last week I wrote a blog about the pharmaceutical options on the market right now for Psoriasis and Psoriatic Arthritis.  Today I want to discuss some of the diet based treatments that people are finding some success with.

One thing to remember both with both pharmaceutical and natural/holistic treatments is there really is no one size fits all approach to Psoriasis or Psoriatic Arthritis.  It can take a lot of trial and error to find what will work for you and your lifestyle.  Also remember you need to discuss with your medical professionals if you want to do drastic changes or diet programs to help control your psoriasis and/or psoriatic arthritis.

Many people find they do have food triggers.  It may be a full out allergy or a sensitivity that is causing your psoriasis especially to be triggered.

There are a few "diets" that are popular in the psoriasis community, but the one I hear the most about is Dr. Pagano's diet.  The Pagano Organization has information about the program and Dr. Pagano's books.  The basis of this approach is that the psoriasis is triggered through imbalance in the intestinal tract (Leaky Gut Syndrome).  It focuses on diet to equalize the intestinal tract and improve elimination of toxins.

Another popular approach is to do an elimination diet.  This is more focused on potential food allergies or sensitivities.  Generally it is suggested that you eliminate processed foods and foods that are common allergies such as dairy, gluten, yeast, and sugar.  It is also suggested that you eliminate foods that are most common in your diet.  If you drink orange juice ever morning for breakfast, remove citrus from your diet for several weeks to see if you have improvement.  A few web sites I have found useful in both following an elimination diet and still enjoying my food are The Whole Life Nutrition Kitchen and 100 Days of Real Food.  Many people find that jump starting this elimination process by getting an allergy test done is helpful.  If you decide to start the elimination process with allergy testing be sure to let your Allergist/Immunologist that you are getting the test done because you have Psoriasis/Psoriatic Arthritis and you are interested in isolating foods that are triggering issues for you.  This will allow your testing specialist to be sure that they are including as wide a range of food allergens as possible.

One last route that has grown in popularity in the diet department is the juice fast.  If you have watched the movie "Fat, Sick, and Nearly Dead" you will be familiar with this approach.  If you haven't click on the title and it will take you to Hulu to watch it for free.  This program is about resetting your immue system through flushing it out while consuming fresh juices.  It allows you to maximize vitamin and mineral intake and give your system a break from breaking down food.  The documentary is about the best way to get information about the program.  It's very informational and entertaining.  There is also a web site that is a companion to the movie that helps with following the plan called Reboot with Joe.  Again you need to be sure you discuss this program with your Doctors so that you are being tracked and having your vitals and blood work checked regularly to make sure you are doing this in a healthy way.

Some food components that are not actually a full diet program are to limit/eliminate nightshades.  These vegetables are believed to cause flares in many people with both Psoriasis and Psoriatic Arthritis.  WHFoods.com has a fairly extensive list of nightshades HERE, and LiveStrong.com discusses issues with nightshades and Psoriasis specifically HERE.  Many people also find eating anti inflammatory foods helpful.  DrWeil.com has an interactive food pyramid of anti inflammatory foods to give you a place to start.  I realize that some of the foods on the nightshades and anti inflammatory food chart are contradictory, and can make the process confusing, but this is an area that trial and error really comes into play.

One last thing to note is that drinking alcohol is generally considered to be bad for Psoriasis and Psoriatic Arthritis.  Not only is it advised to stop drinking alcohol when you are taking many of the medications used to treat both diseases because they are very hard on the liver, but many people find it is a trigger for them.

Finally let me say that not everyone will find that adjustments in their diet will improve their Psoriasis or Psoriatic Arthritis.  I fall into that category.  I have tried all the approaches talked about above and had no improvement in my diseases.  That being said I do believe that living our healthiest life possible is good for us.  Even if I don't avoid particular foods I do limit processed foods and eat whole foods for the majority of my meals.  I also try to eat a very well rounded diet with minimal sugars and red meat and a lot of vegetables and fruit.

Finding your food triggers can take months of trial and error, but you can do it at your own pace.  It doesn't have to be everything at once if you are not comfortable with that level of radical change.  Pick a few foods and start there.  Always be sure to keep your doctors aware of your process so they can support you by monitoring your health and possibly referring you to a Nutritionist to help you with the process.  Don't view this as losing all your favorite food choices.  It's just changing some of them and finding new favorites that don't disagree with your body.

I hope this helps you all find some places to start your search for diet changes that might help your life be better.

Sweet nothing.

Tonight's blog is inspired by the song "Sweet Nothing" by Calvin Harris with Florence Welch (of Florence & the Machine).

When my daughter and I were driving to/from Phoenix this song came on several times.  She sang it and was obviously touched by it.  To me it was a good song, but didn't really touch me.  It seemed to be about a one sided relationship which we've all been a part of at some point.  The yearning to be heard and understood.  Wanting to believe when someone tells us they care, but knowing those words are empty without action.

As I was driving to meet my honey for our Tuesday poker night the song came on again.  Suddenly mid song I realized this is what I'd like to scream at the medical community sometimes.  I feel like I'm Florence crying out to be heard, but getting lip service about what is in the future to give me relief in my Psoriasis and Psoriatic Arthritis.  I adore my Rheumatologist and he has done everything available to try to help me.  Please don't think I am referring to him in this feeling.  I am talking about the researchers, pharmaceutical companies, and health organizations that give us hope that feels so empty when suffering day in and day out after trying every ware they've sold me.

I look at my last 10 years of care, and the amount of money that has gone into trying to "cure" me is staggering.  A rough estimate of just my BIOLOGICAL medications since October of 2004 is over $400,000.  That doesn't include prescription pain meds, NSAIDs, DMARDs, topical steroids, inject able steroids, doctor visits, or holistic/naturalistic treatments.  I'm only referring to my treatments directly related to Psoriasis and Psoriatic Arthritis. I did have a little over 4 years I would be considered in remission, but here I am less than 10 years from diagnosis of PsA and I am in full blown unstoppable flare.  Lets call it a half million dollars and I am not cured.  I am not improved.  I am not functioning.  It feels like I've heard a whole lot of sweet nothings.

I pray constantly for myself and anyone who has these diseases that we do have hope in the future, but right now I feel like I'm screaming with a broken heart to someone who has empty promises.

P.S.  We've started a Facebook page for Sausage Toes and Scales!!  If you want to be kept up to date on what's going on come like us! Sausage Toes and Scales Facebook Fan Page

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

The "real" pain scale..

The author of "A Girl With Arthritis" was talking about the question many of us hear every time we go to the Doctor.  "how would you rate your pain based on this 1-10 chart?"  The chart every doctor I've been to really doesn't give much in the way of real life detail.  Here is the pain chart that doctors should use.

Why my nails are always painted.

I was trying to describe to my sister what nail beds look like when they have psoriasis.  My thumb picture is a generally healthy nail bed with the pink (nail bed) and white (nail growth) is fairly smooth and straight across the nail. The pinky picture is my worst psoriatic nail. You can see the bed has detached more than halfway down the nail and the line between nail bed and nail growth is  very jagged and uneven.

Reading a history of me.

I requested my medical records from my Rheum for an appointment I have at the VA next week, and to hand deliver them to the SS office for my disability claim.

I picked them up today and started reading. It was fascinating and terrifying to see my decline over the last 6 years. The last 4-6 months shows an especially exaggerated decline. It was also interesting to see things that my doctors hadn't bothered to tell me. I found I have non reactive arthritis (not uncommon with PsA). I found that the Rheumatologist at least at one point felt I may have Fibromyalgia (was never informed of this and it was never followed up upon or officially diagnosed). I found I have had low Uric acid levels (can be an indicator of MS). I found I have proof of arthritis in my SI joint (never informed of this) and FINALLY diagnosed with arthritis of the right hip after YEARS of trying to get someone to listen to me about the constant pain in that joint. 

I often feel like my Rheum is abrupt. I really like that part of him in some ways because he doesn't poo poo around, but I also sometimes feel like he's not really listening to what I'm telling him about what is swelling, how it's affecting my life, how I am constantly in pain. Reading my records I came to realize that not only does he listen to EVERYTHING I say and record it, but there are instant message conversations recorded in the records of him inquiring about following up with how I am, if I need to come in, why something hasn't happened, and a tone of frustration that I am not having improvement.

Even with living this every day it is really shocking to read through my records and see just how quickly I have declined. I hate that my Rheum is frustrated with my condition (lord knows I am too), but it is somewhat comforting that he is frustrated. It shows he cares about my quality of life and I am not just a number. I knew these things to some degree already or I would have left him years ago, but reading it really reinforced that