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
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!
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.
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.
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
I'm sitting here watching movies, knowing it's going to be an insomnia night. We had some snow here in North Texas yesterday so I'm quite happy to be snuggled up in the blankets my sister made me last Christmas watching old movies on cable.
Something I noticed the last few days is that I keep feeling like my elbow is wet. I'm constantly checking to see if I've got a gushing crack in my elephant elbows. So far it just looks like I've been exfoliating with a cheese grater. I think I'm probably developing some nerve damage in the dermis from the deep cracking I've been having. I will be really glad when I can actually get in to see a Dermatologist. I've run through all my options for Psoriatic Arthritis as far as DMARDS and Biologicals go. I'm now left with the slim possibility of getting Stelera through the Dermatologist. It is having success in Phase III medical trials for Psoriatic Arthritis so hopefully it will actually help both my skin and my arthritis. I'm off to the VA next week to get that whole process started so wish me luck!
I really could use some retail therapy, but I just can't afford it and window shopping is downright depressing. I will however go try my luck this week at playing in a World Series of Poker tourney. A friend of mine won a WSOP ring and a boat load of money yesterday so now I'm inspired to take my chance on one of the smaller tourneys. Again I need your luck!
Well I'm off to watch more hokey 90's movies and wait for sleep to decide to visit me. Have a great week!
As soon as I finished writing this blog I realized I actually was bleeding from a psoriasis crack. Just not from my elbow. UGH!
I have been totally lazy since returning from Phoenix. It's starting to get depressing that I have zero motivation to do anything this week. I can't even blame it on my disease really. Yes, I'm sore and having a bit of a flare. Yes, I'm fatigued and needing naps through the day. Even with that being said I just feel LAZY. I haven't even unpacked my suit cases. They are sitting on top of my dresser with the load of clothes I washed piled up (and folded, at least) on top of them. I need to start thinking like the little train that could and get some chugga chugga choo choo in my life.
I need to give myself a kick in the ass. The fact that it has been raining the last few day doesn't help my urge to get anything done.
Ok enough of my pity party. As I mentioned in my last blog I received a tube of Noxicare that I won in a contest. I am really impressed with it. I've been using it the last few days that I have been having rain pain. The first night I applied it to my left shoulder and right hip. I honestly wasn't expecting much. I've learned to be pretty jaded about the newest greatest thing on the market. My shoulder pain went away fairly quickly. My hip pain however was a bit more stubborn. I didn't lose faith yet because honestly I have quite a bit of badonkadonk if you know what I mean so there is a lot of donk for the cream to work through to get to the actual bursa which was causing me the pain. Before bed I reapplied to the hip area and went to bed. This application did actually help. My pain wasn't gone, but I was comfortable enough to sleep which is something that rarely happens when my hip bursitis gets flared up.
The next day I decided to try a few new spots. My right knee was swelling, and my ankles had become cankles. Keep in mind a dab does it with this stuff. I rubbed it on and went about my couch warming. About 20 minutes later the swelling in both the knee and my ankles had reduced and the pain was gone. I think I'm in love! Finally this morning I woke up to my shoulders being so swollen I was having issues with my hands falling asleep. It was so bad I was getting woken up by that awful tingle during the night. I rubbed some Noxicare into both shoulders and the pain reduced, and I had no more problems with my hands falling asleep.
I highly recommend this for a topical option for pain relief. It uses natural ingredients to reduce swelling and pain, doesn't smell, and isn't oily. It is a bit on the costy side, but a small dab goes a long way so a tube should last quite some time. I'll be adding this to my products I love page!
We have been home for a few days, but honestly I really just wanted to veg after 16 hours in the car. I'm really glad I only have 1 more trek like that to make and it will be moving to Phoenix.
I have a few products to endorse today! First is a cream my daughter brought me to try from Lush. It is called Dream Cream. It is non greasy, smells good/not foo foo girly, and is SO soothing on my psoriasis.
On the non psoriasis/psoriatic arthritis front I have decided I LOVE Trader Joe's Chicken Cilantro Mini Wontons. They are the OM NOM NOM NOM! The green tea mints are also pretty darn great, and gluten free too!
I hope everyone had a safe and festive New Year celebration! I've made a few changes on the blog today. I've added an email subscription option, made it easier to follow the blog through google+, added a share feature with several social networks, and changed to look a bit.
I've done some thinking today about how to proceed with the blog this year. I tried to sign up for ad-sense before I left on vacation, and was denied. I was looking at it as a possible way to bring in a little extra money, but after having some time to think about it I'm glad I was denied. Yes I could use some extra cash flow, who couldn't these days, but I also don't want to promote products or services that I don't have first hand knowledge of or a reliable source as to their quality. I do plan on trying and possibly promoting products this year, but anything I promote will be something you can trust either I or someone I trust has tried first hand. I may at some point add a products I love page to the blog if I get enough things sampled and approved.
I know the last few months I haven't been very active. I hope to improve on that this year. I have several projects I want to do this year, including moving to Phoenix, but maintaining the blog is a priority for me. I will be heading back to DFW Thursday. Once I get home I'd like to make my goal to be 2 blogs a week minimum. I know everyone will understand if once in a while I don't hit that mark, but that is my personal goal.
Please feel free to let me know if you have any suggestions, products you love that I should try for a review, questions, recommendations, or just drop an email or comment to let me know how things are going.
