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Autoimmune Humira It's Just A Bad Day Medication Mental Health Methotrexate Mind Body Connection Otezla PsA Stanford Medx Symptoms Treatments

The Ultimate Resource For Managing Psoriatic Arthritis

My LONG psoriatic arthritis story summarized: In 5th grade, I had my first knee surgery. My meniscus was ripped, flipped and separated from the bone. My orthopedic surgeon back then said it was most likely something I was born with and I injured it from dance and softball. But, from that point on it seemed like I always had issues with my knee. Year in and year out, I was in therapy for knee pain, some problem or in the OR for a surgery. In middle school, a rheumatologist said that I “might” have psoriatic arthritis, but since I wasn’t even through puberty yet he didn’t want to put me on heavy-duty drugs. Since there was no definitive test, he wasn’t 100% positive. This was the mid-90’s and biologics had just come out as well. I’m not even sure they were indicated for juvenile use yet!

Fast forward to when I was 27 years old. I was working and started having problems again with my SI joint and knee. Through the years, I had just become accustomed to these things. But, this time it got to the point where my knee swelled up so much it locked. I ended up having 2 back to back surgeries that ultimately resulted in a week-long hospital stay. It was during that hospital stay that I was “officially” diagnosed with psoriatic arthritis.

So if you’re being technical, I was diagnosed in 2012. But, if we’re honest, I’ve had psoriatic arthritis since I was little. I just didn’t have a name for all of the different symptoms I was experiencing. Now it’s SO extremely easy to look back and connect the dots. All those surgeries I had – meniscus, baker’s cyst, plica (to name a few). All those aches and pains. All the other “one-off issues” like sciatica. They all point to psoriatic arthritis and chronic inflammation.

In 2016 I had the chance to present my patient case study at Stanford Medicine X. Watch my “Patient case study – My data. My research. My results. How I used my own data to create a precision medicine approach to my autoimmunity” presentation replay here.

Through the years, I’ve picked up many different tools in my Psoriatic Arthritis toolbox. I started my blog a few years ago to connect with others who were going through similar situations. On top of writing in this blog, I also write for other online sources as well.

The following resources are posts and articles that I’ve written over the past few years. My hope is that you read as many as you like. Let this information help guide you to talk to your doctor, make informed decisions and to live your best life possible! And make sure to share them with your psoriatic friends as well. Sharing is caring 🙂

If you’d like to read the story of what led up to my 2012 – 2016 disability leave and me starting my blog, click here. All of the blogs link to one another and you’ll be able to go from one to another easily!

 

5 Parts to Managing My Psoriatic Arthritis | Ask Juls "Did an elimination diet help you manage your psoriatic arthritis?" | itsjustabadday.com Julie Cerrone Holistic Health Coach & Autoimmune WarriorManaging My Psoriatic Arthritis 

One of the best series I’ve done on my blog is “Managing My Psoriatic Arthritis”. This series was created after having been asked the question “Did an elimination diet help you manage my psoriatic arthritis?”.

Short answer – YES

Long answer – YES, but I’ve also done a lot of other things as well to help manage my condition. I focus on the following 5 areas to help manage my psoriatic arthritis.

Part 1: Elimination Diet

Part 2: Supplements

Part 3: Toxins

Part 4: Meditation & Mindfulness

Part 5: Yoga & Movement

I suggest you start with reading those posts.


Your Psoriatic Arthritis Healthcare Team

Not sure who should be on your healthcare team to manage your psoriatic arthritis? Check out these posts to help you decide.

Building Your Psoriatic Arthritis “Dream Team”

Searching For The Right Psoriatic Arthritis Doctor

Psoriatic Arthritis Treatment: How Involved Should You Be?

Take Charge Of Your Doctor’s Appointments


Medication For Psoriatic Arthritis & Psoriasis

Here are the medications that I’ve taken for my psoriatic arthritis. The only one that’s not on the list is Vicodin. Apparently, I’ve not written about it? I’ve used it for pain management purposes.

Approved Biologics & Biosimilars For Psoriatic Arthritis 

Biologics vs Infusions For PsA

Is It Time To Change Your Psoriatic Arthritis Treatment?

Psoriatic Arthritis & Biologics: What You Should Know

Biologics vs Biosimilars – Do You Know the Difference?

How Many Medications Are Too Many?

Methotrexate

Humira

Otezla

Neurontin

Ativan


Managing An Autoimmune Condition Holistically - PART 2: Supplements | itsjustabadday.comSupplements For Psoriatic Arthritis & Psoriasis

I truly believe in the power of supplements. I believe that they can help increase your medication’s efficacy and truly put you on the path to healing. Work with your own doctor’s to decide which are right for you. I’ve worked with functional medicine and natural doctors to come up with my plan. 

My Current Supplement Regiment 

9 Supplements For Psoriatic Disease

My Journey Towards Managing Psoriatic Arthritis Sans Medication

Doterra Deep Blue Complex

Supplements I Took in 2015 

GMOs In Your Supplements


Ask Juls -What The Best Diet To Follow? | Spoonie Holistic Health Coach itsjustabadday.com juliecerrone.com Chronic Life SpoonieDiet For Psoriatic Arthritis & Psoriasis

This is a topic near and dear to my heart. I truly think diet is an important tool that everyone MUST consider when they have a chronic condition. Here are just a FEW of the articles I’ve written through the years.

What Is the “Perfect” Diet?

Elimination Diet – What, How & Why?

Healing From The Inside Out

How My Diet Has Evolved Over The Years

Why Diet Is So Important In Fighting Psoriatic Disease

What You Need To Know About Elimination Diets Part 1

What You Need To Know About Elimination Diets Part 2

Elimination Diet for PsA

Can You Cheat On Your Diet?

Cauli-Rice & Chocolate Chip Cookies

Chia Seeds & Salmon

4 Diet Makeover Ideas For People With PsA

Foods To Avoid When Living With Psoriasis

How A “Vegan Paleo” Diet Can Help Your Psoriasis And PsA

Easy Go-To Meals

Travel Snack Ideas

101+ Holiday Recipes

There’s More To Meatless Monday Than Cutting The Meat!


The Ultimate Resource For Managing Psoriatic Arthritis _ itsjustabadday.com Medication, diet, yoga, supplements, toxins, alternative therapies (1)Managing Flare-Ups Of Psoriatic Arthritis & Psoriasis

There are so many ways to manage your symptoms and flare-ups. Here are posts directly related to how I manage mine. 

Combatting Psoriatic Arthritis Flares With Food

Your Psoriatic Arthritis Survival Kit

My Go-To “Alternative” Therapies

Chronic Pain Management

Fatigue: How Can I Increase My Energy?

Sleep On It

Weather & PsA

Acupuncture – Part 1

Acupuncture – Part 2

Reiki

Massage

Nerve Blocks

 

Hand Pain & Stiffness

Dealing With “Arthritic Hands”

10 Tips For Managing Hand Pain & Stiffness

Exercises For Hand Stiffness And Pain

 

The Real Truth Of Flare-Ups

Am I A Failure?

PsA Flare Up & How I’m Managing

How I Manage My Symptoms When I Am Flaring


Living Live With Psoriatic Arthritis & Psoriasis

You truly can still live an amazing life with psoriatic disease! Don’t take my word for it, check out these posts.

Chroniclife Hacks: My Daily Modifications For Psoriatic Arthritis

Transitioning Back To Work Off Of Disability

Traveling With Disabilities

5 Social Life ChronicLife Tips

Chronic Pain Scale

Is Your Life In Balance?

To Feel Supported, Support Yourself

Sharing Is Therapeutic 

Primary vs Secondary Food

Releasing & Forgiving

Things That Make You Happy

5 Stages Of Grief & Loss With Chronic Illness

3 Tips For When You Feel Like Giving Up

How Life Changes

We Are Not Defined By Our Diagnosis

You Talk Like You Were Once Great

Honor The Crazy Life Journey You’re On

Disliking The Way You Handle Emotions

Healing In The Right Time

3 Steps To Open Yourself Up To Healing

I Wish I Was In The Hospital

Taking Care Of You When You Need It Most

Your Health Is Your Fulltime Job


Mindfulness & Meditation For Psoriatic Arthritis & Psoriasis

I really believe that being mindful and adding meditation to our days helps our bodies heal and relax. Here are my suggested resources for you!

3 Breathing Exercises For PsA

5 Ways To Incorporate Mindfulness Into Your Day

How Mindfulness Can Help Your Psoriatic Arthritis

4 Tips To Help You Stay On The Move with PsA 

The Best Exercises For PsA

An Easy Way To Add Meditation To Your Day

Balancing Mind, Body & Spirit

The Fastest Way To Healing Is Through Your Breath

Mind-Body Connection 

Mantras For Healing

Get Some Headspace


Yoga at Cool Springs

Yoga For Psoriatic Arthritis & Psoriasis

I went from not even being able to put weight on my left leg for months to teaching yoga classes. We have to move at our own pace and honor our body. Modify your practice as you need to. I highly suggest hiring a personal yoga instructor at first to help you figure out modifications that will work for your body. 

Yoga- An Important Treatment Aspect For Psoriatic Disease 

Why Yoga Could Be Part Of Your Strategy

How Chair Yoga Helped Me Handle My PsA

Full Chair Yoga Video Practice For Mobility Issues

6 Chair Yoga Poses For Your Psoriatic Arthritis

Poses For PsA: Chair Yoga Sun Breath Sequence

Chair Yoga: Modified Standing Postures for PsA

How Can I Get Into Yoga?


Loving Yourself With Psoriatic Arthritis & Psoriasis

You only get one body – so treat it kindly and love the crap out of it!

6 Ways To Love Yourself Despite Psoriatic Disease

3 Ways To Get More Vitamin L In Your Daily Diet

5 Dating Tips For Singles With Psoriasis

Dating On Disability

8 Negative Thoughts About PsA And How To Overcome Them

Life Never Goes As Planned – That You Can Plan On

Accept Yourself Where You Are

As You Start On Your Way, The Way Appears

It’s Easy To Be Positive When Everything Is Good

Show Some Love, People!

Loving Your Body

Love How Far You’ve Come

Accept Where You Are In Your Journey

Miracles, Love and YOU

2 Tools To Remind Us We’re All The Same


I am strong.I am powerful.I have an invisible illness that won't hold me back! Invisible Illness Week 2015 #Spoonie #chroniclife #Psoriatic #ArthritisPosts To Share With Your Friends To Increase Awareness

Here are posts that you can easily share with your friends and family members to let them know what you’re going through. Sometimes explaining it to them isn’t the easiest!

5 Ways I’m Suffering With PsA And You’d Never Know

10 Tips To Ensure You Receive The Support You Need

Managing Social Relationships With Psoriatic Disease – Educating Your Friends And Family

We Need More PsA Awareness!

Not All Disabilities Are Visible – My Experience With TSA

30 Things About My Invisible Illness You May Not Know

My Fight Song – Psoriatic Disease Bloggers Remix

No Rest For The Spoonie

Don’t Judge My Handicap Spot

Illness Is Not Only Tough On You, But On Your Loved Ones As Well


Personal Story With Psoriatic Arthritis & Psoriasis

Here are a few posts of my own personal story for your reference. 

What Makes Me PsoStrong?

“I went Undiagnosed For 17 Years”

My Christmas Wish Was To Walk

How Psoriatic Arthritis Helped Me Discover Whole Health

Psoriatic Arthritis Isn’t Who I Am

5 Take Aways From Conquering Personal Challenges

Speaking At The FDA On Behalf Of Psoriatic Disease Patients


Learn From Other’s Psoriatic Arthritis & Psoriasis Stories

I think learning from each other is so important. Check out these links and stories from other psoriatic arthritis and psoriasis patients living their best lives!

Memo to Me – Psoriatic Arthritis Patient Stories

Memo to Me – Psoriasis Patient Stories

20+ Arthritis Bloggers To Follow

Psoriatic Arthritis Interview With Dr & Patient

Dara Torres Interview

LaLa Anthony’s Interview

 

Wishing You A Pain Free Day!

Julie Cerrone, Certified Holistic Health Coach, Yoga Instructor, Patient Empowerer, Autoimmune Warrior (Psoriatic Arthritis), Avascular Necrosis, Complex Regional Pain Syndrome | itsjustabadday.com

Categories
Autoimmune AVN Humira It's Just A Bad Day Methotrexate PsA Regenexx Regenexx

Months 6 & 7 Post Regenexx

It’s been 7 months post Regenexx. . . Saaaaaaaayyyyyyyy whhhhhaaatttttttt?!!?!?! I still can’t even believe I had the procedure done!! I swear I’m still pinching myself thinking about it. (Catch up with my last update from 5 months here!)
There are two topics I want to give you an update on – my avascular necrosis and how it’s healing and my psoriatic arthritis.
Avascular Necrosis
As I told you in my month 5 update, I’ve been gradually doing more and more and more! Month 6 started football season and I’ve attended 4 or 5 games so far this year. In the past few years, I think I’ve attended that many collectively. 2013 I hardly went to any games because it was just too much walking. 2014 I went to more and we figured out an easy way to get up and down from our seats without having to walk the whole stadium. And this year, I’m back full force into the swing of being a football fan. Going to football games is one of my favorite activities. I love the atmosphere, the game, being with whoever I go with – I just absolutely love it all.

In every day life, I continue not to use my crutch, but I do take 1 crutch when I go to the football games. Those days always involve A LOT of walking (for me) – and in big crowds. I take it also as a visual marker for people to realize that I may not be able to keep up – and having that visual also allows me to use the elevators and such with no questions asked.

I’ve thought a lot about it . . Do I really need to take it with me? Eh, probably not. After all the walking I’ve never had swelling or pain, therefore I know my knee structurally is holding up just fine. But mentally it helps me a lot. And, healing is definitely a holistic event, so keeping my emotions in check and my stress level low is ESSENTIALLY!

The biggest development to come out of these 2 months is my 6 month MRI scan.

So funny story. . .

Pretending to be an MRI tech, me pulling up my scans and looking to see how things have changed over the years with my avascular necrosis
Pretending to be an MRI tech, this is the result of me pulling up my scans and looking to see how things have changed over the years with my avascular necrosis. You’ll notice that September 2012, there was nothing wrong with my bone. You can see that December 2012 all the light, white parts are fluid showing something seriously wrong. By March 2014, my blood thinner injections helped to start to heal and foster a healing environment. But when I looked at September 2015, I thought “Well shit. March 2014 looks better than my most recent MRI!”

I went to get my MRI done at my favorite MRI place at the end of September. (Most people have a favorite MRI place, don’t they? JK! haha) After the scan, I asked if I could look at my films real fast. The tech wasn’t super excited about it, so I just stole a quick glance at the pictures that were up on the screen. And what I saw (or at least thought I saw) was a MAJOR improvement! I got the biggest smile on my face and left that office SO SO SOOOOO happy.

Because I always want to know exactly what’s going on, I went home and pulled my films up on my computer. I spent some time going through my last several scans, comparing the AVN. And guess what? It didn’t look any better at all . . . in fact, I actually thought my most recent scan looked the WORST out of all of them.

Going into my scan I honestly didn’t care if it showed that nothing changed. I knew there were major changes because I FEEL the difference. I’m walking, without pain! I’m not losing sleep because my leg feels like it’s on fire. I’m off all my pain meds and doing really well. Going into the scan, I told myself I wasn’t going to allow my MRI scan to dictate how I felt about how the procedure was going because I was doing AWESOME.

But if I’m honest with you, I started to feel really upset.

I knew deep down I didn’t care if there weren’t any changes, BUT having left the office thinking it looked great and then, upon further inspection, realize that it actually looked WORSE… I wasn’t too happy about it. I spent a good hour or two dwelling on it. WHAT THE HELL?! HOW COULD THIS BE?! I showed that comparison picture to my family and a few friends and they also confirmed what I was thinking – it didn’t look any better. But then my Dad talked some sense into me. He reminded me I wasn’t an MRI tech and I couldn’t read MRIs (haha! shocker?!). Based on the way I was feeling, there was no way it could look worse.

Avascular Necrosis in my Left Femur (knee) MRI Comparison Post Regenexx Procedure Showing 40% Bone Regeneration
Avascular Necrosis In My Left Femur (Knee) MRI Comparison Post Regenexx Procedure Showing 40% Bone Regeneration. This view you can see the bone MUCH clearer. You don’t see all the inflammation like the other view (above). You’ll notice on my Sept 2015 MRI that the bottom of my bone has completely regenerated, almost like my bone is engulfing the dead part! This is GREAT news because it means there is a slim chance of my bone collapsing now!!!!!!

He was right. So I put it out of my mind and decided not to worry about it until I talked to my Doctor. When I talked to Dr. Pitts about my films, he started off by saying it looked 40% better! 40% BETTER? HOW SO? The films I was looking at didn’t look 40% better. And then he went on to say that at first glance, he didn’t see any changes- in fact, it may have looked a little worse. I let out a big sigh of relief, because I wasn’t crazy! He continued by saying that he and the other Docs had a pow wow and looked at a few other views. The view that I had been looking at (and that he looked at at first) showed a lot of edema in the bone. Meaning, there was lots of swelling. But, that swelling indicates healing and the bone still looks very active. So, although your best chance of regeneration is within the first 6 months, and you can still see improvements up to a year out therefore, I can anticipate a little bit more regeneration within the next few months.

My pain level from the AVN is truly nonexistent at this point. The only thing that still does bother me is my extension to flexion. My knee doesn’t bend smoothly and it makes an audible crunchy noise. Dr. Pitts said that nothing looked structurally wrong with my knee (on the MRI) – my meniscus looked good and he didn’t think it was anything to be worried about. But of course, our conversation was via the phone so he was unable to access me. He did suggest if I felt like it was something to address that I should go see a local orthopedic. Back when I was in therapy, my therapist told me that it was ok, that it was just a muscle that was tight which was causing the noise. And, because I have arthritis – osteo and autoimmune – I could anticipate never having a “normal” knee. I feel like I will make an appointment to get it checked out – even if it’s just for piece of mind!

 

September 2015 6 Months Post Regenexx MRI
Yes, of course I had the tech take a picture of me getting my MRI 🙂

So, what’s the plan now?

Stay the course, don’t change anything. Keep working out my knee the way I am. Weight bearing exercises are going to help with the bone regeneration, therefore I have to continue to keep moving and working on building my tolerance up. I still haven’t been walking long distances because I was on crutches for 3 1/2 years – I have to ease into it. But, I am walking more and more each month. I will get an MRI in another 6 months (so 1 year out from the procedure) to see how it’s changed. The great news is that it’s definitely getting better and not worse. That my knee is stable and I don’t have to worry about it completely collapsing. And I’m not in constant pain anymore!!!

If I would have seen Dr. Pitts in person, I probably would have kissed him because I’m so happy with how it’s been recovering. This past week, I attended the Woman’s Health Conversations in Pittsburgh and had the opportunity to talk one on one with a doctor here in Pittsburgh who performs Regenexx procedures. I had gone to their office a year ago, but they weren’t performing the bone procedures yet. In fact, the Doctor had just finished his bone training this past weekend and told me that they are going to start performing them here in Pittsburgh!

Anyways, so I was so excited to talk in person with someone about the Regenexx process. Someone who’s helping change the lives of so many people with stem cells. We talked for about an hour and I walked away mind blown. Stem cells are changing lives people! And, unfortunately, they’re not going to be covered under insurances any time soon. They truly are a game changer. I’m willing to state on record, that if stem cells were covered by insurance that the majority of joint replacements would stop, major surgeries would become less invasive and people would have better outcomes. I truly, truly truly believe that. And, because of that reason, I’m sure it’s going to take a hell of a long time for insurances to cover the procedure. Which is a real shame.

Psoriatic Arthritis 

Back in February, I had to go off my Humira to get my procedure done. So how am I doing off of it?? Wheeler, I’ve been doing really, really well off of the biologics!!!

I’ve weaned off of all the medication I was on and current am on ZERO prescription drugs! I do take a grandma sized pill-box of supplements, but no prescribed medications. I had my blood work done in the summer and my inflammatory markers stayed exactly the same as they had been when I was on the Biologics weekly.

Background: to control my Psa I first started on methotrexate. I was on that for 2 months before I added the Humira bi-weekly. I took 7 methotrexate pills/weekly for 9 months and then called it quits. I know no one has a good experience on methotrexate, but I was having more bad days than good on it. So I went off of it. Then 4 months later, I switched up my biologics to taking an injection every week. I decided to do it weekly because I felt the effects of the medication wearing off midway into the second week between injections. I continued that regiment for another year. I really credit the biologics for helping me reign in my disease. Then, with the help of dietary and lifestyle changes, I was able to start to decrease me inflammation. I could have never done it without the meds. They were heaven-sent!

To be able to get the stem cell procedure, and to have it work effectively, I was cautioned to go off of my biologics. By design, biologics suppress the immune system therefore suppress the stem cells. So, I went off of it and was nervous, but excited. I felt Iike the timing was right and had I tried it any other time it wouldn’t have worked – My inflammation would have been too out of control. But! With my dietary changes, I truly started to feel even BETTER as the months went on without the biologics.

September was my 30th birthday and I won’t lie – I celebrated. I drank a lot of wine, I ate lots of gluten-free, dairy free (but not sugar-free cake). And guess what… I totally paid for it. A week after my birthday I broke out with what I’m 100% convinced is a psoriasis plaque on my forehead. I’ve never been diagnosed with psoriasis, but I’ve always had these 2 mysterious “dry patches” show up throughout my life. And they’re always in the same place – on my forehead and on my left boob. Also, I get many of them around the hair-line. My doctors always had different reasons for them. Some said it was a fungus I picked up at the gym or at the hotel. Others said it was just dry skin and it’d go away. I tried ointments, antibiotics, lotions, everything. Nothing makes them go away. Nothing. And this time is no exception!

Anyways, I thought it was interesting right after I went on a sugar binge I got this skin manifestation on my forehead. As October unfolded, I ended up getting a horrible virus that caused me to have double pink eye and a sinus infection. Oh, and as the virus has been dying, it’s been depositing immune cell clusters into my eyes causing them to be painful, super light-sensitive and blurry. Fun stuff.

Oh yeah! And I wore wedges for the first time. It didn't bother my AVN, but my hips and legs were SUPER sore after walking in them. I don't think my PsA liked it too, too much. Will limit wearing them in the future - but it's been a LONG time!!
Oh yeah! And I wore wedges for the first time. It didn’t bother my AVN, but my hips and legs were SUPER sore after walking in them. I don’t think my PsA liked it too, too much. Will limit wearing them in the future – but it’s been a LONG time!!

A month after my birthday, the patch on my head seemed to maybbeeeee be going away. And I thought yay! Good.  But then I realized the patch on my left boob has reappeared. Yay, noooooo :-/ damn it. I had really tried to abstain from sugar all October and I thought I was getting better than worse! The last 2 weeks I have been having knee pain, but it’s not AVN pain – it’s definitely psoriatic arthritis related. No doubt. Whenever I have red meat my knees ache and if I have more than a handful of enjoylife chocolate chips or 2 glasses of wine, sugars make my knee hurt.

I’ll admit, I’m being a bad patient at the moment. I was supposed to get blood work done in September, but forgot. I was going to get it done in October, but the last few weeks I’ve been so sick and I knew that with my virus my inflammation would be up therefore getting my blood tested wouldn’t be a realistic reflection of my PSA. Ok, so now that I’m writing this out there and being held accountable, I’m making it a priority to get my blood checked within the next week.

So long story short. I was doing really, really well off my biologics, but the last month I’ve broken out in a little bit of what I believe are psoriasis patches and my knee has been hurting. This is horrible timing too because the holiday season is coming up and I’m going to want to cheat on my diet (cheating meaning eating some sugar). I’m going to have to go super strict again with abstaining from sugar – even natural sugars. That’s the only thing I always seem to cheat with – you’ll NEVER see me put a piece off gluten or dairy in my mouth, but sugar and rice I do tend to “cheat” with. This is the perfect example of why I have to keep a strict diet. Not because of anything other than it makes me feel sick 🙁 But, despite the little bit of pain and the patches, I’m doing really really well. My fatigue has been basically nonexistent and so has my pain.

All in all, I couldn’t be happier with the way things are going!!!!!! Thank you for your continued prayers and your support. It means the world to me 🙂 Especially when I go places and people see me without my crutches. It’s such an awesome feeling. It took me some time to get used to not having my crutch, but I’m definitely back into the swing of life sans crutch.

Wishing You A Painfree Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

10 Ways I Got Ready For My Stem Cell Regenexx Procedure for AVN/ON of my Femur. Avascular Necrosis / Osteonecrosis | It's Just A Bad Day | AVN Knee, Psoriatic Arthritis, Complex Regional Pain Syndrome

Looking for more Regenexx related posts?

Procedure:

Want to know how I found the procedure? There’s a post for that 😉

Did you miss my previous post about my prolotherapy injections? Catch up here!

Want to know more about when I had my blood drawn for my injections? Read this one!

Interested in how the procedure went? Click here!

Want to read about the last day of the whole process and my journey home? This is the post for you!

Monthly Recovery Posts:

Month 1: 5 tips from my post 1 month Regenexx recovery right here 😉

Month 2: In my 2 month follow up, I talk about 3 noticeable differences I’d identified!

Month 3: 3 month follow up and 3 things I’m grateful for.

Month 4: 4 months post Regenexx I’ve been caught saying ‘this is the first time in a long time’ A LOT!

Month 5: 10 NEW things I did 5 months post Regenexx!!

Month 6 & 7: MRI update on how things are regenerating and how I’m doing without my biologic Humira

Month 8 & 9: Spent 3 Christmases on crutches and it feels DAMN GOOD to be crutchless this year!

Month 10 & 11: Back to living a normal life & celebrating things I haven’t done in YEARS!

One Year: One year celebration and update on getting a platelets treatment for a different problem!

One Year + 6 Months: I traveled to the NIH to speak at an FDA hearing regarding regulations and guidelines on stem cells. Watch my testimony!

Two Years: Celebrating 2 years of a mobile and pain-free life!

Categories
Humira Medication Melanoma Methotrexate Surgery Treatments

Autoimmune Disorders And Melanoma

dividerPink

Last summer, as I started getting better little by little, I decided to make check up appointments at all the doctors I hadn’t seen in so long. Having started humira in March I knew that my immune system was suppressed and I was more susceptible to illness. I also have seen so much research that once you’re diagnosed with one autoimmune disorder your chances of having another one increases. Little did I know that decision would be one of the best ones I’ve ever made in my whole life. Autoimmune disorders and melanoma never really crossed my mind. You hear when you start humira, and other similar drugs, that you’re at an increased risk of some cancers, but I never in a million years would have guess I had melanoma.

I had a tan line from the bandaid I kept on it all summer.
I had a tan line from the bandaid I kept on it all summer.

While I was in college my Dad and I started going to see a dermatologist. We both have a lot of moles and he pushed us to get them checked regularly. I hadn’t seen my dermatologist for years and I knew I should go.

During my visit I received another diagnoses that I was shocked to receive. One of the moles on my abdomen was melanoma. Luckily it was melanoma in situ, which means it was in the epidermis, but had not spread to the dermis (lower layer).

I was so devastated.

What else could go wrong?

I had a ‘chronic’ illness with the psoriatic arthritis, parts of my femur bone had died and was crumbling from the inside out and now I was diagnosed with skin cancer?

It was then that I really questioned what was going on in my life? Why? Why me? Why did God think I was strong enough to handle all of these problems?

Because the removal of the melanoma included removing layers of skin off my abdomen I would need to stop taking my humira, methotrexate, asprin and naproxen so that the incision would be able to heal properly.

IMG_6988
Not the most flattering picture of me, but hey- I had spent so many months in bed and I gained some weight. I’m not worried about it. I sang my heart out and enjoyed every minute of it!

I was scared. I started having horrible anxiety. I couldn’t think straight. I went back to having no focus and couldn’t watch a movie or read a book. I had huge breakdown and cried for days. My amazing parents decided I needed a change of pace and a mental reprieve. At the beginning of August they took me to Florida to stay at the beach for a week and surprised me by taking me to the Happiest Place On Earth – DISNEY – 2 of the days we were there. One of the days we were in Disney, I was chosen to perform in one of the American Idol Experience shows. I ended up taking first place in the show by singing Martina McBride’s Independence Day. Since I won the show I was put into the final show of the night which would yield the winner of the day. I ended up coming in 3rd out of 5, but I can’t even tell you how amazing of an experience it was.

It was during this time away that I realized that I still had confidence in myself. I feel like up to that point I was acting like the victim of my diagnosis’s and it wasn’t helping my mental health. Just  because I was on crutches, and all these medications, didn’t mean I couldn’t enjoy my life. I really had an ‘aha’ moment and knew I had to change my thought process to get myself better.

IMG_6989Once I came back I signed up for an online series to help you write your own personal prescription. This prescription would help your body get to a state where it can heal it’s self. I went into my melanoma procedure in a very relaxed, non-stressed, positive mental state. If I would have had the procedure before vacation I think I would have had a horrible experience. Because I waited until after my ‘aha’ moment the procedure came and went with out a second thought. My incision included two levels of stitches, because of the placement on my abdomen. I would come back in one week to get one level of stitches out and the following week I would get the second level of stitches out.

Everything went well and, after sending it off for tests, it was confirmed that the entire site was removed. I was so lucky to not have to do anything other than get the melanoma site removed. During my follow up to get half of my stitches out my dermatologist ended up removing 3 other sites that looked irregular. She said because one site had ended up testing positive for melanoma she was going to test anything she thought looked suspicious. That was fine by me! I’d much rather be safe than sorry.

I had to stop my meds 10 days prior to the procedure and wasn’t allowed to start them until after my stitches were out and my incision was in a good place where it was healing well. During this time I assumed I’d be in a lot of pain. As the days went on, I started moving slower and slower. My body started getting tired more easily and there were days I just felt completely exhausted. You know the feeling when you have the flu that your body weighs 10000 pounds and you just don’t have the energy to move – that’s the way I felt 85% of the time. My joints started to become stiffer and it would take me longer to get up in the morning. The wonderful thing was that my knee hadn’t blown up and I wasn’t in excruciating pain! In fact, my knee pain was a little bit worse, but not by much! It was during that time that I started working with acupuncture and I was hoping that was helping keep my pain and swelling under control.

IMG_6996The 3 other sites which were biopsied came back negative and we agreed to keep an eye on them. I never thought I’d be so excited to be cleared to start on a medication that made me so sick (aka methotrexate). My incision healed just nicely and every month the redness of the scar is going down.

I still cannot believe that I randomly made that appointment and the outcome was melanoma. When I was little my Dad and I would have contests every summer to see who could get darker. There was even one time at the beach that I was mistaken for being a different ethnicity. When my Dad had a melanoma scare he stopped being a sun worshiper. He became such a stickler for sunscreen and it wasn’t even fun being outside with him. (sorry Dad…) I’m not like him yet, but I definitely realize that I probably caused this site to become cancerous. I still love laying out in the sun, going to the beach, and being tan, but I am much more conscious about it now.

about-spot-skin-cancer-bannerIf you haven’t been to the dermatologist, and you have moles or any of the risk factors listed here, please let this be a push for you to make an appointment. ESPECIALLY if you’re on immune suppressing drugs. Cancer is never something to mess around with. Had I not gone to that appointment when I did, who knows what could have happened. Thankfully I’ll never need to find out. Thank you God for pushing me to make that appointment.

Wishing You A Pain Free Day!

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Humira Medication Methotrexate PsA Treatments Uncategorized

Medications – Humira for Psoriatic Arthritis

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At the beginning of 2013 I would get blood work done monthly and report back to my rheumatologist. I was doing well, but we had decided that we were going to attack my psoriatic arthritis aggressively. My knee swelling definitely had gone down, but it still wasn’t anyway close to normal … aaaaaannnndddd I was still in pretty good pain. My rheumatologist pushed my insurance and was able to get them to approve Humira injections a few months earlier than they usually would have. I started the methotrexate in January and humira at the end of March.

YIPPIE! I GET TO START INJECTING MYSELF! I’ve always wanted to…

This wasn’t a very exciting thing for me to start. I always joked about how I would never do drugs because I could never stand injecting myself with something. Now I found myself faced with having to give myself bi-weekly self-injections. I knew I could do it though. If this was going to make me feel better I could suck it up and stab myself!

IMG_7005Not knowing what to expect made the first one a bit nerve wracking. I grabbed what I thought to be the humira pen, took the cap off and began counting down. It took me a good 5 false starts before I pulled the trigger. It was painless. I didn’t feel a thing! I was so excited and happy and then mad at myself for building it up in my head…. Then I looked down at my leg and noticed there wasn’t even a mark from the injection. It was then that I closely examined the humira pen and realized I HAD GRABBED THE PRACTICE ONE! Ahhhhhhh. Well, my Mom, Dad and I had a good laugh and then pulled the REAL humira pen out of the fridge. After waiting the half hour for the pen to warm up, it only too me 2 count downs to pull the trigger.

OWWWWWIIIEE!

Man, I definitely underestimated the burning sensation the injection was going to have. The great thing about it was that it only lasted about 15-20 second. 15-20 seconds of pain bi-weekly vs. constant join pain? I could deal with it.

As the weeks have gone by and I’ve done more and more of them the burning honestly doesn’t bother me as much. The key is to make sure you set out the pen for a half hour before you inject it. Let it warm up!! Don’t do it cold… just don’t.

They say not to inject yourself in the same spot every time. I rotate locations. One week I do the left leg, next the right leg and the third time is in the stomach. Then I start all over again! I put a reminder in my calendar so that I keep track easily. Once you’re signed up and start your medication, make sure to go and sign up for the myHUMIRA program. One thing that makes it so much easier is that this website offers a service that texts your phone on the day you’re supposed to take your meds. It’s awesome when I get a text and it reminds me to take my injection! They also offer travel kits for your humira pens, syringe disposal containers, 24/7 nurse lines and more. It’s definitely worth setting up an online account.

 

hero-hpp-cardThe most important thing you can sign up for is the humira assistance program. It will take your copays from $120 a month to $5! Here is an application that you and your physician can fill out to apply for the card. My rheumatologist signed me up for the assistance program before I even left her office. Make sure to ask about. The program also covers other medications as well – like methotrexate- so when you sign up make sure to ask about any other medications that you’re on!

humira-pen-figure-a-pen-imageI receive my humira through Acredo Express Scripts. It’s convenient because they deliver the pens right to my door. Depending on your insurance you’ll probably have to go with a different speciality pharmacy. I always make sure to ask for a package of alcohol wipes! And as a bonus the pens come in little styrofoam coolers that are the perfect size to fill with jello shots… you know… to take to tailgates… hey! when you’re getting injections in the mail you have to dream about more fun things ok!

Knock on wood- to date I haven’t had any side effects from the medication. Lately I have noticed that the first week I feel great. As the second week goes on my knee starts to hurt more and my hands really start to ache. By the weekend before my next shot my hands always take a few hours to warm up before they’re ready for the day. I plan on definitely bringing this up with my rheumatologist at my next appointment in a few weeks. We shall see if anything changes.

I do not feel that the medication helps with any fatigue symptoms. Really doesn’t. I’ve been working with my diet to try to relieve some of these symptoms… I’m working on it… still waiting for it to go away. The bad thing is that I feel when you bring up these symptoms to doctors they seem to brush it off. They say things like ‘oh you need to be more active’ or ‘oh you need to do this or that’. Easier said than done… I’m on crutches! It’s not like I can go take a walk around the block to get my energy levels ups. But anyways, that’s a whole other post 😉

Humira has been a good addition to my medication regiment. I would recommend this medication to others who have been diagnosed with psoriatic arthritis. Please let me know if you have any questions on anything on this medication! I’ll tell ya straight up what I think.

 

UPDATES:

In February 2015, I had to go off of my Humira for a stem cell procedure. Here’s how I dealt with it!

Since February 2015, I’ve been completely off of Humira. Here’s an update on how I’ve been doing.

 

Wishing You A Pain Free Day!

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Categories
It's Just A Bad Day Medication Methotrexate PsA Symptoms Treatments

Medications – Methotrexate For Psoriatic Arthritis

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Methotrexate-Pill

Once I received the official diagnosis of psoriatic arthritis, my rheumatologist started me on Methotrexate. December 2012 to March 2013 are pretty much all a blur to me. I know that she explained to my parents and I the dangers of the medication, but I didn’t really fully comprehend what the medicine was. My parents did and helped me make the decision to start on it, but I think I was just so out of it I wanted ANYTHING that would help.

I took 7 2.5 mg pills, once a week (every Saturday) until July. Since I was so out of it I didn’t really recognize all of the side effects I was having from this medication. I laid in bed most of the time so I never realized that the days after I took it I felt like sh*t. Once I started becoming more mobile I would go out and see my friends on the weekends. I just assumed I over did it and paid for it Sunday-Tuesday. At one point I did realize that I was loosing mass quantities of hair. Like enough hair to make wigs from. Thank goodness I was blessed with a ton of it so I wasn’t so freaked out, but still! You run your fingers through your hair and huge clumps come out… that’s scary. When I told my rheumatologist this she suggested I try only 5 pills. That only lasted for a month or so and I went back up to 7 because I needed it. I got myself a high-powered hair, skin & nails supplement and added it to my pill-box. Since I did that hair loss wasn’t an issue.

In the summer I was diagnosed with having a melanoma in situ site on my stomach. I had to get the site and all the skin around it removed to prevent skin cancer from spreading. Luckily it was only in the first layer of skin and I caught it early. It was by complete luck that I even went to the appointment so I thank my lucky stars for whoever made me make the appointment. Anyways, since I was on humira and MTX, methotrexate, (which both suppress your immune system) I needed to stop them so that I could have the procedure done. I needed to stop 2 weeks prior to the procedure and then once the wound was fully healed I could start back on them. I was afraid that I would be in severe pain or have bad swelling during this time, but in fact I was pretty good! Looking back, that was probably the best I’ve felt. (hmmm maybe I should bring that up in my next appointment)

Once September hit I was ready to start back on MTX. Yippie! By that point I was in a MUCH BETTER state of mind. I understood fully what was going on and was 100% capable of making my own decisions. Saturday would come around and I would take my 7 2.5 mg pills and I started to notice how horrible I’d feel the next day. And then sometimes the following day. Horrible to the point where I couldn’t open my eyes, had a splitting headache, was so nauseous and dizzy. Think worst hang over you’ve ever had. I wouldn’t even have the energy to hobble up the steps to eat dinner… or sometimes even eat, for that matter!

MTXhangover

Were other people having this same reaction? What was going on?? It was at that point that I realized that MTX was a chemo drug. NOW it made sense why I had been loosing my hair! NOW it made sense why I had been feeling so lousy! I started having to schedule things about my recovery days. How could a medicine that made me SO sick be helping my body? I just didn’t get it at all.


I went on taking it until mid October and finally said I had enough. I talked to my rheumatologist and explained HOW sick it was making me. I was incapacitated for days. She suggested that we stop the medication and see how I fared.

Since then I’ve had really bad problems with fatigue. It’s like I traded the scheduled sick days for the ‘I’m not sure how I’m going to wake up and feel’ or ‘I can only do one activity because it wears me out’ days. Which ones better? It’s so hard to say for sure. I know that I’d rather try to fight the fatigue through my diet and lifestyle then add back chemo to my medication regiment. I have an appointment with my rheum in a few weeks and I’m anxious to see what she says about my medication. Not sure I’d go back on MTX… I would if I HAD to, but if I had a choice I would not take it. I don’t miss those #MTXHangovers.

If you have ANY questions at all about the medication ask me! I can tell you how my experience was and what my opinions are.

Want to learn more about my Humira experiences? Click here.

Wishing You A Pain Free Day!

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