figuring out the right Rx for you

It has been awhile again, mostly because WE BOUGHT A HOUSE!!! But also because I am still trying to figure out the right prescription for my symptoms.

Back to the house…it’s a dream come true! We just love our neighborhood, we’ve already made friends with some neighbors, and we are excited for all the potential it has for remodeling. The past month has been packed with moving, unpacking, painting and doing heavy maintenance on the house. My body has been exhausted and sore in ways that I’ve never experienced, but it’s worth it.

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The other battle I’ve been fighting at the same time as all of this change is my medication. I decided that Orencia was not going to work for me. It never “kicked in” like I was hoping for, and after 7 months, I should have noticed some improvement in my pain levels.

All I can say is don’t give up. There are so many biologic medications to choose from, that one of them is bound to work. So my next attempt is Remicade, which is related to the Enbrel and Cimzia family. The good ting about Remicade is that it has the flexibility in frequency of infusions and dosage amount. So my doctor is able to change my injection dates if necessary, or my dosage if necessary, until they find the right balance for me.

Only bad thing about Remicade is that it can cause allergic reactions much easier and your body can reject it at any point. So I take Claritin or Benedryl with the infusion each month and just make sure my antibodies don’t grow against it. Otherwise, we will see how it goes! I can already tell that the infusion is helping faster than Orencia ever did. Fingers crossed!

I’d love to hear about your experiences with Remicade. Find me on Facebook and comment!

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the walk to cure arthritis – denver

Help me raise funds to support the Arthritis Foundation and find a cure for arthritis!

I joined the Walk to Cure Arthritis because I am one of the more than 50 million people who live with arthritis. I was diagnosed 4 years ago with Rheumatoid Arthritis and have been struggling with Psoriasis since I was a child. I am ready to help find a cure for these debilitating auto-immune diseases, to help the millions of people and over 300,000 children who are in pain on a daily basis.

Join me at the walk on May 18th in Denver, or donate to the Arthritis Foundation today!

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Your donation today will help fund arthritis research, education and community programs and get us closer to a cure for the millions who suffer from this debilitating disease. Thank you for your kindness and support!

See more at my personal donation page! Or join my team to walk with hundreds of people affected by arthritis on May 18th.

 

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giving back

I recently found a way to give back to a good cause by doing what I love. The Arthritis Foundation was looking for volunteer committee members and I thought this was the perfect fit since it is close to my heart and my everyday life.

When I went to the first committee meeting for the Denver Arthritis Foundation Walk to Cure Arthritis, they needed a designer and social media expert to volunteer time to the cause. So I have been giving my time the past couple of months to fundraising, spreading awareness and updating social media for the Walk to Cure Arthritis 2014 in Denver.

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The Walk to Cure Arthritis raises funds and awareness to fight the nation’s leading cause of disability. We aren’t just helping the millions of people who live with arthritis pain, we’re funding research that’s getting us closer to a cure. This year, the focus is on the CURE for arthritis, since many people don’t understand that arthritis, rheumatoid arthritis and juvenile arthritis are chronic diseases and are very difficult to live with.

The Denver Walk to Cure Arthritis is at Washington Park on May 18th this year and features a three-mile and one-mile course. Pet owners are encouraged to bring their dogs to enjoy the pet area, sponsored by Toyota. And there will be a children’s area sponsored by the Colorado Rapids.

Let’s walk together, support each other and raise funds to find a cure for arthritis! Register Today

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just ask

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I know it has been awhile since I’ve posted, but I’m back! And 2014 is a new year!

A little recap of the last 6 months: I moved to Denver in May; I picked up a cooking hobby over the summer and I hope to work on my very own cookbook in 2014; my boyfriend was in the hospital for a week from an a-typical pneumonia (poor guy); I was scuba certified in September, so it’s about time to plan that exotic getaway with my man in 2014; I had foot surgery on both feet to remove some rheumatoid nodules in October; I had to get pre-melanoma cells removed on my back in November; and then the very busy, but amazing, holidays! It has been quite a 2013, and I am looking forward to a fresh start.

Speaking of a fresh start…I changed biologics in September to treat the Rheumatoid Arthritis. I was taking Cimzia, which was a self-injection biologic similar to Enbrel, but it wasn’t quite hitting the spot. I was still swelling and having to take Aleve like it was candy. So my new Rheumatologist, Dr. Zachariah at the Colorado Arthritis Center, wanted me to try Orencia. This is a different type of biologic that works early in the rheumatoid arthritis inflammatory process at the T-cell level, reducing the activity of the T cells, which reduces the activation of other cells in the rheumatoid arthritis inflammatory process. I also take this biologic as infusion once a month, so a lot less hassle.

Only downside is that it could take up to 6 months to “kick-in”. I started Orencia in September and after 4 months of infusions it is just starting to work for the pain and inflammation. In the meantime, my doctor prescribed me anti-inflammatories and some pain medication for overnight when I just couldn’t handle it. I’ve noticed that I don’t need as many anti-inflammatories (Diclofenac) after the last infusion on the 2nd, but I am still swelling, just not as much pain. So the doctor has also prescribed me Hydroxychloroquine, originally an anti-malarial medication that also treats auto-immune diseases such as lupus and RA.

And here’s where I get to the “just ask” part…I went to Walgreens and asked for the inactive ingredients for the Hydroxychloroquine tablets. NOTE FOR GLUTEN-FREE READERS: This is something I always do at a pharmacy. You can ask for the pamphlet that came with the bottle and search at the top of the page for the ingredients and inactive ingredients breakdown to check for gluten! Unfortunately, the tablets they stocked included pre-gelatinized starch, but this is vague. Starch can come from any source, some gluten-free, some not. So I asked the Walgreens Compounding department about creating a gluten-free version, but they were not able to order the active/main ingredient for me. So my last resort was to call the Manufacturer.

I sent an email and also left a voice message for the US Ranbaxy Pharmaceuticals location. I had Walgreens send me the NDC#, name and dosage so I could ask exactly what the pre-gelatinized starch source was. Within 24 hours, they called me back. Can you believe that?! Good news is that the source of the starch is corn so I can take the generic Hydroxychloroquine, as long as it is from Ranbaxy as the manufacturer.

So don’t forget, if you’re worried about the gluten in a medication, just ask your pharmacist and ask the manufacturer. They can actually be very helpful!

my gluten-free hobby

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Some of us with an auto-immune disease have to follow very specific diets because our immune system has weakened our digestive system. But living a gluten-free and wheat-free lifestyle hasn’t been all that bad the past 6 years.

According to the National Foundation for Celiac Awareness, gluten-free diets are common with most auto-immune diseases, thyroid diseases and even autism. “The gluten-free diet is the fastest-growing nutritional movement in America,” and in the past few years, it has become a huge trend. This makes it a lot easier to find foods and baking flours that are gluten-free on the shelf of most grocery stores.

The newer Paleo diet has also shown many improvements for those with autoimmune diseases. “Adhering to man’s natural diet has the potential to restore many necessary functions of the body and, by report, halt autoimmune disease symptoms in many.”

Lately, I have taken on the hobby of finding various paleo and gluten-free recipes (mostly on Pinterest) and trying them out. Because of my restricted diet, I usually cook for myself at home and it could be easy just making simple salads all the time. Instead, I have made cooking one of my favorite hobbies of the day! My boyfriend usually can’t even tell the difference.

Check out some of my favorite recipes: “Scrumptious Foods” Pinterest Board Enjoy!

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Gluten-free at Disney

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We went to Disney World Magic Kingdom for the last time before our move out of Florida and to my “magical” surprise, I was able to eat gluten-free at this happiest place on earth.

At Pinnochio’s Saus near to Cinderella’s Castle, they even make Amy’s gluten-free pizza or have Udi’s gluten-free crust available. All you have to do is say you have food allergies and you will be provided special attention by a manager. It takes a few minutes longer to make, but it is worth the wait!

Here is a link to more gluten-free spots at Disney for your next visit.

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Another tip for going to Disney theme parks with rheumatoid arthritis or another chronic pain condition is that they provide disability passes and wheelchairs for free. I simply went to the Guest Services office after the main entrance and explained my condition. They were very sympathetic about the long waits and provided wheelchair option and a ticket to pass most lines. This allowed me to do more sitting instead of standing in the long lines, and I lasted a whole 12 hours at the “most magical place on earth.” Thanks Disney!

chronic frustration

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It can be so frustrating when you feel pain, but all the tests keep showing up “normal.” What the heck does normal mean, anyway?

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I’ve been having abdominal pain since January, and I just thought it was stress…then I thought it was gas…then I realized it had been a month and having pain that long means it’s time for a doctor. A lot of people who have chronic pain tend to brush off new chronic pain until it just becomes unbearable.

And not only is the pain frustrating, but the process trying to figure it out can be as well. Doctors can only guess at what is causing you pain, so they send you off to radiologists and labs to take blood samples, ultrasounds and scans. The good news in my case is that these tests ruled out major issues, like ovarian cysts, kidney infections or gallstones. But after all of these tests (and all the money spent), I still don’t know what is causing this pain.

After ruling out all of my main organs, the only thing we can think of is my intestinal tract. So the next step will be to pinpoint what might be happening in relation to food or digestion.

All I have left to say (after venting in this post) is that I understand how frustrating the search can be. I went through it once when we were diagnosing the rheumatoid arthritis, but it’s an ongoing battle. And I’d love to hear from my readers about their journey as well.

new years resolution for arthritis

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Studies show that regular aerobic and strength training exercise may help reduce joint pain and stiffness, increase joint mobility and muscle strength and improve psychological well-being. Do you have a New Year’s resolution even living with RA?

It is important to keep your exercise program well-rounded. According to the Arthritis Foundation, it should include aerobic exercise to strengthen your heart and lungs, strengthening exercises to make your muscles stronger so they can better support your joints, and stretching exercises to keep your muscles flexible and joints moving freely.

Indoor cycling or Spinning® is a great way to exercise with rheumatoid arthritis. The 45-minute program targets thigh and hip regions, strengthening the muscles and joints and in effect, easing the pressure on the joints. I have been spinning for the past year and it has significantly increased the strength of my leg muscles, which eases my joint pain overall.

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Another good type of exercise is yoga. Some of the poses may be hard on your wrists, like they are for me, but there are variations that can help. Yoga is a good strengthening and stretching type of exercise to keep flexibility in your joints and muscles.

During exercise with rheumatoid arthritis, it is very important to pay attention to your body. If a particular joint is actively inflamed or in a flare, give that joint a rest, but continue to exercise. And while it’s natural to experience some muscle soreness following a workout, increased joint pain may mean you’re working too hard and need to scale back your exercise routine.

“Adjust your workout to accommodate your body,” Dr. Siegrist says. “If you take a spinning class and it hurts when standing on the pedals, sit – but keep pedaling. By modifying your activities, you can do the things you want to do.”

What will your New Year’s resolution be?

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