Ch-ch-ch-ch-changes!!

FYI - This is a long one…

Those of you who have been following this blog for a while may know that “No news, is good news!” When I’m feeling good – I forget to blog, and that is just what has been happening!

The past month or so hasn’t just been good though, it has been great!

As I mentioned in my last update, the beginning of the year brought some small “bursts” of energy here and there, and some signs of strength that surprised me. Then, February 1^st arrived and BAM! It was like overnight my energy level and strength quadrupled! It was crazy! All of the sudden I was able to move! Incredible!

I even started working out lightly. That on top of my new clean eating plan from Fit Girls Guide has helped me to lose 14 pounds since the first of the year and I’m not stopping even when I reach my weight goal; I have completely fallen in love with taking care of myself.

I really hit bottom this past year and I don’t want to go back to that place. If there is any way that I can avoid a flare, I’m going to do it (or not do it for that matter). It’s just not worth it.

Do I love sweets and booze? You’re damn right I do – but I have learned that too much sugar or booze will cause the fibro to flare. Same goes with too much or too little activity and also stress.

Today, I am in a little bit of a small flare that started up late last week. I think that I may have pushed it too hard physically, and then didn’t give myself enough care over the weekend to come out of it quickly. It’s always a learning process.

I am just so thankful to be coming back. As I mentioned, the past year was a low point in my life. It tested my inner strength, my faith, and my joy. 

Before Brad and I decided to go ahead and try the Rituxan infusion despite my fears about the procedure, I told him that I just didn’t know how much more I could take. I didn’t know how to live my life feeling so miserable and alone. 

Today, I do have pain, but I have been reassured that it is only temporary, and I have been reminded of my own strength. I know that I can fight through it. 

Do little pings here and there make me a little nervous – yes! But, I now have some new tools in my belt that help to give me added confidence, and inner strength once again.

Even more great news are my recent lab results!

3/3/16 Labs 

The blood sugar remains positive but just at the upper limit of normal. Was 111 last check, 105 before that, now 103.  

The remaining labs for the liver, kidney, and blood cell counts are normal except a small drop in the white cell count, this could drop a little more with the increase in the azathioprine. No inflammation detected.  

The muscle enzymes are all NORMAL!!!

Will see how you do over the next few months, you have a follow up in May. Will place orders for rituxan at that time. 

Ok to continue the methotrexate and try an increase in the azathioprine.

Yaaaaaayyyyy!!!!!

So, this brings me to the next point of business: drugs!

Last week Dr. Grandits and I talked about whether or not we should plan for another Rituxan infusion in June (at the 6 month mark) or if we should wait to see if the effects taper off or not first. She explained that in some instances, 2-3 sets of Rituxan rounds can potentially push Dermatomyositis (DM) into remission, to which I responded, “Sign me up!”

She and I will meet again at the end of May to check in and do labs, then schedule my next infusion for June.

Although here is the “fun” part…
Prior to my first infusion, in November 2015, both the Infusion Center AND my husband called my insurance to get pre-approval for the infusion. Blue Cross said to both, “You’re good to go.” 

Now, I find out that they came back to my Rheumatologist and denied the infusion, and even after Dr. Grandits appealed twice, including a very impressive appeal letter citing DM research and cost benefits, etc. and billed my doctor $33,000 for my infusion. WHAT?!?!
So, her clinic was kind enough to write that cost off to the hospital, and has appealed a third time in preparation for my next infusion, but Brad and I are appealing on our end as well, since they told us that the procedure was covered before I received it. Ugh. What a mess.

I know now that we will get it all figured out before June, but I was panicking for a solid week (which very well could have encouraged the small flare that I’m currently experiencing). Here I have finally found a drug that can give me my life back and my insurance wants to charge me the cost of 4 years of college to get one set of rounds? And I could potentially need two sets of rounds a year? Guess what - I’m still paying for college! 

It’s terribly sad that people in this world cannot receive medications that could potentially save their lives just because insurance companies are assholes. Why is this medication $33,000 in the first place?
Okay, deep breaths Maren. <steps off soap box>

Anyway.

More on drugs.

While my internal symptoms have been improving daily, my external symptoms are not. My DM rashes (on face, shoulders, neck and chest) and Gottron’s Papules (on hands) have been horrible, painful, and completely obnoxious. I met with my Dermatologist a few weeks ago to get some new topical medications to try and also get her thoughts on my progress. She recommended adding Plaquenil back into my medication rotation to help with the DM skin symptoms. 

After then discussing this with Dr. Grandits, we decided to first try an increase of my Azathioprine. If after increasing to up to 4 tablets a day, I am not seeing improvements, we will try Plaquenil [again*].

I continue to apply Triamcinolone and Sulfacetamide to the rashes as needed. I found a great local compounding pharmacy that has been able to help get me those medications without ingredients that I am highly allergic to, including propylene glycol and lanolin.

* I have taken Plaquenil before and it didn’t appear to do much for my “internal” symptoms, however I also wasn’t having a skin flare up as bad as I am now at the time, either. 

Plaquenil tends to be helpful for DM patients with more serious skin symptoms and people with other auto-immune skin conditions, such as Lupus. It also helps to reduce photo sensitivity, which has been a problem for me as well.

In regard to research and comparison, it isn’t the best idea to implement numerous variables at the same time, since it makes it nearly impossible to know which was effective (see, there’s that college education that I’m still paying for). However, desperate times call for desperate measures, and this past winter was said “desperate time”. I began taking Azathioprine and received two rounds of Rituxan around the same time. I also began taking two new supplements:

Omega 3 by doTERRA

• Essential Fatty Acids (EFAs) are nutrients required for many key functions in the human body including cell growth, brain development, muscle activity, immune function, joint health, and many others. 

While I am not supposed to be taking any supplements to encourage immune function, the main reason for the Omega 3 is in response to a few articles that I read regarding the healing of damaged muscle tissue and EFAs. I know that I have damaged muscle tissue in my body from my flares, so I am hoping that taking an EFA supplement might help to rebuild healthy muscle tissue, if possible.

Alpha CRS - CellularRenewal System by doTERRA

• Supports healthy cell function by reducing oxidative stress to DNA and other critical cell structures and a healthy response to oxidative stress in cells. 
• Supports cellular energy by engouraging healthy mitochondria and by supplying metabolic factors of energy production along with healthy cellular immune function. 
• Also supports mental clarity and brain function.

Because, why not?! All of the above sound good to me! I was previously taking a whole nutrition supplement, and have simply swapped out for this new version.

After reading about the next supplement in my Myositis support groups, and then discussing with Dr. Grandits, I will soon implement the following as well:

CoQ10

• CoQ10 performs two vital functions: It is a coenzyme that helps energize cells and an antioxidant that helps protect cells.
• CoQ10’s energizing antioxidant properties may enhance vitality across many body systems, supporting brain health, immune performance, skin health, exercise capacity, gum health and more. 
• Of all its benefits, CoQ10 is most famous for supporting heart health.

From what I have read, CoQ10 helps with energy and also giving health to muscle cells (I’m guessing from increased blood flow, or whatever it is that is also helping the heart). Those who take this supplement in my support groups report feeling less exhausted.

Add it to the Pill Tray! 

This last little update is breaking news in Maren-land, I just found out about this last night and had already drafted the rest of this update. I contemplated waiting to share until I knew more, but since this post is already reaching novel-lengths, why not tack it on!

I have been having shooting pains in my thighs and also deep pain in my hips. This has been going on for a few years, but has been getting worse lately. The thigh pain occurs about mid-femur and feels like a sharp pain in a few different spots on both legs. I had assumed that the hip pain was my Fibromyalgia flaring up, but once I mentioned the shooting pain in my thighs, it raised a red flag for my Rheumatologist. 

Dr. Grandits is concerned about Avascular Necrosis, which can occur sometimes with prolonged Prednisone use and spontaneously in Lupus patients (of which I have always had similar symptoms, yet test do not show official overlap).

It is where the femur bone loses it’s blood supply and bone death occurs, which can be a painful process. I’m heading in for an MRI to confirm since it can be a serious problem if it is in the early stages.

So, I am a little worried about that, but trying to remain calm. I know that I have said it before, but the unknown is always the scariest. Hopefully I can get in for the scans soon, to help ease my mind a little. The frequent shooting pain is sort of hard to ignore, and now that I know it could be more serious, I’m trying not to freak out.

Thankfully, I have my trusty ol’ stationary recumbent bike to use to keep up some light activity and help reduce stress on the legs until I learn more. Hopefully my pups aren’t too mad about holding off on some walks for a week or so, since it’s supposed to get cold again, anyway! I’ll post an update as soon as I learn more.

Until then, you’ll find me plugging away on my Fit Girls Guide plan and working on gradually increasing my activity. It’s still hard for me to do more than one official “thing” per day, but I’m working on it! 

I have been loving just waking up and feeling alive again. It’s such an incredible feeling.
I have vowed to never take my health for granted ever again. Feeling well is such a gift.

Love to you all. As always, thank you for your support!

XO, M