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

The Waiting Game

Here I sit, 4 weeks out from my last Rituxan infusion and each day is a little different than the one before.

Last week, I had daily “Feats of Strength” occurrences. For example, I was suddenly able to lift a small grocery bag onto the counter from a fully extended arm. This is something that I haven’t been able to do in about a year. This was so exciting! These Feats of Strength though, were followed by the overwhelming need to lay down and take a nap. Very strange, but I’ll take it!

2nd Rituxan Infusion in the books!
And yes, I did just wake up here!

This week, I’m back to feeling pretty wiped out and my upper arm and thigh muscles have that exhausted “dermatomyositis” feeling again, making it hard to get things accomplished. I have been however, getting bursts of “run around and get things done around the house” moments, which is very much the “old me”. I’ll take that, too!

I met with my rheumatologist, Dr. Grandits last week for a check-up. She said that while many Rituxan infusion patients will begin to feel improvements within the first 2-8 weeks, as the infusion center explained, that it isn’t uncommon for infusion recipients to continue to make improvements for up to 5 months! We talked about the changes that I noticed being signs that something is happening, that it sounds like it’s in the right direction and that the next 6 months may be filled with lots of little improvements that add up to me hopefully starting to feel a lot better. I told her that any “little” improvement is huge progress to me, so not to worry about me being disappointed. My spirits are very high and I’m feeling very optimistic.

Dr. Grandits also told me, by her very precise “push-on-the-hands, squeeze-the-fingers, sit-up-in-the-chair” strength test that she can tell that I’m getting stronger! Huzzah!

As for labs… they don’t always tell us too much, except for when they say that something is really wrong. This round of labs were pretty great though, especially since I have had some major drug changes in my system:

1/7/16 Labs 

Labs look good, no toxicity from taking the medications. Normal liver, kidney, and blood cell counts.
The muscle enzymes show a normal CK, normal aldolase, the LDH is up slightly. The blood sugar is also up slightly, this should drop with the drop in weight.
The sedimentation rate and c-reactive protein are normal.

This brings me to the other conversation that I had with Dr. Grandits, my weight. Wah-waaah.
As I had mentioned in previous posts (I think), I gained a LOT of weight when I was on Prednisone. While this isn’t uncommon, it doesn’t change the fact that it isn’t good. My blood sugar also went up with my weight, and now both my blood sugar and BMI are in unhealthy ranges.

If not having any pants that fit isn’t motivation enough to get in shape, putting yourself at risk for diabetes sure as hell better be.
I found a really great e-book and Instagram-based program focused on realistic, clean eating and exercise that I started on January 4^th called the Fit Girls Guide. I’ve really been enjoying it! Even though I’m still not strong enough to do a lot of the exercises, the program has a “just do the best that YOU can” motto that I love, and the other gals are incredibly supportive, too.

As Dr. Grandits mentioned, my blood sugar will likely come down with my weight, which is great. I’m already excited for my next check-up for labs in March. I’m also really excited about wearing pants again… since leggings and sweats don’t always fly in public, and I can only wear my “Hey, I just came from the gym” look so often without people starting to wonder if I work out so much, why I don’t look like a contestant from the next American Ninja Warrior.

I should mention that I am trying to be kind to myself about the weight thing, but I do think that it will be easier for me to get stronger be active with a little less weight to tote around. It's hard enough to be active as is with dermatomyositis, and the extra 30+ pounds doesn't help! 

So, that is about it for now! I hope that 2016 is off to a great start for you all, and as always, thank you so much for your love and support! 

XOXO, M

Round Two - DING!

It’s been two weeks since my last infusion, and tomorrow I will receive my second round. 

Everything went well the first time. I didn’t die, so that’s a plus, I did wake up about every hour that night just to be sure I was still here.

The infusion lasted exactly 5 hours. I was hopped up on Benadryl and Prednisone, so I could hardly keep my eyes open yet couldn’t fall asleep. I was home and in bed that afternoon and slept for 2 days! Other than being sleepy, I haven’t really felt any better or worse in the past couple of weeks (with the myositis – i.e. weakness, exhaustion), which is just fine. After my second infusion tomorrow I will start to anxiously await feeling any improvement. 

Since the infusion though, I think that my fibro has been flared, which is annoying. I haven’t really had to deal with any fibro stuff since the myositis flare started. I am super forgetful and have pain in my joints from it – I’m scatter-brained and am having a really hard time putting this post together, which is unlike me. I have a feeling that I brought it on myself by over indulging in some foods that have been known to trigger inflammation (i.e. sugar, cheese, tomatoes).
Once I get rolling out of the current myositis flare, I am really going to dive into working on incorporating some of the autoimmune protocol into my diet (more on this later)… if you can’t wait until “later” click here.

Tomorrow the infusion will only be 4 hours, so I’ll be home and in bed by lunchtime. I’m really hoping that tomorrow is the day where this all starts to turn around.

I can’t thank you enough for supporting me through this. Hopefully this will soon be just a memory. Even though I can’t remember what I am supposed to be doing from moment to moment, I have truly appreciated the prayers, FB notes, calls, texts, emails and surprises (both me and my pups have received some really sweet treats from secret admirers that were a very unexpected surprise that we all loved)! 

Once my head is screwed back on straight, I promise that I will return messages and get my sh#t back together to properly thank you all.

Wish me luck tomorrow – I hope that this round goes just as well as the first.

XO, M

November Update

Hello!

It’s almost December and I have to be honest, I’m ready for a New Year. I certainly don’t want to wish away the next month, but I am definitely ready to start feeling better. The past 7-8 months have been a struggle that I am ready to move past.

On Tuesday, I’ll be heading in for a Rituxan infusion, my first of two rounds. This drug is an IV administered infusion with the potential to kick my flare into a remissive state. I will receive two rounds that will last 6 months. The hope is that this drug will give my flare a kick in the ass, and by the time it wears off, my other two immune-suppressing drugs (Methotrexate and Azathioprine) will be fully on board.

My last labs were mostly clear, so it’s likely that my other drugs are starting to work, but after talking about it with my Rheumatologist and my husband, we decided to go ahead with the Rituxan infusion and not wait any longer for the flare to calm down with the other drugs alone. I have quite a few friends in my myositis support groups who have had great success with Rituxan, so I’m hoping that it may be able to help me, too.

11/19/15 Labs
The labs look good. No liver, kidney, or blood cell count abnormalities. The muscle enzymes are normal. The inflammation marker, c-reactive protein, is normal, has been elevated since September. The sedimentation rate remains normal. The blood sugar is mildly elevated.

Since my initial diagnosis in the summer of 2010, I have always felt that I could deal with anything, provided I had all the information that I needed to understand. It’s the unknown that is always the scariest. I have to admit that I am scared. While the worst of the potential side effects of Rituxan are generally reserved for those who have much more serious conditions, such as lymphoma, or are on much greater doses than I, reading “death within 24 hours” is not something I’m used to encountering when I research my medication information. I definitely wondered whether I should check my pants after reading that.

The past months have included some of my darkest moments, where I truly wondered if I could handle any more of this disease. I have felt weak, isolated, and at times like a stranger to even myself. I am ready to move on, and so I am trying to be brave. If this infusion can help me, I know that I need that help now.

Brad will be joining me for the 5 hour infusion and my coworkers have been kind enough to cover my shifts so that I can also have a few days to recover, as it’s not uncommon to have flu-like symptoms for a few days afterwards. I’ve got a new pair of jammies, a season of one of my favorite shows to watch and my pups, who are always the best little nurses a gal could ask for.

I’ll be sure to update when I’m able. I will then have the 2^nd round two weeks from the first. Same scenario, although I may need another season of my show by then!

As always, thank you for your love and support. Sending warm wishes to you and yours. The cool weather and fresh snow outside my window brings a smile to my face and I hope that the same rings true for you!

XO, M