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

Ode to Prednisone: The A-hole that coined the term, “Love-Hate Relationship”.

Some possible side effects of prednisone:

• Abdominal or stomach pain, cramping or burning – check
• backache – check
• fast, slow, pounding, or irregular heartbeat or pulse – check
• full or round face, neck, or trunk – check
• headache – check
• increased hunger – check
• lower back or side pain – check
• muscle pain or tenderness – check
• muscle wasting or weakness – check
• nausea – check
• nervousness – check
• numbness or tingling in the arms or legs – check
• pain in back, ribs, arms, or legs – check
• red face – check
• shortness of breath – check
• skin rash – check
• sweating – check
• swelling of the fingers, hands, feet, or lower legs – check
• swelling of the stomach area – check
• thinning of the scalp hair – check
• trouble healing – check
• trouble thinking, speaking, or walking – check
• troubled breathing at rest – check
• unusual tiredness or weakness – check
• weight gain – check

The Prednisone "Moon Face"

HOWEVER! This strange drug also gave me the opportunity to get up and out of bed, move around, leave my house, see friends, and have a little bit of “normal” during this flare.
I do wish that I could fit my wedding ring on my finger, but I would rather be able to get out of bed in the morning.

As I have been on Prednisone long term though, I’m not sure if your body gets used to the dosage and requires more the same effect, but I have been feeling almost just about as shitty as before, but with all of the above side effects. I know that the flare is still active since I still have my Dermatomyositis (DM) rashes as well as some new ones. I also have Gottron’s Papules in new places, like my toes. They’re getting so bad on my fingers that sometimes I feel like almost want to rip them off.

I am really struggling with having my heart race while I’m trying to sleep at night, or feel like I’m out of breath just when I’m trying to speak. I also can’t handle gaining anymore weight, because it’s making my body hurt as well as my self-confidence. 

I saw Dr. Grandits yesterday and we decided that it was definitely time to get off that F-er we call Prednisone. We took chest x-rays to make sure that my lungs weren’t being attacked by the DM and thankfully, everything looked good. Thank. God.

Dr. Grandits believes that getting Lyme disease last fall is what activated my Myositis and we know that trying to get off of the Methotrexate (MTX) certainly didn’t help. But if we hadn’t tried, we would always wonder if I could’ve had Maybe Baby on my own or that he/she could have been ours biologically. It’s hard not to wish that I never messed with my medication, but that is all in the past now. Hopefully, it won’t be long before we can look back on this flare as nothing but a memory.

Nearly all of my labs are back from yesterday’s appointment already:

10/15/15 Labs:
The labs that are back are mostly normal. No major organ problems, no liver, kidney, or blood cell count problems.
The inflammation markers are essentially normal (likely due to the prednisone), the c-reactive protein is elevated.
The CK is normal, the LD total is normal.
The chest x-ray is normal, no finding of fibrosis or lung inflammation. Your symptoms are likely prednisone and weight related.
Continue the methotrexate and azathioprine, taper the prednisone as we discussed. 

As mentioned above, I have begun tapering off of the prednisone. Hopefully I’ll be off in less than 2 weeks. I am a little nervous about the flare acting up again, but I just can’t take the effects of the prednisone anymore. I’ll also be increasing my daily Azathiprine (aka Imuran) dosage to take along with my full weekly MTX treatment.

If we can’t get the flare under control by my next appointment in 5 weeks (or even less), we will consider doing a round of IVIG treatments (blood/plasma infusion) or try some other drugs, such as Tocilizumab (which is traditionally used to treat Rheumatoid Arthritis, but the Mayo Clinic is currently doing a study on it with DM patients), Rituximab, an IL6 Inhibitor or Cyclosporine. I really don’t want to have to get IVIG, but at this point I’ll do whatever it takes to get better.

I hypothesized to Dr. Grandits about when you think about getting sick, your body generally wants to rest. Taking Prednisone makes it so you don’t have to rest as much, so essentially it’s going against what your body wants to do to heal. To me, that would make sense as to why being on Prednisone long term is so hard.
Of course, since she is a brilliant doctor who has studied all the ins and outs of chemistry, biology and the way that the body fights disease… I don’t think that she liked my analogy, but nodded to humor me since it seemed to make everything make sense on my end. Haaha.

I can tell that my body is trying to heal though. The past few months have been spent either in the office working, or sitting in bed watching movies. I sleep like I’m dead, wake up and am tired again by 3 in the afternoon. I sit with my husband at the dinner table and struggle to keep my eyes open, then it’s back to bed. God, I can’t wait to get out of this flare.

Will update again soon, and will hopefully be starting to feel better.
M