Mid-Infusion Cycle Check-In

Hello!

I’m a week and a half from my last infusion and just a few days from my next!

The first week got a little tougher after my last post. The fatigue set in pretty hard, as did that restless feeling in my legs. I tried to walk on the treadmill a little each day to keep any fibro flare from setting in, but it did.

I had some body pains from that, but I think that it also went away pretty quickly due to the clean eating and exercise regimen that I have been doing since the beginning of the year. Even though I felt like eating a bag of cookies and a bottle of Coke, I didn’t! I have learned that sugar is such a huge trigger for me, and the fear of flaring is greater than my desire to over-indulge and pig out when I’m not feeling 100%.

About a week after the first infusion though, I was pretty much back to where I was the week before, which is great since that is what I call the “old new” me! I have felt the best that I have in 10 years, which is something that I have celebrated each day since the changes started to take place.

Friday I was hurting, but just like the magic that has happened with the last infusions, Saturday was an entirely new day. I felt pretty great and even went to hit some golf balls with Brad (something that I haven’t done in 10+ years)! I don’t know how the excitement of feeling healthy again would ever get old. It is the best feeling in the world.

Since my last infusion had a reaction, and I have been feeling a little itchy on and off since, I emailed Dr. Grandits to talk about anything that we might want to change up for Monday’s round:

Hi Dr. Grandits!
 I have my next infusion on Monday the 22nd and just had a couple of questions, since I had a little reaction last week.
 Do you think that it would be beneficial to do the IV Benadryl in the beginning - or just stick with the oral tablet and hold the IV for just in case?
 I also have a friend who has IV Solu-Medrol before her infusions. Is that something that you think would benefit me?
 I am open to whatever - I just am feeling a little nervous about having anything come up.
 Thank you!
Maren

(Thank you Amber for that information!)

Dr. Grandits responded:

“Yes I would go with both medications in the IV form, Benadryl and solumedrol, to prevent a reaction. I will inform the nurses to do 25-50 mg IV Benadryl and 40 mg solumedrol prior to your infusion.”

So! From what I learned from my last “trip” with IV Benadryl (just kidding), I will want to eat a BIG breakfast before that medication hits my system, so that I can deal with that feeling of levitating out of the chair a little better. Haha!

These experiences can be a little rough, but they are also powerful information to use in the future. I wish that last round would have been a little better, but now I have that knowledge under my belt, so that I can be better prepared in the future. Hopefully this will help me to stay calm and relaxed on Monday.

To make sure that I’m 100% ready for the infusion, I’m also going to lay pretty low this weekend. Focus on getting my exercise in, getting enough sleep, and getting the right nutrients into my body. Prior to the last infusion, I had eaten some junk food over the weekend and had a few beers. The nurses said that definitely could have dehydrated me a little, so I want to make sure that I’m totally ready to rock and roll.

As always, a million thanks to everyone for their thoughts and prayers and for keeping an eye out for information that could be helpful to me. I really appreciate having such a wonderful team behind me.

I’ll keep you updated as to how Monday goes!
M

Rituxan Infusion - Round 1 of 2

Yesterday was round one of my Rituxan infusion.

Things didn't go quite as smoothly during the appointment as they did my first 2 rounds (back in December '15), however post appointment was much better.

My appointment was at 9:00 and we got started right on time. 

About 9:45 I stared having intense, sharp pain from the elbow down to my fingertips on the arm with the IV. After trying a few tricks and one more vein, the IV was moved to my inner elbow.

At about 10:30, I started having an allergic reaction to the medication. My legs started itching, I felt a tightness in my chest and my throat felt a little swollen.

The infusion was stopped and got an IV dose of Benedryl which almost made me pass out. It was intense. I was even slurring.

My Rheumatologist is not in on Mondays, but the on-call Doctor stopped in to check my heart and lungs and look for any signs of a rash on my legs. I was good, so we waited about 40 minutes and then fired the infusion back up.
In that wait time, I wolfed down a huge bowl of cantaloupe, a bag of trail mix, an electrolyte drink and a protein cookie. I think that it helped!

I was done at about 1:30 and out by 1:45. When I got home, I made some muffins, tidied up the kitchen a little then tried to get a little nap in, but I was having the worst leg "twitches" from sitting for so long.
It was driving me crazy, so I ended up walking on the treadmill for 30 minutes, which I think really helped.

I did start to get a little itchy again around 5:00, but taking another Benedryl took care of it.

The rest of the night was pretty normal. I just hung out in bed watching the Olympics. I was feeling a little tired and have had a headache, but have been a million times better than back in December.

I did have a little trouble sleeping last night, because my fibromyalgia (which hasn't been giving me much trouble lately, thanks to eating clean and getting more exercise) was making my heart do the "flip flop", so of course I was convinced I was having more of an allergic reaction and freaking out. This morning I have just have a headache and a hot, blotchy rash on my cheeks and around my eyes. Hopefully that will go away soon, as I get a little closer to the 24 hour mark. 

The fact that I haven't been sleeping and in pain since I got home yesterday (like last time) is really a testament to what this drug has done for me, and how far I've come since then. I'm praying that if this is the drug that is meant for me, that I'll be able to tolerate the 2nd round in two weeks.

I really have felt my friends and family with me through this and that meant the world to me. Thank you so much for the love and support! 

Maren

Great news!

If you haven’t heard it from me already, I was finally approved for my next round of Rituxan infusions! In fact, I have been approved through the next year, so that could potentially be two more rounds!

I just confirmed my appointment for Monday morning, the 8^th. I’ll then have the second infusion on Monday, the 22^nd.

While the anxiety has just started to set in, I am much more excited about the infusion this time around, and less scared.
My first infusion, I was excited yes, but mostly s#!tting in my pants. Once I didn’t die within 24 hours, I started to feel a little better about it ;-)

My most recent lab work showed improvement, however not yet totally in the clear.

From Dr. Grandits:
The labs show normal kidney and liver functions.
The blood cell counts are improving, improving red count and Hemoglobin improved.
The white count is lowish but stable and the size of the red cell is large (MCV) but again stable.
The platelets are normal in number.
Ok to continue your medications.

I have been struggling with my Dermatomyositis rashes, but keep plugging away with the topical medication that I have from my Dermatologist.
I’m only about halfway into the adjustment period for Plaquenil (aka Hydroxychloroquine), so it’s unknown if that is on board or not yet. I keep watching my skin for signs of improvement or at least a steady change, but nothing quite yet.

The rashes have been annoying, but whatever – I’m over it! I’m done wasting energy on them, or worrying about what they look like. If someone wants to think that I have some contagious skin disease and run away from me, then good for them.

DM Rash on Left Shoulder

Warning: No Makeup. LOL
DM Rash on Shoulders, Chest, Face and Scalp. Booo.

DM Rash on Upper Back and Shoulders

DM Rash on Right Shoulder/Bicep

I am happy to report that I have also been feeling awesome! I’m getting stronger every day and building my energy level so that I can do more without getting wiped out the following day (or two, or three)!
I am so lucky that my job allows me to save my energy for activities that I want to do, and also that I have breaks when I need them to get up and move around, or sit down and take a breather! 

I still struggle with little things here and there, but I am leaps and bounds from where I was just one year ago and couldn’t be more proud.
Example: First thing in the morning when I let the pups outside, it’s still a little hard for me to walk back up the stairs and it takes a little while for my muscles to get fired up and moving for the day. My thighs are also still the first thing to fatigue when I exercise. This is a million times better than last year when I could hardly walk up the stairs at all, and needed my husband’s help to move around. So, no complaints here!

So, Monday is the day! I have a few days off of work for each infusion, in case I’m groggy/foggy/not feeling awesome afterwards.
I cannot tell you how absolutely thrilled and grateful I am to receive this life-changing medication again. To know that I will continue to feel better and to improve makes me jump for joy. It feels so great to be able to walk around, be active and enjoy my life off of the couch! I am just over the moon.

I plan to have more great things to report! This weekend will be a fun one, so hopefully it will keep my mind off of any nerves and help me stay focused on the prize and keeping positive.

Thank you for your love and support!
M

Happy Almost July!

Hello there!

I thought that I would give a little update, so that my next post doesn’t rival War and Peace [again].

First off, the Patient Representative with my Rheumatologist is still working the case to present to my insurance to request the next Rituxan infusion. I went in last week for a tuberculosis (TB) test, which somehow would help my case (I didn’t even ask why at this point, I just did it).

I’m not too far off the plan for an early June infusion, but am starting to get a little anxious, since I have had a few changes to my symptoms that have made me a little uneasy. I feel that they are most likely due to some recent medication changes (will elaborate in a sec), but nonetheless, I am always wondering what will happen when my last infusion wears off.

The rash on my face is finally gone thanks to my 20 (okay, it's actually 4) different prescription cremes! My amazing Dermatologist has also recommended that I switch from my Triamcinlone (steroid creme) to my Tacrolimus ointment for my DM rash, since it's getting so painful, which can be an indication of thinning skin. Fun stuff. 

Some "educational" photos for fun:

Dermatomyositis rash

Ragged cuticles and nail fold telangiectasias.
Both very common in Dermatomyositis patients.

Gottron's Papules suck.

To refresh your memory, my last rheumatologist appointment was on May 26^th. At that time, my labs showed that my red and white blood cell counts were getting low. I was at 4 tablets of Azathioprine, and we decreased to 2. We also added Dapsone to see if it helped my skin rashes. 

First, this is a little embarrassing, but I’ll just come right out with it. Brown urine. 
I drink about 80-100 ounces of water a day, so my urine is typically clear, however I began noticing that in the morning, it was brown. 

On the medication leaflet that I was given with the [new] Dapsone prescription, it said to seek immediate medical attention if this occurred (since it could mean kidney disease), so I messaged Dr. Grandits, who ordered some labs along with my TB testing. 

I had also started to get really tired again, feeling like I needed to take a nap in the afternoon, and heading to lay down in bed after cleaning up after dinner. No Bueno. This is what I had just gotten away from.

After a few messages back and forth with Dr. Grandits, I told her that I just wasn’t feeling comfortable with the Dapsone, and was worried about my counts getting lower. I also don’t really want to get on a drug that will likely be long term that could be dangerous for me, and I don’t want to be tired all the time anymore…

6/29/16
Hi Dr. Grandits,

I’ve been thinking about your message from last night. I talked about it with my husband, who reminded me that I have been getting much more tired in the past month and have been heading into bed very early, which is something that I had gotten away from.

The red blood counts are a little concerning to me. I haven’t had a great feeling about the Dapsone, and the rashes on my back are pretty painful. I think that I would like to just move on.

I know that we had discussed trying the Cyclosporine next, however to avoid possibly having to get off and then get back on the Azathioprine if it doesn’t do the trick, I think that I would really like to skip ahead to door #3 and try the Plaquenil next.

Do you think that this would be okay to do? Does the Plaquenil tend to lower the red or white blood cells counts as well?

Thank you so much for all of your help and guidance through these medication changes.

Maren

----- Message -----

Dear Maren,
That is reasonable, the hydroxychloroquine is a more gentle drug in terms of affecting the bone marrow and other organs. 

You can stop the dapsone, no need to taper. I have sent a prescription for the hydroxychloroquine to your pharmacy, start with one tab daily x 2 weeks, then go to 2 tabs daily. 

Let me know how you are doing.
Martha Grandits, M.D. 6/29/2016 11:34 AM

So! I head back in for a checkup and labs towards the end of July. 

Hopefully I will have more information about the Rituxan infusion, my labs will be looking better, and I’ll be feeling less tired and have less skin rashes, too!

Until then, I hope that you are all enjoying the summer. The weather is gorgeous here in MN today!

Thank you for your love and support!
XO, M

Happy June!

Lots to touch on in this post! I’ll try to be quick! 

Aside from a nasty cold that hung around for a few weeks at the end of April, I have been doing really well, and the lack of posting has certainly been a "No News is Good News" situation! 

Hip pain update – gone! Whaaa?? I stopped using my beloved recumbent bicycle and the deep pain in my hips and thighs went away. So, for now I have not seen an orthopedic specialist. I just hopped back on that horse, I mean “bike” this week. So if the pain comes back you know where I’ll be headed.

I did learn that the MRI did not scan low enough to view the muscle tissue in the thighs. This was a little bit of a bummer, since I am always hoping to learn more about the current situation within the muscles and an MRI is the best way to see it.

In regard to the degeneration seen on the spine, Dr. Grandits said, “The mild degenerative change in the lumbar spine and previously in the neck are usually age related, or also can be related to trauma. It is not reversible, exercising, keeping muscles toned to support joints if important.” Good – I’m working on that!

I did have a check-up the week before last.

5/5/16 Labs 

The labs look good.

The muscle enzymes are normal. No systemic inflammation detected. 

There is no liver, kidney, or blood cell count abnormalities except a mildly low white cell count. 

The lyme screen is negative.

As a preventative, I asked Dr. Grandits if we could routinely check for Lymes during the warmer months. She had to fill out a reason on the lab request to which she selected “fatigue”, to which I asked, “Oh, was “paranoia” not an option?” She laughed, so that was the highlight of my appointment.

While she did report that my labs looked good, there were quite a few numbers in the highs and lows that have not been before. This is one of the many reasons that I recommend keeping your own records.

So, I sent her the following message:

Hi Dr. Grandits, 

Thank you for sending the labs so quickly. I had a few questions regarding my results. 

First, I noticed that the Lipid Panel mentioned that I was fasting and I was not. Would this change the results? 

Next, I noticed that there were quite a few new results in the high (Lymphocytes, MCH, MCV) and low (Red Blood Count, White Blood Count, Absolute Neutrophils) zones. 

Do these changes indicate anything that I should be concerned of, or that I could make changes to help correct? 

Given the lab results, do you feel that it is okay to go ahead with the Dapsone? 

Thank you!
Maren

Dr. Grandits responded:

“The lipid panel would likely be better (improved) if you were fasting.
The blood counts constantly fluctuate day to day with contributions from medications, general health, illnesses. Your changes are most likely medication related as you did increase the azathioprine...
The levels are ok to start dapsone...”

A quick tangent…

Here is a view of my own lab document. Because of this documentation, I am able to ask questions about my own labs that make sense to me. 

Having my blog has also been a great tool to look up how I was doing at a certain point in time. My doctor’s records are often only a peek into any given period, whereas this blog has become an invaluable tool, especially now that I have a smart phone that allows me to quickly look up information at appointments with various doctors, along with the new patient portals, which are great for labs as well.

While I always trust my doctors for the final word, their information and knowledge really isn’t helpful to me if it’s not absorbed by my own brain, and my brain likes spreadsheets.

Back to last week’s appointment!

My skin symptoms have not been getting any better, and honestly, I’m at a breaking point with it all. Every day is a new kind of rash somewhere. They itch, burn, and are not always pretty to look at. My dermatologist really wanted me to try Plaquenil for this, since she had been reading about it’s effectiveness with Dermatomyositis (DM) skin symptoms, even though it didn’t seem to do much in the past for the internal part of the disease.

Dr. Grandits has been noticeably less enthusiastic about this option, and always recommends an alternative. When I asked her the other day, she just said that she doesn’t think that it has been very effective for her patients, and would like it if we tried some other options first.

So, I took a quick 4 day blast of prednisone to wipe my system clear (for lack of a better term) and we have started a new [for me] drug called Dapsone, which was created to fight the skin symptoms of leprosy. Aside from a slight hit to my ego, I’m willing to give it a shot.

I am decreasing the Azathiprine back down to two tablets (which, in my mind, that is the culprit for the worsened skin symptoms).

I currently have a small, but very painful DM rash between my right shoulder and neck, so I have been watching this closely as I slowly increase my dosage of the new drug. And, my hands have been a hot mess for a while, so I’m keeping a close eye on them as well. After a week and a few days of the Dapsone, at two tablets, the burning of the rash is gone (although it is still a little red) and the burning/itching of the Gottron’s Papules on my hands has subsided.

I can go up to 4 tablets, but if the symptoms start to respond, I can hold at that count. If, after a few months, the Dapsone doesn’t do the trick, I’ll try a drug called Cyclosporine (which would also take the place of both the Dapsone and Azathiprine). I can’t remember why this one scared me a little more than the Dapsone, which is why it is the second choice… apparently I didn’t feel the need to write that down in my notes. If then the Cyclosporine doesn’t help, we will finally try the Plaquenil once again.

I also asked about a Biotin supplement, which many of the people in my support groups take to help grown new, healthy hair after losing it from the various drugs. It also can reportedly help maintain healthy skin. I have lost a considerable amount of hair since last fall, but thankfully, prefer my hair to be short, so it doesn’t bother me. The only thing that is a little weird is having less eyelashes than I am used to, but they’re coming back. I also know that my hair is coming back since there are 2” long hairs sticking up all over my head.

To avoid the risk of trying too many new things at once, and then not knowing which is helping, I will wait on trying Biotin, at least until I land on a drug to help with my rashes.

I did stop using the CoQ10 because I just didn’t notice any difference in the way that I felt. I noticed a bigger change when I switched to Almond Milk! I take enough pills, so I was glad to ditch this one.

Lastly, Rituxan! We are currently going through the pre-approval process for my 2^nd round of infusions. Hopefully we will stay on track to have them this month, although it is already taking longer than I anticipated.

I have continued to feel a little more tired since my last post. While, still leaps and bounds ahead of how I felt before, it is definitely different than where I was at about the 2 month mark after the first round of infusions.

If my insurance doesn’t cover it, I can’t receive it. So, I have been really hoping that Blue Cross can understand my need for this drug, even though it isn’t on their policy listing of diseases approved to receive it.
Rituxan has given me a part of my life back that I feared was gone. I suppose if I cannot get the infusion again, I will forever be grateful for being able to have these past 6 months and knowing the feeling of being able to walk around and be lightly active again. But, I have to admit that I would also be devastated, scared.

Dr. Grandits did recently attend a conference where they discussed whether two infusions were necessary (versus just trying one per round) for keeping DM under control or in remission.
This would not be an option quite yet for me, since I’m still trying to get to that point, but I hope that it is something that they learn more about in the future, as maybe it will encourage more insurance companies to allow patients to receive this drug.

So, now we wait! As soon as I hear back about the infusion, I’ll update!

In other news, I have now lost 20 pounds since the first of the year, and my glucose is now back in the healthy zone. I did also have my cholesterol checked (the aforementioned "Lipid Panel"), and that was all over the place.
Dr. Grandits said, “The Hemoglobin A1C is very good, no diabetes indications. The cholesterol is mildly elevated for the total, of the components the triglycerides are mildly above normal, the HDL (good) cholesterol level is good and the LDL (bad) cholesterol level is also good (130).” 

I did a little homework (thank you, Google) about triglycerides and they are can become elevated with poorly controlled diabetes (nope), underactive thyroid (nope), kidney disease (nope), regularly eating more calories than you burn (not any more), drinking a lot of alcohol (not any more), obesity or too much fat around the waistline (BINGO!). Apparently steroids can elevate triglycerides as well, and I have been on prednisone quite a bit in the past year.

My primary physician said that my results would have likely been "better" had I been fasting, but ordered an A1C test for herself after I shared the results with her. I'll update on those results when I have them.

I still have 25 pounds to lose to get back to my healthy weight/size; hopefully as I continue on this path, I’ll get all of these numbers back where they should be! I have enough s#it going on in my life to risk getting heart disease or having a stroke.

Lastly, this past May was [the new] Myositis Awareness Month!
Before, Myositis just got one day in September for the whole year! Now we get the month of May to increase awareness of these diseases.

The average myositis patient sees 10 different doctors and waits over 3.5 years before getting a proper diagnosis. Please visit myositis.org to learn more, and consider either making a donation to The Myositis Association or spreading the word yourself!

I feel like in the 6 years since my diagnosis, I am finally feeling some momentum with the research and “marketing” of the disease. As information is available to more doctors, and the amount of accurate diagnoses increases, so do the number of people affected by myositis (patients, friends, families), and the need/desire for improved research and medication grows! I am really hoping that I will be able to see a significant positive change for myositis patients in my lifetime, especially for all the precious Juvenile Dermatomyositis Warriors!! 

I want to thank you all for not only supporting me, but for taking the time to learn with me over the course of the last 6 years. It has been a bumpy ride, but I am better because of it. I have learned so much about all the wonderful people who love and support me and my family. I am truly blessed.

Hope that everyone's summer is off to a great start!

XO,

Maren

Hallelujah!

No Avascular Necrosis!
Yaaaaayyyy!!!

via GIPHY

Seriously. I can't lie. I was freaking out about the possibility of having to deal with dying femur bones. I am so relieved.

It's been a while since I had to wait more than a matter of days to get any information about my health, or questions answered. It's also been a while since I have had an unknown diagnosis that was potentially as serious as avascular necrosis.
I believe that the last scare was a multiple sclerosis overlap about 2 years ago, which was thankfully negative as well. But even then, the MRI was ordered, performed and evaluated in about a week. This four week wait felt like an eternity.

Ugh! I am so relived.

Here are the official MRI results:

“The hip MRI's are negative for bone destruction such as avascular necrosis. The cartilage is normal, no fractures, no joint effusion, no muscle inflammation, no tendon tears, the sacroiliac joints are normal.
There is mild degenerative change in the lumbar spine.
A small defect is seen at the right hip where the cartilage has separated from the labrum on the top of the joint. The labrum is a piece of rubbery cartilage (fibrocartilage) attached to the rim of the shoulder or hip socket to keep the ball of the joint in place. Tears can occur with injury or as part of aging. No treatment is needed unless causing pain, the defect can be repaired.
If you are still having difficulty I would have you speak with an Orthopedic specialist.”

I responded to Dr. Grandits with the following questions:

When you mention that there was no muscle inflammation - does that include the thigh area where there has been inflammation in the past? (This would be a major “YAY!”)

Since I have been having the shooting pain in the thighs, could this potentially be activity or changes in the muscle tissue that I'm feeling?
If you think that an Orthopedic Specialist may be able to shed more light on the pain and any reasoning behind it, I would be happy to speak with one, as the pain in my hips and thighs has been pretty bothersome.

 Lastly, I remember that you said that a degenerative change was also noticed on the MRI done of my neck a year or so again. Is this something that I should be concerned about now that it is also on the lower back?
Or perhaps an Orthopedic Specialist can address most of these questions?

I am anxiously awaiting her response and will share once I have more information. After reading a little more about labrum issues in the hip, I did some movements that are supposed to aggravate the area and I’ll be damned – I got a pain response! 

I am very curious to see if that pain can trigger the shooting sensation or if that is something else going on in my thigh muscles, where I have had cell damage from past flares. Maybe those muscles are trying to regenerate? Maybe they’re toast? I don’t know. This is Grade A doctor business, so I’ll wait to see what the pros think!

I continue to progress in a positive direction, however I have had a little trouble with fatigue in the past couple of weeks. I would be willing to guess that the stress and anticipation of the MRI results greatly contributed to my exhaustion. While a great day with family, Easter totally wiped me out.
I still struggle with having more than one “activity” per day as well, however I’m happy to report that taking a shower and getting ready is no longer counting as an “activity” in itself! This is major progress!

I hope that I can share more positive news soon!
Stay tuned!
M

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