Wednesday, June 8, 2016

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!

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 2nd 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 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!




  1. I have been struggling with getting an accurate diagnosis of DM. Been to a million MD's of various types. The only rash I have ever had is around the eyes - not really heliotrope but know it presents so differently in each individual. Deff have a connective tissue disease just don't know which one or how many. So scared. Found you early on when this all started and appreciate your genuine honesty and positive spirit (this can be hard for me some days). Just waned to thank you and really glad that you are feeling better!

    1. Hi Mary Kay - thank you for your support!
      I am so glad that I can offer any info or positivity for you - you are right, this can be tough!
      If you have a persistent rash, I would find a great dermatologist to see if they can biopsy it - that is how I was initially diagnosed.
      Now my Dermatologist and Rhematologist work closely together to try to keep my internal and external symptoms in check with the medications that I take. Since external symptoms can still be a sign of a flare, even though the internal symptoms are stable.
      There are other mixed connective tissue diseases that carry signs from various autoimmune diseases but don't land on just one. There is also such thing as only having skin symptoms and no internal symptoms, too - so if you have a rash, it may not mean that there is any inflammation going on inside of your body that is of concern - so that could be good!
      If you haven't already, finding a great doctor that you trust who you can discuss your concerns with openly should be a very powerful tool! I hope that you can find the answers that you seek soon for peace of mind and the beginning of healing!
      All my best,