October Update

September October Update

How does summer fly by so quickly? I wasn’t too upset this year, since this is the first autumn in 2 years that I am not recovering from shoulder surgery! It’s been nice to be slingless for my favorite season.

We have been monitoring my CK levels and I’m happy to report that they seem to be going back down. Not in the normal range yet, but on the right track. We will retest next week.

I had my fall infusions in October, both of which went well but have really wiped me out this time around.
I’m nearly 3 weeks out from the last round and still find myself needing to get in a power nap on most days; but I’m back to Pilates class and my usual routine, so that is great. Now if I could just stop eating Halloween candy, I’d be set!

I did have a “learning experience” at my first-round infusion at the beginning of October…
I love having my infusions at Mercy Hospital, because they use IV Support no matter what. IV Support is the team of IV champs who use ultrasound and nail it on the first shot, every time. All they do all day is put IVs in. They’re amazing.

I should have known something was up when not one, but two IV support nurses came into my room; but I was high on IV Benadryl, so I’ll blame that for my lack of suspicion. I’ll spare the details for the faint of heart, but after 2 attempts the other nurse took over. I whispered, “thank you” to which she whispered back, “I’m sorry”.

I spent the rest of the day with heat on my arm to reduce the chance of clotting. My entire left forearm was purple for 2 weeks.

The hospital is giving other nurses the opportunity to train with the IV Support team, which is great; but when the same novice IV nurse came into my room two weeks later, I was ready to decline my participation in that teachable moment.

Any other time: bloodwork, shots, whatever, I’m okay being a Guinea pig, but not my infusions. When your veins are crap from immunosuppressants and IVs and you’re about to sit for 4 hours to get a life-saving drug, no, I don’t want to be experimented on. Just let me try to pretend that this is normal and have a “positive” experience.

And you know what? She was totally cool with it. She said, “That is your right to decline.” Really, it was my right to be notified beforehand, but that is a rant for another day.
Passing this info along to anyone who needs the reminder that it’s okay to speak up for yourself!

Rheumatologist next week! TTFN!
M

August Update

Hello August! 

We rechecked my Creatine Kinase (CK) levels last week and it has continued to rise.

My rheumatologist is not ready to put me on additional medications quite yet, and I'm 100% on board with that. The gradually elevating counts could be due to increased exercise and my doctor does not feel that I am at a level that could warn of permanent tissue damage at this point. 

I know that my muscle tissue is different than others and that I need to take great care to not over-exert or exhaust it. Planning for a couple days between exercise to recover is really important, too.
I think that I've found this perfect balance with Pilates. I am finally feeling like I'm getting a good workout in without being wiped out for a week afterward.

An elevated CK indicates there is muscle tissue inflammation or damage occurring in the body. It's also important to note that an elevated CK can mean absolutely nothing! I need that reminder, myself.
This is the first time that I have ever had an elevated CK level outside of one test that I had after being treated for Lyme Disease in 2014. I have been incredibly sick in the past with a perfectly normal CK. 
The CK level can be a great tool to track muscle damage in some patients, however it can be absent or useless in others:

CK levels are often used to evaluate the progress of disease after treatment. This is not a reliable measure of disease activity, however, and normal enzyme levels do not completely rule out the possibility of muscle inflammation. Myositis patients sometimes wonder why they feel better or worse than their CK levels indicate. Levels may lag behind the improvement or worsening of the disease, and they may be affected by activity or other factors.  Additionally, in advanced disease, serum muscle enzyme levels can be persistently low in the setting of major muscle weakness.

 - Myositis.org

I'm tired, but I have also been busy and active; I can easily understand or explain why I might be a little more wiped out. I haven't felt any extra weakness in my legs or arms, either, which is huge. 

I'm hoping that at some point my CK will either plateau or go back down into the "normal" range. 
Sooner than later would be great, thanks *wink*. 

This was just going to be a quick update, but most of you know that I can't make any story "quick". Haha!

Enjoy these fleeting warm months 🌞
Will update when we retest in 8 weeks!
M

July Update

Hello and happy April July!

April brought me to Florida to visit my in-laws and to the hospital for 2 rounds of Rituxan infusions.
I got to experience both warm, 70⁰F days and another historic Minnesota blizzard in the same week!

Both infusions went well, but soon after I found myself tending to a broken heart as our sweet pupper, Teddy passed away in May. 

We got 2 and a half years of #BonusTeddyTime after his aggressive cancer diagnosis, which was the greatest gift I could have ever asked for. As anyone who has loved a dog knows, it could have never been enough time. I miss him terribly. 

I had a check-in with my rheumatologist in June and have admittedly been a little on guard since. My CK levels came back elevated for the first time in five years and I have been feeling exhausted.

There is a slight chance that the slightly elevated CK could be from “normal” muscle inflammation from exercise, since I have been going to Pilates class 2-3 times a week, but I’m not sure if that is the case. 

We’ll recheck in a couple of weeks to see if it has improved. I don’t even want to think about the what ifs, but it’s hard not to.

I will update as I learn more, but no news is [generally] good news when it comes to this blog!
Next infusion isn’t until October, so here’s to a wonderful summer! 🌞

XO, M

Q & A

As this blog reaches out to more people (roughly 2,000-3,000 per month and from readers all over the world), I find myself getting more and more of the same kinds of questions. 
I thought that I would write up a quick Q&A of some of the reoccurring questions that I get! 

I also really recommend that you use the search feature in the upper left corner of this blog. 
This is where you can search by keyword to find posts about all of the questions above when I wrote them, so you will get a lot more in-depth info. I am certain it will be helpful. 

I’m always happy to respond to messages and comments, however I’m not always super quick with my turnaround, so I hope that this helps!

Here we go!

Would you mind sharing how you came to a final diagnosis?
My diagnosing factors were a muscle biopsy, skin biopsy, EKG and MRI that all showed dermatomyositis in the tissue. I also had a positive ANA.


My ANA came up positive in a speckled pattern, was yours? Did you have specific antibodies? 

I had a speckled pattern ANA, but that doesn't specifically show Dermatomyositis (DM). The DM was clear as day on my biopsies and MRIs. A mixed connective tissue disease is pretty common when there are a few things going on. 

I have been told that no two DM patients are alike. DM can present itself in a variety of ways both symptomatically and internally. Some DM patients have no symptoms at all other than labs that indicate the disease. 


Do you have a high ANA? 
Yes, I do! 1:640 speckled pattern, to be exact. 

The ANA test is a simple screening test to look for antibodies in the blood that are attacking proteins in the nucleus. A limitation of the ANA test is that it does not identify which protein the antibodies are attacking in the nucleus. It just indicates that there are antibodies in the blood against proteins in the nucleus.

Your ANA is just a number that indicates that there is autoimmune disease in the body. They do tend to be large numbers, but having a larger number doesn't necessarily mean that it's "worse". 

This number may be slightly different with different testing methods, but will pretty much always be the same. 

For the ANA test, 1 part of the serum is diluted into 40 parts of diluent (called a “1:40” titre). This diluted sample is tested for the presence of ANA antibodies. If the test is positive, a new sample is made at half the strength (1:80) and tested for the presence of ANA. The test is repeated every time it is positive by diluting the sample to 1:160, 1:320, 1:640, 1:1280, and finally 1:2560.

Read more here. 


How did you get through the diagnosis process, where no one knew what was wrong?
The diagnosis process can be very hard since it’s difficult to stay present among the unlimited possibilities. The unknown is always the scariest. Staying focused on the positive, the present and the facts that I do know is what has worked for me.

I began seeing a therapist immediately after diagnosis. It can be hard to go through all of the emotions of the diagnosis process and absorbing the facts surrounding the disease and how it may or is affecting your life. 

I certainly talked with my husband, family and friends about what I felt; but I also recognized that they were dealing with their own fears and emotions about my diagnosis as well, so I wanted to have a place where I could vent and take a little of the load off of them. 
I also wanted to have someone help me navigate my feelings and help give me tools to process the information and not let it steal my joy. 

This may not be the answer for everyone, but it is what worked for me! 


Did your knuckles change? Flat topped, thicker skin, purple underneath on the joint?
I do have "mechanic's hands" and Gottron's Papules on my fingers and knuckles and occasionally on my knees, elbows, toes. The Gottron’s papules were what actually led to my initial diagnosis.  

They kind of suck, sometimes hurt and always itch. Fortunately, I only have them on a few fingers at the moment. I use a compounded topical Triamcinolone 1% (steroid) cream in a Versa base (I’m allergic to the regular pharmacy version). It helps, but doesn’t make them completely go away. 

I was told that [I think it was] Plaquenil helps more with the skin symptoms of DM, however Plaquenil hasn’t worked for me in the past. 

Sunscreen helps prevent and protect me from all of my potential skin symptoms. My favorite brand is Supergoop, since it works really well for me and is the least irritating to my skin. 


Have you tried Cellcept?
I have not tried Cellcept yet, but it is the next drug in line if I need to add anything. 
I will say that it took me a few years to settle into drugs that were working for me and then added Rituxan a couple of years ago and that is what really did the trick! 

I wouldn't be where I'm at today if I didn't demand to keep trying, as being "okay" was not good enough for me. I wanted to feel great! 


How do you avoid flares due to the effects of sun and stress?  
Diet affects me greatly. Too much sugar, dairy and processed grains make my body feel like lead and increase fatigue. 

I have tried the Autoimmune Protocol (AIP) and also an Anti-Inflammatory Diet, and seem to do best with a somewhat modified combination of the two. I do recommend starting with AIP for at least a month to see how it affects you. I learned a lot from doing it for a few months last year. 
For a list of books that I use to eat/live AIP (or AIPish Haha) visit Maren.link/TheMarenUpdate

I try to avoid being directly in the sun for extended periods of time and always wear sunscreen. Supergoop is my favorite brand.
I also have quite a bit of sun protective clothing. I like Coolibar and LL Bean. All of my golf clothes have protection as well. 

My best tip is to keep an SPF rated scarf/blanket (they have them at Coolibar) in your bag so that if the sun is intense, you can always cover up your arms when driving, or a spot on your body that the sun may be hitting if you’re sitting outside.

Stress is huge. I see a counselor to vent and complain. Ha! This particular "method" works for me, as it helps me to keep positivity at the forefront of my everyday life, which is everything to me. 

I also plan for time to relax and/or meditate each day to help calm my busy mind and rest my body.
It has taken years to adjust, but my husband and I are finally used to my “schedule” of needing to rest and recover throughout a busy week or day. 


What are the best exercises for rebuilding gently? I read that you golfed and seemed to have an active life, being normal again. 
After my first flare, I learned some really great exercises at the Mayo Clinic and then went to physical therapy to work on strength and mobility. I still use a lot of these techniques today, just to keep moving. 
A recumbent bicycle and gentle yoga are what I used to start slowing gaining back muscle strength after my last major flare. I was too weak to walk, so sitting at the bike was perfect. 
There are a lot of gentle and chronic pain yoga videos online. I love a couple of DVDs - Yoga: Gentle Practice and Healing Yoga: Common Conditions. 

For the items that I have used to slowly and gently build back strength after flares, visit Maren.link/TheMarenUpdate

As long as I’m allowing time to rest and pace myself (which includes being able to work from home), I am able to use the “spoons” that I have each day for things that I love to do. For example: I know that if I’m going to golf one day that I can’t also run errands or work out.  

This has taken a long time to adjust to, but it’s how I’m able to live that “normal” life. 
Also, getting the Rituxan infusions is what finally got me over that hump, where I have enough energy to be active in general. 


Where do you find support online, or meet other people with Myositis? 
I have been a member (and previously a moderator) of Ben’s Friends (BF) for years. 
While other groups have quite the voice and presence, the Myositis group within the BF community seems to be one of the quietest. Facebook continues to be the greatest source of support groups for DM and other Myositis diseases, in my opinion.
I’m not super active in the online communities these days, but I like to utilize the search feature in Facebook groups to look for commonalities to questions that come up. 
It’s nice to hear about how various things worked (or didn’t work) for others in the same situation or how different experiences or symptoms presented themselves. 

Here are some that I belong to: 
Myositis Support and Understanding
Dermatomyositis and Polymyositis Patients
Myositis “Ramblers” Keep in Touch Group
Support for Dermatomyositis and Polymyositis Patients
Dermatomyositis
Brandt the Bionic Warrior
Caregiver Support Community
Myositis Smiles

By sharing my own story, I have also found people in my own life who have experience with Myositis. I have even met other patients! It’s crazy how a rare and uncommon condition can spread out its feelers and affect so many people.


What have you taken for flares?
As much as we want to avoid aggressive drugs, a flare is not something to take lightly. The goal is to calm the flare as quickly as possible. Flares can decide to go south quickly, so being prepared with a plan that you and your rheumatologist feel good about is critical and can save your life. 

Prednisone is really tough on the body, but it can also save your life. It's good to take when needed, but in my opinion, as well as my rheumatologist - it's also best to get off of it as soon as you can. 

There are other supportive care drugs that your rheumatologist can recommend to help your body rest, including pain medications, sleep aids, appetite and nausea meds and more. This is a “Don’t be a hero” example. The goal is to nurture your body and get out of the flare. 

When you flare, your body is begging for rest, so give it that gift. 
Rest. Put good foods into your body. Try to reduce and eliminate stress. Get gentle exercise when you can. Let people who love you help you. 


Does Fibromyalgia still affect you? 
Diet, exercise and Gabapentin have helped make Fibromyalgia one of the least of my concerns. If I eat poorly or don't move enough however, I feel it.

Thankfully, I have learned how to manage it for the most part over the years through a lot of trial and error. If I'm doing everything that I can to be healthy, it generally doesn't give me too much trouble.


Can you get pregnant? 
Yes and no. Plaquenil is a safe immune-suppressant that you can take while pregnant. 

I have taken Plaquenil in the past, but it unfortunately did not work for me. In fact, the last (and worst) flare that I had in 2015 was when I attempted to taper off Methotrexate (MTX) to see if we could get through the 2 month post-MTX pregnancy period to either try for a baby, or if anything, harvest eggs for a surrogate. 

I didn’t make it very far into the taper process before the flare began, which took 6-8 months to come back from, and an additional 4 months for strength and mobility. My husband and I decided that we would not continue to try for a biological child. 

It’s extremely dangerous to get pregnant while on immune-suppressants such as MTX. It’s also very risky to have a pregnancy with Azathioprine (Imuran) or Mycophenolate (Cellcept). 
With MTX, if you don’t lose the baby within a matter of weeks, the child is extremely susceptible to devastating birth defects and a dangerous pregnancy. 

Aside from drugs, one important key to keeping a flare away is being able to rest and pace yourself through life’s daily tasks and activities. Some days I feel like I can do anything, while most days I really need that rest and recovery time. 

This is a little bit of a sensitive subject for me, but sharing info that could help someone is more important to me than my feelings. I just ask that people please be gentle with me when talking about the future of our family. 


I am scared that my rheumatologist will want me to take methotrexate. Have you taken this drug?
I have also been taking methotrexate (MTX) for about 9 years. It's a safe drug to use with minimal side effects. I started with the full dose of pills at once, then tried the injection, but those options didn't work for me; now I take 1/2 the dose on Sunday night before bed and the other half on Monday morning. 

Being sick is worse than dealing with some minor side effects, in my opinion. You have to weigh the pros and the cons and consider your quality of life. There have been a lot of things that I have been afraid of over the years since I was diagnosed, but there is nothing that scares me more than not being to live and enjoy my life.


I hope that the aforementioned info has been helpful! 

Please feel free to tag on any questions that I may have missed in the comments. 

M