death by a thousand cuts

My status update

As most dermatomyositis and polymyositis patients can attest to, recovery from the onset of the disease or from a flare-up can be a frustrating process. Some weeks you feel improvement and others you feel you are slipping back. After a few weeks of not sensing any improvement, I have felt more energetic the last two and am happier as a result.

It has been a very busy week or so for me. I have seen my rheumatologist, primary care physician, dentist twice and spent five days in Reno attending the TMA Annual Patient Conference.

My rheumatologist visit went well. I see him monthly and so he is in a good position to gauge my strength level. He noticed my strength improving. My hips are the weakest and he also could see my rotator cuffs being particularly weak. I have not started any exercise to strengthen these areas yet. I wanted a few good weeks of recovery before I begin. Yes I know that exercise is probably the most important treatment for our condition after the drugs we take.

Finally I have started to taper down on prednisone. I have been on 60mg daily for a month and am now tapering by 5 mg a week. Some doctors at the TMA Conference are comfortable tapering by 10 mg a week when on higher doses, but I feel 5 mg tapering is a comfortable level for me. You never want to taper too much and risk exacerbating the flare.

After six weeks on high doses of prednisone, I am exhibiting a lot more of the side-effects. I have frequent headaches. Usually I can tolerate Ibuprofen pretty well, but not lately as it causes me an upset stomach. I am drinking a lot more water to see if that helps. I have started taking Ambien to help me sleep better at night. Even though I take all my prednisone by 8 AM, I still can only manage four hours sleep at night. Ambien has allowed me to get a full night’s sleep. I did learn to take it after I put my son down to sleep and not before as I am out for the count after 30 minutes. In addition an hour after taking the prednisone I start sweating profusely, particularly my face. This lasts about 20 minutes.

My brain fog is starting to lift. I participated in a DM/PM focus group at the TMA Annual Conference. There were ten of us in total, where we sat around a table for two hours to openly discuss our quality of life issues. Brain fog was an issue for just about everyone. I recalled how when cooking eggs for my son one morning it took over 30 minutes to come up with the word ‘scrambled’, which I thought was very apt for how my brain felt. Apathy and fatigue were also major issues. When we wake up in the morning we are full of plans for what to do that day, only to achieve little and feel depressed about it at the end of the day.

My major side-effect with prednisone lately has been nicks and cuts. I started getting them all over my arms, hands and legs. Every day I get new ones sometimes over an inch long. Prednisone does thin the skin. They are not sore, but they sure make laundry more difficult. The mysterious aspect is that I never remember doing anything like brushing against a wall or banging against furniture to get them. I just see them when I undress. When I went to Reno I started to get nose bleeds. Even though Reno is at 4,500 feet and a dry climate, I thought it would not be an issue for me. I live in Highlands Ranch, which is at 6,000 feet and an almost equally dry climate. Since I got back from conference, the nose bleeds have not stopped.

My rheumatologist mentioned I may go back on Rituxan in October if my condition does not continue to improve. We are also keeping IVIG in the background. I have not done it before and I attended a lot of IVIG sessions at the conference to learn as much as I could. There were several booths on IVIG home infusion services there. I will blog more in detail about IVIG soon. I did learn a lot at the conference from patients who regularly take IVIG who I am indebted to.

I wish I could tell you what my CPK numbers were for September. I do monthly blood draws and was hopeful my CPKs are continuing to drop. All my other blood results came back, but not my CPK value. I have been going to LabCorp for seven years and this was probably the only painful blood draw I got, which makes it more annoying. The prednisone is not helping. I still have the bruise from the blood draw site a week later.

I saw my primary care physician yesterday for other issues but also get my flu and pneumonia shots. It was seven years since my last pneumonia shot and so I was due for another.

I am back seeing my dentist again after procrastinating while dealing with my flare-up. I grew up in Ireland and never had a good experience with dentists. As a result I went through a period from my teenage years through my twenties where I did not take good take good care of my teeth. Now in my late forties I am paying the price for it. A common issue with DM patients I have met is gum disease and other dental problems. I do not know if this is as a result of us being on immuno-suppressant drugs which make it harder for our bodies to fight off infections. Thankfully I have a wonderful dentist here in Highlands Ranch who works great with nervous patients like me.

A final word on Acthar. As you know I did not have good success with the drug. At the TMA Conference I met four other patients who took Acthar. In all cases they had a positive outcome with the drug in treating their myositis. In one case when the standard dosage of bi-weekly injections did not work, which I did, the patient switched to a more frequent, lower dosage treatment which helped their condition.

 

feel like a guinea-pig?

Ongoing trials for DM/PM patients

I have only participated in one clinical trial in my life. It was for a hypertension drug back in the early 1990’s. I have not participated in one for dermatomyositis. However, I have used medications when they were still considered novel treatments, such as Rituxan in 2007 and Acthar this year. Those times I have felt like a guinea pig.

 

GUINEA-PIG-WEIGHT-L_786613i

 

The Annual TMA Patient Conference in Reno, which I attended, has just concluded. Dr. Lisa Christopher-Stine from the John Hopkins Myositis Center, click here,  gave a talk on Promising research PM, DM. Click here to see that presentation, I thought I would mention a few of the ongoing pharmacological trials.

 

Safety and Efficacy of BAF312 in Dermatomyositis

This is where I dangerously pretend 10 minutes of google searches is a perfect substitute to attending med school for 7 years and having a medical practice! From what I understand BAF312, also called Siponimod, acts on certain types of white blood cells (lymphocytes) which are involved in autoimmune attacks seen in MS and other disorders such as dermatomyositis and polymyositis. It binds to special locations (or receptors) on the surface of the lymphocytes, called sphingosine-1-phosphate receptors (S1P-R). This causes a larger proportion of lymphocytes to be retained in the lymph glands, and thus not reaching the target of such attacks, which is muscles in myositis patients.

The trial is currently recruiting. Click here and here for more information.

 

 

Safety and Efficacy of BAF312 in Polymyositis

Please read the previous section on how the drug works.

The trial is currently recruiting. Click here and here for more information.

 

 

Tocilizumab in the Treatment of Refractory Polymyositis and Dermatomyositis (TIM)

Again I will caution you to my lack of understanding of anything medical. The following is an excerpt I gleaned from how the drug works in rheumatoid arthritis.

“Tocilizumab works by blocking a cytokine known as interleukin 6, or IL-6, which is believed to be one of the factors that cause inflammation in rheumatoid arthritis. Tocilizumab is an antibody that blocks the spot where IL-6 attaches to the surface of cells. When IL-6 is unable to attach to these cells, it is unable to activate them or turn them on. As a result, the cells are unable to drive inflammation in rheumatoid arthritis.”

Dr. Chester Oddis from the Division of Rheumatology and Clinical Immunology at the University of Pittsburgh, click here, is one of the principle investigators. He referenced the trial at the annual conference.

Click here for more information.

 

Acthar in Treatment of Refractory Dermatomyositis and Polymyositis

If you have been reading our blog, you will know I did not have success with this drug. However I will add a couple of caveats. I met four other patients at the recent TMA conference who took Acthar. In all cases they had a positive outcome with the drug in treating their myositis. In one case when the standard dosage of bi-weekly injections did not work, which I did, the patient switched to a more frequent, lower dosage treatment which helped their condition.

I blogged a piece about the history of Acthar and how it works. Click here  for that article. The study is led by another TMA MAB member from the University of Pittsburgh, Dr. Rohit Aggarwal.

Click here for more information.

 

IMO-8400

The manufacturer of this drug, Idera Pharmaceuticals, had a booth at the recent TMA Annual Conference. They were taking names for an upcoming trial for use of the drug in dermatomyositis and polymyositis patients. I was unable to find any info on the trial and it is not listed on the clinical trials web-site. Some details on how the drug works can be found on the Idera web-site by clicking here.  Nicole spoke to the representative quite a bit, and we have information cards we’ll hand out at our Picnic in the Park and November 2nd KIT meeting for those interested in signing up for the Idera trial.

bone up on supplements

We learned that prolonged use of steroids reduces bone density – not good news considering that the first (and sometimes only) course of treatment for DM & PM is usually high-dosage prednisone then a maintenance course of steroids.

While discussing this with fellow DM patient Laura Clark-Moore (check out her myositis blog Laura’s Mind Escape here) she told us about Bone-Up (by Jarrow).

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Click here for the Jarrow Bone-Up webpage. We are asking Mo’s rheumy if he would recommend  using this product or similar – we’ll update this post when we hear back from his doc!

**As always, we urge you to check with your doctors before adding any type of supplement to make sure it won’t interfere with your course of treatment and medications.**

water water everywhere

Wow! Do we ever have a LOT of information to share with you from the 2014 TMA Conference! While we sort it out and get the posts ready, here’s a quick idea we came up with while walking through the airport yesterday.

Exercise is important to everyone’s health, and is particularly important for myositis patients! To see all our past posts: click here or browse the Exercises category. The research supports low-impact exercise, with the emphasis on repetition (reps) and not weight lifting. Lifting something small often is much better for us than lifting something big just once. Makes sense, right?

As we were walking to our gate yesterday we discovered a new and widely available exercise equipment, something I’m sure you’ve seen…

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A 500 ml bottle of water is quite possibly the best weighted exercise equipment ever invented!

  • The 1 Pint (500ml) bottle weighs only one pound, great for lots of reps!
  • The bottle fits perfectly in your hand and many are designed with built-in grips!
  • You can find bottled water just about everywhere so you can exercise just about everywhere!
  • You can exercise a huge range of motions (bicep curls, triceps, pecs) just like a metal dumbbell!
  • After you finish your reps, you can drink the water to rehydrate!
  • After you drink the water, you can recycle your bottle or refill it for your next workout!

 

 

 

WHAT THE F!!!

Mo and I are taking a break from the conference before more afternoon sessions and a 5:30 focus group.

We are at the pool, hard cider and Miami Vice (one of the most delicious frozen poolside drinks ever conceived) in hand, discussing which sessions so far have been the most insightful.

There’s a Czech Republic doc here at the conference (we’ll look up his name later because it’s long and unpronouncible) who was talking about the European Myositis Registry (click here):

Me: “You should get on that!”

Mo: “Yeah, but a doctor has to get you on it. I don’t know if Westerman (Mo’s Rheumy) would do it.”

Me: “You are Irish, I’m sure he would. What would he care?”

Mo: “Yeah, looking back on it everything probably started in the early 90’s when I was back there.”

Me: “What do you mean?”

Mo: “When I took time off from work in Ireland. They diagnosed me with chronic fatigue syndrome but it probably was the start of the Myositis. I was off work for a couple months, they put me on prednisone (the steroid he’s on right now, again)”

Me: “What?”

Mo: “The Brothers (Mo’s three brothers Kieran, Dermot, Brendan) asked me if I was going through the same thing as back then when they came out for the wedding but I said nah. I mean, I didn’t have the rash stuff or anything back then…(FYI he doesn’t have a rash this time either!)”

Me: “Are you kidding me with this?! How am I just hearing about this? You never thought to tell me before?”

Seriously. I am gob smacked. Mo left out kinda vital information. Not just to me, but his doctors too. He just never put two and two together until now. Or he never admitted it to me or himself. They say hindsight is 20-20, but damn! that hindsight is awfully useful.

Maybe his being indoors and in Ireland (notoriously NOT a sunny island) saved his skin from showing the tell-tale heliotropic rash. But as we know now, the rash isn’t always present anyway! Maybe the Irish docs in the 90’s wouldn’t have known what the rash looked like anyway (Myositis is rare and there’s not a huge population to draw experience from like here in the U.S.)

Of course it’s all conjecture. We don’t know what would or would’ve happened. But it does change my mind that statins were to blame for his autoimmune disease. Or not. I don’t know.

I don’t know anything anymore!

My mind is blown. *PSHOOSH*!!!

 

caption it

We are enjoying the 2014 TMA Conference, and REALLY enjoying the art here at the Peppermill Resort Reno.

It is awesome. In fact, it’s so awesome we want to share it with you now.

Play along with your own captions, here are some of ours…

image“Wow. Your grocery list sounds exhausting.”

image “You don’t even notice your amputation…” (God, I can’t look away)

image“Geez Mary, I told you that egg salad had been sitting out too long.”

image“Gurl, you look FIERCE!” (The First Drag Mother)

image“Armpit Check! Fresh.”

image “You know what I love most about fall? My boots…”

image“I’ll keep you with me forever, Flufffy” (The First Crazy Cat Lady)

image“That zombie baby is so creepy. Who still wraps their hair like that after a shower?! Gross.”

image “OMG, she’s still talking about her boots. She’s not even wearing them anymore.”

“And get some new socks, Tiffany.” “What is that, a mustache?! Weirdo.”

ice ice baby

Unless you’ve been living under a rock this summer… you undoubtedly know about the ALS Ice Bucket Challenge. Hats off to whoever came up with the concept of the challenge, what a wonderful idea to raise awareness and much needed funds for such a horrible chronic disease!

 Whether you think the idea of dumping ice water on your head for charity is silly or not, you can’t argue with the amount of money raised (over $100M in eight weeks, click here) or the power of the challenge to start a conversation about rare diseases. The funding campaign went viral, and that’s an amazing achievement for such a demographically small and marginalized group of rare disease patients. Most people refer to ALS as Lou Gehrig’s disease – a sad reality that unless someone famous is diagnosed with a disease the public doesn’t recognize it. 

National Myositis Awareness Day is around the corner (September 21) and I wonder if we in Myositis can come up with a similar (yet unique) viral challenge. I realize a lot of other patient organizations will be having the same thought, however, that should not stop us from trying. I challenge you to put on your thinking caps and make Myositis Awareness a global sensation in 2015!

And don’t forget, if you have still to participate in the ALS Ice Bucket Challenge, to mention Myositis as well! You can piggyback our cause with theirs and raise double awareness!!! Check out Mo’s video from last month!