August Meeting!

We are SO excited for our next KIT Meeting on August 2nd! Why?

It’s the first time we will have a myositis doctor speak to the group!!!

August 2nd 1PM – 3PM in Room Pine B (Swedish Medical Center, 501 E Hampden Ave.  Englewood, CO  80113)

Todd Levine M.D.                                                                
Peripheral Neuropathy Clinic
5090 N 40th St Ste 250
Phoenix, AZ  85018-2134
602-852-3354
levine865@aol.com

Dr. Levine will be flying in from Arizona just to present to our group! He is on the TMA Medical Advisory Board, a premier group of medical experts and doctors working in the field of myositis care and research (we are talking world-class doctors!!!)

If you are going to come to one meeting this year – this is the one!!!

Click here for the recent live discussion of Achtar with Dr. Levine.

Click here for a paper on Dermatomyositis & Polymyositis by Dr. Levine.

Acthar treatment: week 10. Rituxan treatment: week 4

Well I had my final Rituxan infusion. This time the infusion took 2.5 hours which was not necessarily a good thing. I could still feel the effects of the Benadryl driving home (feeling loopy!) from the hospital . So for now I have to sit back and wait to see if it works on stopping the current DM flare-up.

Friday there was a Live Discussion on the TMA web-site about Rituxan. Click here for the transcript. The main thing I picked up on is that it takes 2-4 months to know if it will work or not. That is mid-July to mid-September in my case.

It is interesting to learn the FDA did not approve Rituxan because the Rituxan In Myositis (RIM) trial is considered a failure even though it helped 87% DM/PM patients. The reason being that there was no difference in the trial between patients who got Rituxan early versus those who got it late.

This makes Cigna’s decision to deny me for Acthar but approve me for Rituxan even more baffling, considering the former is FDA approved for DM. (I’m not arguing as I got both drugs at no cost to me.) Genentech, the manufacturers of Rituxan, did deny me use of their Genentech Rheumatology Co-pay Card Program as DM/PM is not an approved condition it treats. Click here for information on that program.

Two more weeks of Acthar until the end of my injections, which can’t come soon enough. I have pretty much resigned myself to that stuff not working. At least in my case.

Physically it has been another tough week. I had hoped that the weakness I felt last week was due to physical exertion caused by rummaging around the crawl-space and moving in and out storage bins. I’m finding that if I over-exert myself it doesn’t just take it out of me for that day, or the next, but a couple days. I’m drained most of the time.

I feel a lot weaker this week in my arms and legs. I can no longer lift heavy items from the shopping cart (this included not being able to get Conor out of the grocery cart seat!) and stairs are getting harder. Last night my arms and legs were aching in bed for hours even though I had an easy day.

Looking forward to the benefits of Rituxan — *Fingers Crossed* they start soon!

 

Acthar treatment: weeks 8-9. Rituxan treatment: weeks 2-3

Well finally some piece of good news this week, my CPK has dropped from 3,200 to 2,800. Not a great improvement but an improvement I was not expecting all the same. I had the blood work done at the start of June, just after two Rituxan infusions. When I had Rituxan infusions done previously I did not have an improvement until after 4-6 weeks.

The last two weeks were not good physically or mentally.

While I remain fairly optimistic that the current regimen of Acthar and (probably more so) Rituxan will help get me out of this flare-up, I am starting to worry how much longer I have to wait for a turn-around. Thoughts like “What if neither of these medications work and what is Plan C?” are starting to creep in. I think optimism is important in dealing with a chronic illness, but it must also be tempered with realism in the effectiveness of a viable treatment.

I am starting to feel extraordinary weak.

Not just for hours at a time but for days.

The feeling of utter uselessness in functioning as a family member can be overwhelming at times. I don’t think I ever considered myself depressed in dealing with this disease, but I do find myself in a funk lately without the ability to kick-start myself to be more productive.

I realize rest is an important part of bring on Short Term Disability and I am certainly doing more of that lately. The other thing with weakness is losing my dexterity and balance. I am constantly dropping things from my grasp, clattering into objects and even having the odd fall. All of these bring my frustration to a head.

Brain fog and motivation to get things done are becoming more of an issue too. And there is the minor issue of the World Cup starting up which will become a time-suck. I made it out to Genoa, Italy for the 1990 World Cup to watch Ireland beat Romania on penalty kicks. What a great experience that was. Ah yes, brain fog, I am finding my thought process runs in slow motion and difficult to keep focused.

Nicole asked me a few days ago if I missed work. Without hesitation I said no. I love my job, but even thinking about returning to work any time soon is so remote to me right now.

Both Nicole and I through our medical issues have discovered that you find out how many friends you really have when you are down and how few people will check in on you or just call you to see how you are doing.

With the initial onset of dermatomyositis, I did not understand the disease or how long it took me to return to work, very few of our friends understood what I went through. With the current flare-up I did explain to some co-workers what I expect to be going through. I got a lot of “if there is anything I can do…” and “We’ll keep in touch on how you are doing”. I was lamenting on this last week, but this week I had a few friends and co-workers check in by visiting, telephone and email. It is a great pick-me-up to have people check in on you.

As to treatment this week, I had my 2nd and 3rd infusions of Rituxan. This time it went a lot quicker, 4 hours instead of 7. I only needed the first dose of Benadryl and did not have the burning sensation at the IV site I had on the first infusion. I had it done at the main practice location and so was a lot busier with infusion patients. I noticed it last week and more so this week on how disproportionate the gender difference is in auto-immune diseases. I would estimate at least 80% patients coming in getting infusions are female. I have not verified my unscientific statistic online so don’t quote me on it!

Following the infusion I did not have the flushed sensation I had before, so I must be tolerating it better.