5 months of treatment, this is where I am

It has been quite a few weeks since I made a Blog entry, so it is about time I gave an update!

Well July and August has been a mixed bag. All my medical appointments are going well but my recovery is going slower than I had hoped.

My CPK for the start of August was 1,200. That is the lowest it has been since the start of January this year and a lot better than the July which was at 3,300.

The other good news I received this week is my CAT scan came back all clear. I had one done of my upper chest and organs on Tuesday. Dermatomyositis does have a much higher incidence of cancer than other forms of myositis and the general population. In addition I have been on Azathioprine (Imuran) for the last seven years which increases the risk. Finally I have some family history of cancer. As you can image I was relieved to hear the all clear.

I have been on high doses of Prednisone for a month now and I am in the window where I should know if the Rituxan infusions I did in May and June are working.

After about two weeks on Prednisone, I did get a good boost in strength and mobility. There was a Live Discussion on the TMA web-site recently on this drug. Click here to read that.

In addition to the positive attributes of the steroids, I am also experiencing its wonderful side-effects.

Rocket Moon

My moon-face has started in earnest. As have my insomnia, this despite taking all of it first thing in the morning. I am certainly getting more irritable as Nicole can attest to! I have lots of spells of fatigue but still cannot sleep for any length.

I saw my ophthalmologist this week. The retinal tears repairs to my right eye look good. My prescription has not changed since my last check-up and the pain I am experiencing in my eyes is just down to dry-eyes, which is not uncommon in a dry climate like Colorado. He did see the start of cataracts which I was aware of. Again I do have some family history here and something I will have to watch now that I am back on Prednisone which can exasperate cataracts.

However the last two weeks I feel I have plateaued again. It is hard to say as I am trying to be more active. Yesterday I had a bit of a scare going upstairs. My left quadriceps completely gave out and down goes Mo. It is still sore today and I am back using the quad-cane. Getting up from the ground is harder of late.

The other concern is that my Short Term Disability runs out the start of October. That is when I return to work. Although I have the ability to go on Long Term Disability through my employer, it is not something I want to do. My family would lose their medical insurance and would have to purchase the same benefit through COBRA which would add considerable expense to our family budget. Click here for information on the Consolidated Omnibus Budget Reconciliation Act (COBRA).

Finally a shout out to my great friend and work-mate Mike Gibson for wearing our newly designed Myositis Awareness shirt during the annual Gaithersburg Stress Test. Once a year Visa sends a team to an IBM facility in Gaithersburg, Maryland to stress-test various hardware and software computer configurations to ensure the Visa systems can handle expected volume for years to come. Last year I was part of the team. This year Mike ensured my fight with myositis is remembered.

Stress Test


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