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.



One thought on “Acthar treatment: weeks 8-9. Rituxan treatment: weeks 2-3

  1. Hello Mo. I am glad to hear that you have some good news regarding the drop in your CPK levels. However, I am sorry that your recovery from this flare is taking so long. I’m sure that this has to be very frustrating for you. I completely understand what you are going through with the weakness, feeling of uselessness, fatigue, dropping things and experiencing falls. It is very difficult to experience this stuff and still keep a positive attitude. You and I are fortunate to have wonderful wives and families to help us through this stuff. I think by expressing our gratitude to them as often as possible, even when in a funk, helps us to get through this. Please know that I am thinking of you as you go through this difficult time. John.

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