These are the stairs from the condo that my family and I stayed in last week for a vacation at the beach. Just a couple of months ago they would have been nearly impossible. But I can officially and so so happily say that this new infusion is WORKING! 🙌🙌Praise Jesus!
Back in December, a few weeks before I was due for my next round of Rituxan being used to treat dermatomyositis (DM), we got a rather large bill when we were under the impression we were only paying a copay.
My husband is the only one who works so you can imagine how difficult it is when we get a surprise medical bill. I fought for months to get some kind of help, and in the end, I got denied for the Rituxan. However, I did get approved for a hardship through my insurance for Privigen (IVIG)! All the while my husband has been working major overtime to save the money in case Rituxan was approved.
I figured “let’s try this IVIG in case it works. It’s free and it just may work.” Plus I knew my niece’s graduation was coming up and I could get through two infusions before going. I have done IVIG before but it didn’t help whatsoever, just gave me headaches so I didn’t go into it with any expectations. I saw a little bit of a difference early on but it wasn’t until our vacation that I truly saw just how much it had worked. I never would have had the energy to get through everything without it, go into the ocean, go up and down those steps or do half the things I had done.
I will never be 100% again, but I feel better aside from a flare up today, and on and off pains. This is nothing compared to what it was. Being told by my doctor that I’m out of options and then finally finding something that works is an absolute blessing. There was a time when I couldn’t even get up from a seated position and I needed help to even use the bathroom. So to be able to use those stairs without assistance was seriously indescribable. 10+ years of different medications, muscle loss and pain. All I can say is, Praise Jesus!
The picture of stairs is so funny and empowering when you’ve experienced Myositis! Every time I make it up a flight of stairs, it’s a miracle and I remember the time when I wasn’t strong enough to even lift my foot high enough to step up onto the step! I’m so happy for you that your treatment is working.
Thank you so much. Unfortunately, I had a set back but it will not stop me from pushing forward. I’m currently doing another week of infusions and I feel it’s already helping some which any little bit helps with how I have been feeling. I was forced to stop methotrexate after 10+ yrs because it was affecting my liver and could affect my ILD and this was when I was getting over being pretty sick so I have been in a rough flare. Hopefully, between switching to cellcept and this weeks of infusions I will feel even better 🤞. Because those stairs would not be possible right now.