The Waiting Game

Although I would LOVE to say that I am back at home catching up on sleep, I am stuck in the ever so familiar holding pattern- the waiting game. Since my last post, I was able to tolerate the final day of of IVIG, which we were hoping would provide enough of a boost to see an improvement in my symptoms, and as always, to decrease the ever-so hated steroids. Each round of IVIG doesn't necessarily make a difference independently, which was true in this scenario. High dose IV steroids have now been building up for almost two weeks, which should mean that we able to decrease the dose slowly- yet, again, my body doesn't seem to be a fan of the agenda.

The IV steroids work. But that's also the problem. Although they help reduce my symptoms, reduce the severity and frequency of reactions, there are countless side and secondary effects that make them dangerous long term. I have already developed osteoporosis from them, and long term use increases the risk for metabolic issues, diabetes, advanced bone degeneration, and a whole host of other issues. 

To try to make up the "gap" that the IV steroids fill, I have been on multiple immunosuppressants for a few years. Now that we know for a fact that my gut absorption is close to nada, we discontinued two of my immunosuppressants. Instead, we have now added Methotrexate, which is another immunosuppressant and chemotherapy medication. Although its technically a chemo, I am on a low dose, and side effects are supposed to be minimal, and primarily related to mouth sores, hair loss, and issues with blood counts. It is an injection that I will receive once a week.

I have received one dose of the new medication, but unfortunately, even if it is helpful (which we have no guarantee of), it can take 3-4 weeks plus to see a difference. In addition, like the other immunosuppressants I have taken, it is "broad spectrum," meaning that it impacts my entire immune system, but may not be specific enough to address the particular autoimmune process that is happening for me. I'm hoping that over time, as that does builds up, and because it is an injection instead of an oral medication, that it can help with the steroid reduction.

So, for now, we wait. I still feel pretty guilty being a "negative Nelly," but reasonably, I'm frustrated. We're all frustrated. The team here has been amazing, and looking into a variety of treatment options, research, etc. We know what's happening, we know the treatment options, but there just isn't a whole lot of targeted therapies that we can try and apply. It is just going to take time for things to mellow out, and to slowly decrease the steroids. Originally, the game plan was to have me out today or tomorrow, but now it is looking like I would be going home later this week if things go ok. I've burned through quite a few coloring and sticker books to avoid going stir crazy from not leaving the unit in more than a week :P There have been some more canine and human visitors which also helps the time go by :)

On the bright side, having nutrition, vitamins and proper electrolyte levels through the TPN has made a major difference, even though I'm not thrilled about going home on it. I am working on trying to eat as much as I can in addition to the TPN to help keep my gut somewhat functional. My electrolytes are finally starting to stabilize, and I'm not having  any more of the weird cardiac episodes. The PICC line in my arm that I am receiving meds through is being finicky, but we are trying to preserve it for as long as possible. I suppose "counting my blessings" is right in this context, that I have the ability to go home with support like TPN so I can avoid living in the hospital. I'm hoping my next post will be one heading home!