Wednesday, February 4, 2015

Beth's Rheumatology Appt. & prayer request

We went to Beth's rheumatology appointment today and they confirmed her arthritis is out of control, with her right wrist affected now as well (both knees, left ankle, right wrist). The right wrist has a small nodule on it, which happens with rheumatoid arthritis (RA).

So, they have to put her on another drug to protect her joints from serious damage. The methotrexate (low-dose of a chemo drug to suppress immune system) doesn't seem to be working anymore, which she's been on for over 2 years. Nevertheless, she still has to take that as well as naproxen twice a day, along with the new drug.

I have been researching the several choices for her new added drug, which will come from a class of RA drugs called biologics. They are made from biological material and have an effect on the factor in our systems that leads to inflammation. They are immuno-suppressants, like the methotrexate. People can die from infections when they are on them, but this doesn't often happen, and would depend on prompt care, too. They can also get very serious but not life threatening infections. There is a black box warning for an increased risk of cancers, especially lymphoma.

One choice I have, used since 1999, carries the cancer risk, as well as risk of MS, which an aunt and cousin of mine are afflicted with--the aunt having already passed away, but her daughter has a very aggressive case of it. 

Or, I could choose one of the newer biologics used since 2008, with so far a lesser risk for cancer, but fewer years of study, so in that case I would be dealing with a greater unknown. Also, because RA is an autoimmune disease, sufferers have a higher risk for cancer anyway. 

In the past, before the biologic drugs were available, many children ended up in wheel chairs because their RA was so poorly controlled. The long-term prognosis is much better for these kids all around, but boy, these are hard decisions.

I haven't made a decision yet about which drug, but she has her first appointment next week, and I need to decide, or cancel and wait longer to decide (they didn't actually give me that choice, but I will take it if necessary). Please pray for wisdom and peace? Beth will go once a month to the children's hospital to be injected with the new med, via IV (after going every two weeks for the first two doses). There is an infusion center there for kids who need chemo drugs, etc. They treat the kids specially by giving them snacks, movies, games, etc. while they wait for their IV bottle to empty (about 90 minutes for the newer choice, and 5 hours for the older choice--the one used since 1999). For a couple days after each infusion she might feel tired, and there are other flu-like symptoms she might notice for a couple days.

My husband hates all things medical and doesn't like to be involved in these decisions. It makes him angry to have to think about the ways Beth is affected by her disease. I think the anger response is not unusual in some men.

I have to be careful to preserve her fertility the best I can with the knowledge out there, and with newer drugs that is harder to do, but her doctor said there have been no fertility impairments known so far with the drug used since 1999, which carries the cancer and MS risk.

Your prayers would be much appreciated. I know God has a plan for Beth's life, and whatever decision I make he will work with, but this still feels heavy. Pray for the best choice? Thank you!


Anonymous said...

You certainly have your hands full. I will add this to my prayers for you and your family. Poor little mite. So glad she has a mummy like you!
Sandy x

Terri H said...

Oh sweet girl. :( I'm so sorry.

Lisa said...

So sorry the metho isn't working. Praying for wisdom for you and doctors as to which med to try. And praying for your little sweetie, too.
Love and hugs to you, dear friend.

Margie said...

Saying some prayers for Miss Beth. My MIL has taken a biologic medication for her rheumatoid arthritis for several years now and has had some good results. I can't remember which medication she takes. I know there must be different concerns since Miss Beth is so young, but it may be comforting that this kind of medication does work. Take care and praying for you all!

Christine said...

Thank you all so much for your prayers, which we really appreciate. Thank you, Margie, for giving a good report about the biologics. It seems medicines work for 2 to 4 years and then the body acclimates and they stop working. As I researched, this is what I found and what we found with the methotrexate. I just hope this one works and that God answers our prayers to have her grow out of this no later than 8 and a half. Fifty percent of children grow out of it either before puberty, around 8 or 9, or in their teens. She has an aggressive case and it wouldn't be good if it continues into adulthood. I shudder to think of that!