Eyes, Medications, and Thankfulness

Hello all,

A few of you have asked for an update on what's been going on with my health stuff, so here's the latest:

As far as my eye goes, things are looking good. I was back at the eye doctor last Friday (I'll be very glad when I'm done driving there every Friday after work!), and my inflammation continues to decrease. There is still some inflammation present (and a slight blurriness in that eye), but it's definitely responding to the steroid drops, which is great. I'm down to using them just once a day now. He said my case was pretty severe, so he's being very slow in tapering off the steroids, but hopefully I'll be done in about two weeks. And after that I'll just be keeping a very careful watch on my eyes from now on.

I met with another rheumatologist in the same practice last Monday for a second opinion, which was very helpful. The PA he works with was wonderful, and between the two of them I got a comprehensive re-exam and an opportunity to talk through the whole thing from another perspective. This doctor affirmed my original diagnosis (no doubt on that one) and agreed with Dr. Pasha (my rheumatologist) that my increased symptoms, particularly the iritis, indicate that more aggressive treatment is necessary at this point. The one point that he seemed to diverge from Dr. Pasha on was methotrexate (the drug Dr. Pasha is pushing and thinks insurance will require I take, the one I really really don't want to be on). When I explained my reasons for not wanting to use this drug, he agreed with me and said that if he was in my position, he wouldn't take it either because of the risks. So, it was nice to have some affirmation of our decision about this, and he didn't think that this would be the issue with insurance. That part was a relief. It was a great appointment, and I really got to talk out some of the stuff I've been reading about with someone who really listened. The bad news is that this practice does not allow you to switch doctors, so I won't be able to continue seeing this doctor in the long term. (Serious bummer.) I could go look for a doctor in another practice, but at this point, I don't think it's a good time to "start over" with a new doctor, so I'm going to stick with Dr. Pasha for now.

Unfortunately, we did find out that my health insurance did deny coverage for Humira, the drug we want to use. However, Dr. Pasha is writing an appeal for me, so it's possible that may change.  The PA I saw said that insurance almost always denies Humira at first, because it's so expensive, but that often they will approve it if you persist. Fortunately, the insurance is not saying I need to try methotrexate first, but that I need to try a different (less-expensive) biologic first - Enbrel. So, worst case scenario is that I try Enbrel first, for a period of maybe 3-6 months. It's something I'm willing to do (has a similar safety profile to Humira), and both doctors say it's not as good as Humira but could still have good results for me. On the other hand, it has not been studied for iritis, so we have strong evidence to explain to the insurance company why Humira is the right option for me. Right now I'm just in the "wait and see" phase, but I'm hoping to find out in the next week what we're going to be able to do. I've already done all the screenings you need before starting a biologic (TB tests and tons of blood work to check for other existing infections or various other problems), so once we figure out the insurance thing, I'll hopefully be able to get started pretty quickly. Glad I'm not afraid of needles! (I promise not to make you watch, Dad.)

Other than that, things are good. I'm very relieved that I'm not going to have to take methotrexate, so that's a huge weight off my shoulders. I've had some bad days in the last couple of weeks, but I've had some good ones too, and overall, I'm feeling at peace with the whole thing. I'm still doing my crazy no-starch diet (which is just as unpleasant as I thought it would be), but not noticing any difference at this point. I'm going to give it a bit more time before I throw in the towel.

My husband is wonderful, wonderful, wonderful. I am so blessed to be married to a man who will wake up in the middle of the night and massage my back and distract me for hours at a time, even when he's totally exhausted. And my kids are sweet and understanding and compassionate, and I have amazing parents and in-laws and siblings and moms groups and friends and coworkers and faith communities. Sometimes life is hard, but it's also very very good.

I am using this song as a prayer every morning when I wake up:

In the Lord I'll be ever thankful

In the Lord I will rejoice

Look to God, do not be afraid

Lift up your voices, the Lord is near

Lift up your voices, the Lord is near

That pretty much sums it up for me.

Love to you all,

Next Steps

Hello all,

Here's the latest update. This is pretty detailed because there are some people on this list (Mom and Dad...) that want to know all this stuff, and it helps not to have to explain it over and over. Sorry if it's more detail than is necessary for you. Feel free to skim or ignore. :)

I went back to the eye doctor again yesterday, and things are still improving. I do still have significant inflammation, but it's better than last visit, and as long as the inflammation continues to decrease, that's fine. In some ways, I'm glad to hear that I still have inflammation present, because my vision in that eye is still somewhat blurry. So, if that inflammation had completely cleared, that blurriness would be permanent damage. As it is, my vision could still clear up as the inflammation leaves. But really, where I'm at now is not a big deal. I can see just fine and barely notice the blurriness.I don't have any pain or light sensitivity anymore. I just have to make sure to take good care of my other eye. :)   While there is a limit to how long it's safe to use the steroids in my eyes, I still have some time before I get to that point, and hopefully it will all be cleared up by then. I'll be back to the eye doctor again next week.

As for the rest, I had an appointment with my rheumatologist on Friday, which had some positives and negatives. Starting with the good: I have not lost any range of motion in my back, neck, or anywhere else, which is a very good thing. The labs I have to do to keep an eye on various possible complications of the NSAID I'm on right now all came out fine, so no problems there. 

The pain in my heels is plantar fasciitis, which is what I thought. It's actually a pretty common problem, usually from overuse or injury, but in my case it's just another place where my immune system seems to be going nuts and attacking all sorts of things it has no business attacking.  For me, the heel pain is really problematic, because the way to relieve that is to stay off my feet. But spending too much time laying around and not being active is bad for my other joints, so I'm kind-of in a pickle with dealing with this one.

I continue to read and research a lot, so I knew going into this appointment that the iritis and heel pain were not good signs. However, it was still a bit hard to hear from my rheumatologist, who treats lots of people with AS, that he is surprised and concerned with the quick progress of my disease. Unfortunately, I seem to be in the group of folks who have a more aggressive course of disease, which is not great for the long-term prognosis. 

I went into this appointment having decided that I would go ahead and begin a TNF-blocker (mostly likely Humira or Remicade) if my doctor recommended it. Mike and I have been thinking and praying about it a lot, and what I finally came to was looking at this through the lens of service. I believe I have a particular vocation, in my family, my church, and my world, and I want to be able to live this vocation well. If these drugs are what I need to be able to continue serving my family and my church and all the other people God has put in my life, then that's what I want to do. I take the side effects and risks seriously, but they are all "things that might happen," while the stuff I am dealing with right now is "things that definitely are happening." I know the way that my symptoms are affecting me as a wife, mother, friend, and minister of the church right now, and it's not something I am willing to let continue if I have another option.

Unfortunately, there's a possible hitch in this plan. My doctor informed me that it's unlikely that our insurance will approve paying for a (very expensive) biologic, when I have not yet tried methotrexate, which is a less expensive drug that's a step up from the NSAID I'm taking now. Methotrexate is a drug that I really really do not want to take because of some of the serious risks involved. So, we are left with a bit of a conundrum. We can still go ahead and submit for insurance approval for a biologic, but if I am rejected, we'll have to really discern what to do next. 

Also, I'm trying a crazy diet that has shown some success with limiting the inflammation in AS, in one doctor's research plus lots of anecdotal evidence (Hey, if some guy on the internet says it, it must be true!). It's based on one theory of the disease which says that AS folks have a particular microbe (Klebsiella) in their gut, which their body has decided to attack, causing the overblown immune response leading to all this inflammation. So, the theory goes, if you starve this microbe, it stops multiplying and your immune response calms down. Anyway, it's a strict no starch diet, which basically means no grain of any kind, no dairy, no sugar, no beans and no starchy fruit or vegetables like potatoes, bananas, etc. (It's actually quite complicated, because all sorts of things have starch that you wouldn't expect, but that's the basics.) So, pretty much just fruits, vegetables, meats and eggs. It's pretty much the opposite of what this carb-loving, sugar-craving, mostly vegetarian woman would like to eat. And I'm skeptical, but also desperate, so I figure it's worth a try. :)

Thank you to everyone who has been praying for me. If you want to be specific, on the practical side of things, please pray that insurance approves the drugs without a hassle. And on the emotional/spiritual end, that I will be able to see God clearly through all of this. He's teaching me a lot right now, and I want to make sure I'm open to His voice.

Anyway, that's the latest. I am meeting with another doctor next Monday for a second opinion, and then we'll decide where to go from here. I'll keep you posted.

Love,

Sara