Finally.

5 04 2012

Today I am ecstatic.

Over the past few weeks I’ve noticed that my energy level seems better, which tells us the Tysabri is finally kicking in. And now I have the official ok to start tapering my Prednisone over the next three weeks.

As long as everything goes according to plan, three weeks from now I will be completely off the Prednisone, which is more than glorious. I will be free of the crazy side effects and able to just feel like me again.

Thank you again for all your prayers, and keep them coming! Tapering Prednisone is always when the flares have kicked in in the past and I’m hoping to just avoid that this time. If this works, I will sing the praises of Tysabri. For real.

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Doctors

8 11 2011

Well.

The doctor appointment went exactly as I expected. Which is to say not good news.

My doctor is at a loss. The current treatment is clearly not working and my available options are slim. Even if I were to go on Tysabri at this point, the chance that it will work is only 50%. And that’s my best option.

My doctor basically told me I need to go back to Mayo Clinic or the University of Chicago and look into medical trials. We need to start doing research to figure out what will happen next.

The other thing she brought up which I may think about a few years from now is a stem cell transplant. That means they would either harvest my own stem cells or someone else’s and completely knock out my immune system, then reintroduce it via stem cells. It’s not widely done, but the hospital I go to uses it with decent results. The problem here is that my disease shows a strong genetic component, so reintroducing my own stem cells may not be as effective as using someone else’s, and there’s less research on that at this point. In the future, that might be something I’d look into. We’d like to wait awhile until research there comes together, and it would be an awful process using like, chemotherapy and radiation, but if it worked it might be worth it. We’ll see.

Right now I’m stuck on steroids and working on getting an appointment with the University of Chicago to discuss trial medications. I’ve also got to call Mayo Clinic this afternoon to see if there is a possible appointment availability while I’m on Thanksgiving or Christmas break. Not how I’d like to spend my vacation, but I’m lucky to have those days off in the first place so I might as well use them wisely.

This appointment sucked. It sucked because it confirms all of our worries. It sucks because the doctor that I really like is basically telling us that she doesn’t have much to offer me. It sucks because I’m 24 years old and my parents are devastated and I have a whole life ahead of me with not many possibilities in sight.

But there are still things in the works. There is still research being done and there are still options for me. Even if everything in my life fell apart right now, I’ve had more than my share of blessings. I am loved and I love people. I have a job that fills up my heart. I have faith.

As we were leaving I kept thinking, “I can do all things through Christ who strengthens me.” I’m bad at memorizing Bible verses and I had to look this one up to see where it was (Philippians 4:13 in case you were wondering), but I do know that although this is difficult and awful and although I see how hard it is on my family to watch me go through this, although all these horrible things happen, I can handle it. I am tough enough. Through God I am tough enough. With that knowledge I can face every challenge. And I am thankful for that more than anything else.





101.3

29 10 2011

I was hoping to update today saying that I woke up without a fever and I’m miraculously better. Unfortunately, not so much.

Instead, I woke up with a fever of 101.3. Then I had to take tylenol and get to work.

My family and I have been having serious conversations. My mom wants me to go back to Mayo Clinic and get checked out there. My parents both want me to get back on prednisone, and my mom wants me to be on IV steroids.

My doctor wants to see if the Cimzia can turn me around this weekend. If it doesn’t, we have to start thinking about backup plans. This, as I’ve said before, is a pretty scary thing.

Here’s a lesson for all of you. It’s so important to be aware of your medication’s side effects and to be an advocate for yourself. In that vein, we’ve researched the other medication that doctors keep bringing up, Tysabri. Here’s a link to the important safety information. A brain infection that has no treatment or cure? Um, not ok. Also, a greater risk the longer you are on the medication as well as a greater risk if you have been on immunosuppressants in the past (which all my medications are) means that no matter what doctors say to sugar coat it, the risk is serious.

Have you ever seen Joe vs the Volcano? Super amazing movie that nobody has heard of. Joe is diagnosed with a “brain cloud” and has six months to live. It has no symptoms. We call this brain infection that Tysabri has a brain cloud, although it really isn’t as funny.

So as a patient, it’s my job to tell doctors that I’m uncomfortable with this treatment. It’s my job to do the research and find all the information I can. Could this medicine really help me? Yeah, it could. But the risk, although mathematically small, is too much for me.

When I thought I was allergic to rubbing alcohol, even the allergists I saw told me that it was “impossible, because it was too rare.” First of all, that doesn’t make sense. Rare=impossible? So I researched medical journals. No, not google, webmd, or wikipedia. Then I was able to take that information with me to doctors and finally get the consideration I needed.

My medical life is in limbo right now. I don’t know what we’ll do next, if I’ll wake up tomorrow feeling wonderful or if we’ll be back at Mayo Clinic before Christmas. But I do know that I’ve done everything I can to be well, including being an advocate for myself. I am so tired of hearing people who don’t find a doctor that does a good job because they are afraid to try. I’ve shopped around for doctors until I found one that I love. Don’t settle when it comes to your health.