Sunday, November 24, 2013

The calm after the storm

I just got back from a vacation with my lovely wife celebrating our 20th anniversary. We went on a Caribbean cruise for a week and the trip was nothing short of amazing. We swam with dolphins, being pushed along on a buggy board and pulled along by holding their fins. We ATV’ed through the rain forests of Roatan and then swam with a massive turtle who let us play and ever ride her. (Amazingly gentle creatures) We walked among the ruins of Tulum of the ancient Mayans and played in the glass like ocean waters so calm that you could float in them like swimming pools and sand so soft it felt like walking on powdered sugar. We cursed on a ship so large that it had 13 floors and is longer than three football fields.

I walked the stairs, played basketball, strolled the decks and watched flying fish sail away from the bow of the ship for astonishingly long distances. I walked the ruins, the beaches and the cities. I watched the shows, laughed at the jokes and soaked in the hot tubs. I ATV’ed, danced, and even did a charity walkathon for the make a wish foundation, and in all that time I never hurt. I didn’t even think of Sarcoidosis… other taking my pills morning and night, I never thought of it.

I started this blog not knowing what to expect. I didn’t know if I would suffer with Sarcoidosis all of my life, or if it would cripple my ankles, or if I would be forever fat because of the medicine. And through a lot of work, and finding the RIGHT doctors and the RIGHT medicine I have now entered a stage where Sarcoidosis doesn’t really affect my daily life. I have even lost a significant amount of weight!

If I knew back then where I would be now I would have had much more courage. I still hope to come off the medication all together in time, and know that I can, but for now… Life is wonderful again.

If you are suffering from Sarcoidosis, you hang in there. Don’t give up. Fight and push and keep looking for the answer. Work at finding a Doctor who will listen to you. If a medicine isn’t helping you progress, tell them and work to find better ones for you. Be willing to go through the roller-coaster of switching drugs and doses. Never give up, never stop fighting! Partner with your doctors, they have the knowledge and you have the experience with your body. Together you can figure it out!
I don’t that this will work for you, but I wanted to list what has been very effective for me. I am currently taking:

Imuran (Azathioprine) 100 mg twice per day (This is doing the heavy lifting)

Medrol (Methylprednisolone) 4mg twice per day (Much, Much fewer side effects than prednisone for me)

Prilosec (Omeprazole) 20mg twice per day (For heartburn that the pills can cause)

What an amazing difference this has been for me. You should know that I slowly stepped down on my drugs over a large amount of time. I plan to continue to do so after the first of the year. I want to reach the minimum dose possible or, hopefully, none at all. (Remission)

What a journey this has been and it isn’t over yet. I expect there may be more ups and downs in the future, but I am constantly amazed at how far I have come and how much better my daily life is.


Ps. My sister is doing VERY well also.

Sunday, July 10, 2011

Exciting News!

Have you ever wondered why Sarcoid blogs stop getting posts after a while? I think it is because life gets busy and dealing with the sarcoid becomes second hand. I think it may also be because people get better and the stop thinking about it all the time. For me both are true.

Since my last post things have really changed for me. If you remember back in the fall I stopped taking Imuran for an “undisclosed” reason. That reason was to get the medication out of my system so that my amazing wife and I could have a baby! Believe it or not number seven is on the way. Yes, you heard me right, number seven. We are very excited. I have three boys and three girls so there was a lot of anticipation to see if the boys or girls would win the numbers game. Turns out the girls made a come from behind victory… it’s a girl! We are all very excited, especially because this is our last. For those of you who think we are nuts to have seven kids, you’re probably right, but I’ll tell you… our lives are very full and all in the best ways.

I did fairly well off of the Imuran with a few bumps in the road. I switched off of the Prednisone to Medrol (methylprednisolone). It is about the same thing, it just works in a slightly different way at a different dose. It has actually worked very well for me and I have been stepping down on the dosage. I got down to 2 mgs before I had a flair up (recently) and am getting that back under control with a bump up to 8 mgs and step back down to 3 mgs. I figured that I will probably get back on the Imuran now that we have the baby on the way. With any luck I will be off the Medrol by winter. Here’s hoping.

I talked to my pulmonologist (Lung doctor) about sarcoid in more depth. I notice that when I have flair ups it is often in my lungs and then some random place on my legs. I asked him if it was possible to get these in dangerous locations such as my liver, brain, etc. He told me that it was possible and he had a friend that died in his 30’s because he had sarcoid and didn’t treat it. For some time I have been debating if I should just stop taking the medications and deal with the sarcoid because I hate some of the side effects… I guess this answers that question. I have a lot to stick around for.

Speaking of which, I went on two hikes with my daughter this spring and summer. It was really great to get back into the mountains and smell the fresh air. I love the mountains and my daughter and I had an amazing time. Nothing like memory building, looking forward to more.


Oh, just in case anyone is keeping track, I am currently on 200 mgs of Plaquenil (2 x daily), Prilosec 20 mgs (2x daily), and Medrol 3 mgs daily. The Prilosec stops the… uh… digestive issues that Medrol causes me. Works great!