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.Michael
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!
5 comments:
Mike, Congratulations, glad to see things are looking up. Your post caught my eye because you wrote in the beginning about how sarcoid bloggers stop blogging after awhile which was the case with me.
Best regards!
Dave
Thanks for the information. Having been diagnosed with Transverse Myelitis I agree whole-heartedly. I stopped posting TM related on my blog (http://jkavanagh58.wordpress.com) because it became a non-issue. Well until a month ago, and now that they are doing more tests, the Sarcoidosis diagnosis is being explored.
Mike.
Congrats on your new addition. Glad to see all is well with you.
I just stumbled upon your blog and was very interested. Back in March 2011, I was diagnosed with "Cardiac Sarcoidosis". Unlike you and your commentors, the sarcoid attatcked my heart causing "heart block", (the distruction of the hearts conduction system). As a result, I had to have an "ICD", (defibulator), installed. I am, was, a healthy 50 yr old until this attack. This changed my life!
Currently, as most of your followers, I am on Prednisone (20mg), and Methotrexate (18 mg, 6 tabs once per wk), to combate the Sarcoid. Initialy I started taking 75 mg of Prednisone for a period of 4 months before statring Metho.
At first the Metho was horrible! 5weeks of hell...Then I discovered something wonderful. H2o! Yes water. After breakfast I take my meds, sit in front of the tv and do nothing but dirnk water all day. No side affects at all. I have an appitite, no chills, no upset stomach and best of all, energy. I don't know if this will work for all, but you must get the word out. I do believe that water is the key. I drink 3-4 gal. the day I take my Metho. It works for me.
Spread the word
Dan
Congratulations on number seven. It's a lucky number. Glad things are looking up for you. You are right that sarcoid bloggers stop or slow down after a while. I think no matter how one tries, there is no positive spin to put on the disease, so constantly writing about it tends to keep the negative side going. For that reason I have changed my blog to "My Life and Sarcoidosis", so that I can put a more positive spin on things. Again, good luck and enjoy your new addition.
Great blog Mike. I was diagnosed with Sarcoidosis this past summer after developing eye issues. The sarc showed up on a lung x-ray when I was being checked for another potential problem. My doctor and opthamologist knew I had a systemic disease but didn't know what it was. I will be off the Prednisone (after 24 weeks) this coming Monday. The results of my CT scan will be revealed on Tuesday when I see the Internist. Don't know what's in store for me after that. Now it's a matter of trying to learn everything I can about it on my own.
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