the irritation I have felt, but I got more serious about not missing my medication and it has almost completely gone away. I take this as an indication that these medications are important and effective, and that the Medrol (Methylprednisolone) isn’t able to stop all of the symptoms on its own. (At least in my situation)I have really noticed how important it is to be consistent not only in taking the medication every day, but taking it around the same time every day. I suppose that switching up the times I take my medication is similar to how jetlag messes with my body. It seems to me that our bodies adapt best to consistent patterns and rhythms in life.
I have had Sarcoid a little over two years now. My doctor said that the average time it takes to remit Sarcoidosis is two years, but some take much longer. My dad took ten years, but it is looking like me and my sister may be much closer to the average. Perhaps this is because of newer medications and updated treatment. Or possibly it is due to diet and exercise; maybe a different mix of genes (Thanks Mom!) or answers to heart felt prayer. My guess is that it is a little of everything. Whatever the reason is, I am very grateful.
Well, all in all I am really feeling relief and life is almost completely back to normal, or at least as normal as life was before Sarcoidosis. I have a winter camp with my son coming up this month and it promises to be very cold. In the past cold has actually seemed to help how my lungs feel. I’ll let you know how it goes.Michael
Ps. Here is a list of the current medications I am taking:
Morning:
4 mg Medrol (Generic name: Methylprednisolone)
200 mg Plaquenil (Generic name: Hydroxychloroquine Sul)
400 mcg Folic Acid
Evening:
200 mg Plaquenil
750 mg Relafen (Generic name: Nabumetone)
PPs. Hang in there, you’re not alone in this! Remember Sarcoid is beatable!
7 comments:
I have cardiac and pulmonary sarcoidosis, heartfailure and pulmonary hypertension and need to take ten different prescription medications at four different times a day. I have alarms set on my blackberry to remind me because if I miss a dose I really feel it. You are right that missing times is akin to jetlag. Take the time to foloow your regimin on time. Hope you have a fast recovery.
Basil Rene
www.lifewithsarcoidosis.wordpress.com
Wow Basil, 10 medications! It is a good thing you have the blackberry. Setting your phone to remind you is a great idea. I didn't think I would need to do that, but apparently I should.
I hope those medications make the difference. Hang in there Basil, this does get better!
Michael
Ps. Thank s for the blog link.
Hi Mike, thanks for stopping over at my blog.The reason I can run so easily in the winter is because the sarc is not in my lungs or joints.I feel very blessed about this! I'm curious as to why you are taking folic acid while not on methotrexate (I am on both)? Do the other drugs effect FA as well? I am about to add remicaide infusions have you ever tried those?
On a lighter note, I'm glad you are feeling well and I hope you have a wonderful time with your son!
I never know you could have sarcoid and it not be in your lungs. What a great thing!
I haven’t heard of the other medications you mentioned and I can't say why I am on the Folic acid just yet. (I will in a future post) =)
The winter camp is tomorrow. Thanks for the best wishes. I'll let you know how it turns out.
Michael
Hello Mike, I was researching Sarc and found your blog. Awesome to have another Sarcoidosis blogger out there. I am glad to hear that you are doing better and hope your trip with your son was amazing. Enjoy! Dani
Dani,
Thank you for your post. Yes, things turned out really good with my boy. I'm just about to post about it. If you would like add your url to this blog. I would love to visit your page.
Michael
Was diagnosed with Sarcoidosis only a few hours ago--by email. Not sure how I feel about it yet; the diagnosis and the delivery method.
The email said that a script for prednisone would be called in, and he asked that I go to the public health office or some type of urgent care facility, and get a TB test right away.
Why?
I have been sick for three years with no diagnosis. I have episodes of swelling, my body has periodically been covered with bleeding, itchy, pea-sized sores, my lymph nodes (underarm and groin area initially) are swollen and painful.
Last week I was sent for a consultation to another doctor, who ordered me to have surgery the following morning to remove the lymph nodes in my right lingual area. He said the insides were the consistency of cottage cheese.
What does that mean? Remember, I only just got all this information, within seven days, after three years of being hot-potato's from specialist to specialist.
I am reachable at gmail under the name Acoyya; I would be grateful to hear a response, to learn something, anything, about this disease, including good websites. Thank you and here's to good health for us all.....xx Tosh!
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