The adjust time I talked about in the last post just never came. I started noticing things going in reverse though I really didn’t want to accept it. I probably let the worsening symptoms going longer than I should have before I talked to the doctor but I was really hoping that my body would adjust. In the end it did, just in the wrong direction.I finally gave in and called the doctor. He told me to increase the Imuran (Azathioprine) by taking two tablets in the morning and then one in the evening. This increases the dose to xxx per day. He also had me going back up 2.5 mgs on the Prednisone so I am back to 7.5 mgs. With the new doses I don’t seem to be getting worse, and the road back to getting where I was seems to be a slow one. I really have a lot of pain in some of the bones of my feet, especially the left one. The strange thing is that it isn’t in the joints like it was in the past, it is in the actual bone. You can see bright red where it hurts, and sometimes it REALLY hurts.
When the medicine messes with me, or when I get frustrated about my weight at times, I often find myself thinking about just going off the drugs and dealing with the pain. Sometimes I wonder if the side effects of the Prednisone aren’t worse than just dealing with the Sarcoid. Then… when the Sarcoidosis flares up and the debilitating pain kicks in to the point of not even being able to walk across the house… that’s when I am reminded of what the drugs are actually doing for me. All that being said though, if Imuran give me cancer… that would not be worth it!
My sister’s test results came back and it turns out that she does have Sarcoid after all! Crazy stuff. That makes three members of my family with Sarcoidosis. They have her on high levels of prednisone and she is going through the ringer. She calls me a lot and it is good to help here through the first phases of this. The high doses of Prednisone really mess with you mentally and I think it is really good for her to be able to talk with someone who has already gone through it. I can commiserate with her and help assure her that what is happening to her is normal and not to worry. That stuff can really make you wired up and mess with your thinking. She is doing well for now and I hope all goes as good for her as I think it has for me.
Some good news though… I have lost about 15 pounds unexpectedly. I’m not sure why, I haven’t eaten any better. Perhaps it is the activities of summer? Don’t know but I’m not complaining. I’m loving that!
4 comments:
Hang in there, Mike. Better times are on the horizon for you and I we can fight sarcoidosis and win. I understand it can take up to two years to get it under control. We've got the time and fortitude.
David McClendon
http://15yearsofmysarcoidlife.blogspot.com/
Thanks David! My dad had it for 10, if I can kick this in 2 I’ll be happy!
Michael
Mike,
I want to say thank you for putting this blog out there for people like me who have just been diagnosed. I have had symptoms for around 3 yrs and they just now found out what it is. About a week ago I went to the ER because I was tired of feeling like I couldn't breathe and having sometimes unbearable back pain and told them to please run all the tests you can and sure enough...Sarcoidosis. In the ct scan report the doctor said it looked like I have a history of Sarcoidosis and I said to him ''I don't even know what that is!'' Needless to say as soon as I got home and got on the Internet, there were my symptoms right in front of me. I have the rash on my ankles,shins, and face, breathlessness, horrible cough since childhood and had worsened over the past 5 years,soreness in my bones(I walk like I am 80 and Im 30!!!) fatigue, weight loss, eye floaters,etc. My pulmonary dr says I have it but it needs to be confirmed with a biopsy...so up until yesterday I couldn't breathe very well and went to my dr and he went ahead and put me on a 3 day Z pack, 40mg predisone for 5 days and advair. I kept trying to tell my pulmonologist that I CANT BREATHE and he just keep telling me to wait till after my test is done!!!! URGHHH!!! As soon as I started the meds...instant relief..felt better than I had in about 3 yrs. The side effects from the prednisone sucks, fast heartbeat, shaky, irratable, and when the med started to wear off, boy did my body feel like a ton of bricks...i hurt from head to toe for about 2hrs until I finally feel asleep. Oh well...at least i can breathe for now and enjoy time with my kids.Like you said we give up one to have another!!! Anyway, take care and again thanks for letting me see into your journey.
Alicia
Alicia,
Thanks for your post. I can totally relate to what you are saying. The floaters, the old man pain, etc. It is amazing how effective the Prednisone is, I only wish it didn’t have so many side effects. Still, it beats the alternative.
When I complained about my breathing to my doctor they put me on Advar as well, but I couldn’t stand the stuff. It wired me up like crazy and made my heart pound like a sledge hammer. I have heard that it has helped others, I hope it works well for you.
I remember when I first found out about this rare disease and I felt very alone. Like you I went home and jumped on the internet and found a LOT of other who have experienced and are experiencing the same thing. One thing is for sure, we are certainly not alone in this. And there is a lot of medical help, so much so that despite what you may hear there is a way to put this into remission.
Hang in there! We can kick this thing. =)
Michael
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