Where Are You?

August 25, 2009

Can anyone help me find answers re. side effects of being weaned off of Prednisone? I slowly weaned down from 60 mg to 8 mg. I was on 60mg for 6 months due a lesion in my brain next to hypothalamus and in my spinal cord C6 to T2, which the Docs at Mayo assumed was neurosarcoidosis. Because it was in, they could not biopsy. However ,there were also lesions in my lungs which they did biopsy and it was sarcoid. The lesions did respond to the prednisone.

However, I am so very tired and depressed. I also deal with severe tightness in my leg tendons. which no amount of stretching alleviates, which is probably residual from the lesion in my spinal cord.

I thought I would feel better titrating down on the prednisone, but I sure feel crappy. I realize people out there are dealing with a whole lot worse than I am and my prayers and thoughts remain constantly with you. How do you keep stamina and outlook on life so upbeat? I did well until a month ago, it is like I crashed and I can't pick myself up again.

Can someone enlightened me what's going on? The Docs just say I am depressed-What do you "Wise Ones" who have actually lived some of this stuff say???

Any advice anyone can offer, will be so appreciated........Thank You for all your inspiration. My prayer continue to be with you........... B...(marybauerb@...)

August 25, 2009

,

OK first question are you weaning down due to Sarcoidosis is in remission? Or are you weaning down to go on an alternate Med, like Humria or Remicade?

Now the reason I ask those questions are due to the fact I thought I once was in remission. I weaned down and went off Prednisone for 3 months then I was hit by a flare up that I would not wish on any one. I fell down in such a manner at work that fellow workers thought I had been shot. I blacked my right eye and check and I did not know where and when I was, I did know who I was. I lost the ability to recall at will the last ten years of my memories.

I do have Neurosarcoidosis with lesions 4 around the brain and 5 around the brain stem and Sarcoid was verified by lymph node biopsy. First understand that I have love and hate relationship with Prednisone. I love the fact that it holds my Sarcoidosis in remission, but I hate the ______________ side effects of Prednisone which there are at least 20. Yes you will feel a little tired coming off prednisone. You need to keep an eye on your Blood sugar and Blood Pressure, due to the fact Prednisone may cause problems with both. I have been down to 20 mg for almost the last year, matter a fact a year at the end of this month. I am now Pre-diabetic and have high Blood Pressure both are controllable by diet and cardio . I have a Doc that is trying to get Humria approved by my Insurance so he can take me off Prednisone. He dislikes it and I of course bless and curse it in the same breath.

I guess what I am saying is be careful be aware of how your body is reacting, I have been to one support group meeting in my area so far, and the one thing I have learned is the effects of weaning off prednisone are pretty much different for each person I have discussed it with. Talk to your PCP about the effects you are experiencing. That way they can provide medical support to your weaning. I have been keeping several journals just so I can discuss issues with my doctors, due to the fact that it seems my short term memory has a short circuit, I need something to refer to so I can explain what is happening with me.

Now after going through all of that. Let me say this. May you be blessed with remission and pain-free days, and may enjoy the compassion and joyous love of your friends.

Greg aka Krumdawg