I've been on prednisone for 4 days and I've had NO pain! I feel like I'm 20 yrs old! I only have two days left on this tapering dose...how long can I expect to feel this great? I know it's dangerous for long-term treatment, but I haven't felt this good for so long. I want this to last forever.
In the beginning they had me do a run of prednisone and it did nothing, then after many months I thought I had all the TN attack patterns understood, then at 10.5 months it all changed for the worse. Either I. Was great (around a 3 of 10 pain)b or a dibiltating 9.5, they had me just do another run to attack any innflamation and it has helped a great deal. Of course, the run is over and I proceed very cautiously (anxious) awaiting what will come next…
I have been off and on prednisone for over 20 years. You are having the initial prednisone euphoria. It will wane and increased appetite and possible anger/agressive behavior will ensue. I have found that my tn gets worse with sinus infections and I do get a reprieve from pain while on prednisone, could it be the anti-inflammation properties of pred at work somehow on the trigeminal nerve? Be sure to take your dosage with food, you can get severe heartburn with it, the first time I took it with diet coke and a handful of popcorn, and later had such severe pain I thought I was having a heart attack!
Have a a pain free day,
Mollycule
P.S. I had cataracts early at age 55, was told it was due to my prednisone use!
I have been on Prednisone for 14 months, began with 60mgs a day and have now tapered down to 4.5 mgs a day and I will hopefully be off it in 10 months as I am reducing by .5 a month. This is not for TN but for an autoimmune problem. TN and the autoimmune problem began at the same time, TN meds got the TN1 under control and I have taken the Pred for the rest of the time, I used to worry that once I came off the Pred the TN2 would start again. ( Its now only very mild). So far so good it as not yet returned. Good Luck. ( PS I have not suffered any side effects apart from weight gain) xx
Thank you so much for the info. My dosage was only for a week to clear up the remnants of a bad ear & sinus infection. Tomorrow is my final taper day, and unfortunately the TN symptoms are creeping back in. But it was a great four days! Molly, euphoria is exactly how it felt. Like the TN had never happened.
Is there anything out there that works similarly without the dangers and side effects of prednisone? I heard something about a med called endecort (i'm sure that's misspelled) that people take for other conditions.
I have had some relief after switching from neurontin to effexor at 225mg so far, and klonopin for jaw clenching. Wishing the best for you guys, thanks again for your replies and advice. I count on this shareboard for such generous support and caring ppl like you. Very glad to have found it.
I have heard but dont know if it is true that kept below 5mgs that Pred does not harm you. What dosage were you taking Colleen?
They were 5mg tablets...1st day you take six, 2nd day 5, and so on for a week until they're gone. The next time I experience a bad TN flare up, I will ask the pain mgt doc if it's ok to take the prednisone off and on just to feel as good as I felt this past week. It was the first time since 2008 that I smiled and laughed, chewed and slept without pain.
Its makes you wonder if you stayed on a small amount would it keep the TN at bay? Do ask what the doctors think. I often worry if my TN will come back once I am off mine, I do pray that it doesnt. Let us know how long your pain free life lasts xxx
I would too ask about a low dose -- or maybe a shot moving forward. I think cortizone is related, people get shots of those for other types of relief.
You look 20 in your picture = glad you are feeling it!