Have you ever been prescribed Prednisone for ATN? If so how much did you start on and did you decrease gradually? At what point did you feel your pain again?

I am on a reduction plan now.

I was. Near to when I was first diagnosed about 1 1/2 months ago. (I have TN, possibly moving around now.) I don't remember the dose but yes I was what is called titrate(d) down. Have not used them since for some reason.

You are always supposed to decrease predisone gradually, it could have really bad effects

I was first diagnosed by an ER doctor. At first, he was going to prescribe this. He told me that this is what was used for the pain. But said there was a neurologist who was in the ER for something else and was going to ask him to consult. The neuro came in and examined me, talked to me, said definitely TN, but that prednisone was no longer the "go to" like they had thought. Instead, he prescribed Tegretol with vicodin for the breakthrough pain. Anyway, that is what I was told.

I have used cortocosteroids successfully with ATN. Had had cortef (hydrocortisone, shorter acting than prednisone, though same agent in essence) prescribed for adrenal insufficiency, to be used for physical stress. I chose to count a flare as just that. Lucky grab. My last flare had started with inflammation at the jaw joint, which then set the trigeminal nerve on fire. Worst pain center remained in front of the ear, throbbing, bringing to mind that neurovascular strangulation that can be addressed surgically.

The steroid doused the inflammation, which dialed it all back just enough to be able to hear myself think somewhat and take further measures. The inflammation at that level causes cranial nerve demyelination for me, which brings about broader damage/deficits as quickly as 24 hours after onset - thus cortisone is now my first tool to prevent further nerve damage.

I have an easier time dealing with cortef as opposed to prednisone due to its shorter half life. I can dose in a targeted fashion and get off it faster with fewer adverse effects. I doubt very much this is how anyone would prescribe it though for either TN or MS. They usually want the full saturation, not the diurnal cycle as prescribed for people with adrenal insufficiency. I had been resisting steroid trials at the rheumatologist’s and neurologist’s office before, that would have likely been prednisone.

Reduction-wise, the last few weeks I had only been using it for a day or two per week, whenever things ratcheted up into the deep red zone. This past week I noticed adverse effects and have vowed to lay off until it is a dire emergency. And yes, twinges are making themselves known already. I’m thinking of buffering the transition with lidocaine, which has antiinflammatory effects; my acupuncturist has also stepped up his work. That systemic support is quite solid for helping your adrenals ween off, and they are pretty good at treating pain and inflammation. I’m working out other suitable alternatives, the more the better to pick up the slack from the steroid withdrawal. Happy to discuss more if you are also interested.

Hi Jay thanks for the reply. I was started on 50mgs of Pred per day for the auto immune problem that was over a year ago. I tried to decrease a few times but had flare ups of TN each time I tried to get to around 30mgs. After a few ups and downs I managed with Pred and Amtriptyline to reduce to 5mgs a day of Pred now. I have been on 5mgs for 3 months and go to see my Rheumy in August when hopefully I will begin to reduce again. As my inflammation is under control I am no longer having TN attacks, I am hoping they are linked.

Hi elstep,

You are bound to have medication induced (temporary, until adequately boosted back up) adrenal insufficiency, i.e. once you’re off the steroid, your body will be deficient and you will have a much tougher time bouncing back from any kind of stress and will not be able to control inflammation as well. This is well known in the medical community, though I have not heard anyone suggest anything useful for getting through that better. Come to think of it, I have watched about a half dozen people I know come off prednisone… Any traction on what the autoimmune portion/process is?

I have been informed to do very very slowly. I am expecting to reduce by .5 each month from August. I normally work nights as part of my shift pattern at work, but I am finding the lack of sleep is making me feel ill, so I am going to ask my doctor to give me a letter to give them up. I am not sure if i will find them any easier to cope with once I am off the Pred for good?