Anyone using Steriods to control inflammation?

I have a 5mm Chiari, with alot of symptoms. I've been seen by the best and passed around by the rest! I have myoclonic seizures, spasms, and twitches (over 500 a day!). Trouble with my gait, lose of smell, blurred vision, head pain, exshaustion, memory problems... and the list goes on.
The one thing that seems to keep everything under control is predinsone (I also have Lupus and EDS) I'm at 35mgs a day right now, and that makes almost all of the symptoms go away.
THe problem is steriods are very dangerous long term (I'm 14 years into this). THe Lupus dr. thinks it's Neuro. THe Neuro dr. thinks it's Lupus, and the Chiari dr. (at the Chiari center in NY) think it's Chiari. Last time I saw them (2006) they thought ************** was the best as long as the steriods are working.
Has anyone else used steriods to control symptoms?

[youngwife]

My daughter's neurosurgeon, Dr. Michael Rosner in NC, has used steroids for her during certain flare ups, and after surgery; but she is not on them long term.  She suffers from low cortisol, so sometimes they are just necessary.  But, I would not be comfortable with her using them long term unless *absolutely* necessary.

I don't know that I've been very helpful, but I hope you find answers to your questions.

May God Bless,
Rebecca

[rozia]

remembe r  you cant be on them for a long period of time so you will have to find something else to replace it . Maybe Lyrica , Neurontion

[docsiv]

I take nerontin, and 3 anti seizure meds. This is my last hope. The difference it makes is remarkable. I turn from being a seizing spasming ball of flesh on the couch, to a almost normal functioning human. We want to try things like Remacade, but insurance won't cover it for lupus or Chiari. It's about $2000 a month. I've taken Imran, metheltrexate, but both of these destroy my stomach.
I know the long term effects of steriod use, I decided a long time ago, that I'd rather have 100 good days, than 1000 days of feeling like ****.
The steriods are just starting (after 14 years) to leave it's mark. Wonderful things like grown fur on the side of my face like a baby Wookie.  Or the way my face has turned into a penauta (? the thing you hit with a stick). To osteoprosis, thin skin, spontanious bruising from vessle just exploding. One thing I don't get is infections, because my immune system is still over functioning even at 35mgs a day. And I really haven't gain that much weight over the years. When I started I weighed about 90lbs. Now, I'm 126. Which is just about right for my height (5'). I now have a little cushing for the bones.
I keep hearing " you can't stay on them, you have to find something else." I would love to find that "something else".
But even with all of that, being on steriods is still worth it for me.

[hbos0527]

Hi I saw this post and wanted to respond because it is very similar to mine.  I also have lupus and have been on steroids for over 2 years now.  I have been trying to get off the steroids but have a "flair" everytime I decrease my dosage.  I have had headaches and neck pain for several years also that comes and goes depending on the steroid dosage.  I recently had an MRI of my neck and I have herniation at c5-6 and c6-7 and a small syringomyelia.  MRI report said tonsillar ectopia withOUT chiari malformation.  I saw a neurosurgeon 2 weeks ago and he said my pain was from the hernations and inflammation when I decrease steroids and the syrinx is congenital and an incidental finding.  I'm not sure what my next step is.  I will continue to slowly lower my dose of steroids but the neck pain and headaches are getting worse. ( I also have twitches, blurred vision, memory loss, difficulty finding words.)

[selmaS]

Hi....get copies of ur MRI study as well as the report...u need to find a chiari specialist....the drs that gave u that mis information r apparently not specialists in chiari.
tonsillar ectopia is chiari....and u have a syrinx....with ur symptoms I suggest u find a chiari dr...we have a thread here for chiari specialists...please review to see if there is one near u....research the dr to insure that he/she is infact a chiari specialist, and u r comfortable with him/her.

I hope u continue to post here...it is a great place for info and support!

Godspeed
"selma"

[edeneyes80]

Hi,

I also get the seizures and twitches. But the cracker jack box NS I have now doesn't seem to think that they are related to my Chiari?! Is that why you get them, because of the Chiari?
I do take steroids but ONLY when I get a bad flare up from my fibromyalgia or when I get the really bad pressure headaches. It does help alot, but like you said the long term affects are not worth me taking them continuously.  
Does anyone here go into seizures when they drink alcohol? The past few times I have had a few drinks, I go into a neuro seizure where my whole right side goes numb, my eye twitches really bad and some of the time I am unconscious.  The rest of the time I can hear, but I can't speak, I can't move, I can't control any part of my body, it's like I'm paralyzed. Can anyone relate? The dr's first told me I was having a mini stroke, but since the first one the only permanent damage that I have is my right eye is now noticeably smaller than my left. So now there not sure if it's seizures or mini strokes.
Sorry I went off the subject a little, but yes you should try Neurontin or Lyrica to help with the flare ups too. I've been on it for several months now and it does help me a lot! I use to get really bad pain in my muscles when I would scratch an itch. and it would burn so bad, that dosen't happen so much anymore. My back gets flared up if I lift anything over 5 pounds and it hasn't so much since I've been on the Neurontin. So maybe give it a try?

Tricia

[th1amigo]

Rule out Th1 inflammatory disease. Get your D-metabolite blood levels properly tested. There lies the answer to your problems.