[AynaDee]

Hey everyone!

I just finished my prednisone yesterday! YAY! I still am experiencing roid rage tho which sucks, and Im confused because I believe that I am still in this flare. I do NOT want to do solumedral as I have already had a 3day and 5 day and I am trying to save those because I hear they only work a few times. I know if I call my neuro back and tell him what's going on, that is what he is going to do. Same thing happened last time and I was on Prednisone pills then when those didnt work I had to do a 5day IV and taper two weeks of prednisone.

So I still am randomly getting the sand bag affect on my right side.
-electrical shocks on the right side of my brain.
-my coordination/depth perception is way off. (thought the fork was a good 4 inches away but really I was stabbing my face with the fork)
-I keep getting really hot and sweating profusely(prolly prednisone?)
-my back muscle spasms are now occurring during the day too instead of just my sleep.
-there are several more stupid symptoms I am experiencing. I can deal with what I have to, I guess my question is..

Is it possible to come out of a flare without medicine? Or is this something that I am just going to have to get over and get back on solumedral?

I know when you are in a flare permanent damage is being done, but I also feel that all these steroids are damaging me as well.

ugh Im so confused.

-Ana D

[Erin524]

the steroids dont work immediately.

When I did oral steroids back in 2007, I didnt notice improvement until a week after I finished the oral pred. (had the oral pred because I had bad vertigo that kept sneaking up on me and knocking me to the floor)

I had IVSM last summer for double vision, that didnt help immediately either...took several weeks to notice improvement.

Also had oral pred last fall that did nothing, and IVSM and an oral pred taper earlier this May for near full body numbness, problems with moving my right side, vertigo and the worst spasticity that I've ever had. I'm still numb, still get the dizzies, but the spasticity has improved. I dont know if the 'roids I took for that helped or not, since I still dont feel good. Only thing that got better was the spasticity. I'm not popping baclofen like Tic-Tacs anymore. (at least not this week...the spasticity comes and goes)

[AynaDee]

Thanks for the response Erin!

So I should give it about another week to see if the roids kick in huh?

So are symptoms that improve coming out of a flare, but are still present almost everyday, just the sign of what permanent was done from the flare?

They said if I am still experiencing the back muscle stiffness/soreness a week after the prednisone that I would have to be put on an anti-spasmatic (which I am trying to avoid I DO NOT like prescription drugs AT ALL).

I really hope my body can get itself back in check cuz I feel like

A. This disease is literally eating me alive
B. I am a danger to my own self. (per my coordination being so jacked up)
C. I am falling apart! lol

Thanks for your response!

[Erin524]

Just give it some time. Sometimes improvements happen gradually.

I dont like taking medicines either, but I love the baclofen (an antispasmodic) that I take for my spasticity. Much better to swallow a couple of baclofens than having the MS make my legs try to kick me in the butt while I'm sleeping.

I'm still waiting to see if my latest flare is going to let up and leave me alone for a few months.

[AynaDee]

I believe baclofen is what they plan on putting me on if need be it...

sooooo

is baclofen something I can take before I go to bed if I have been really active that day and know my muscles are going to turn on when they should be turned off for the night? and when my back gets really stiff and uncomfortable would I just be able to pop the pill to ease my muscles?

or is it one of those drugs that I have to take everyday regardless if I am in pain or not?

thanks!

[coffeegirl]

A. This disease is literally eating me alive
B. I am a danger to my own self. (per my coordination being so jacked up)
C. I am falling apart! lol

Ana: What you wrote above cracked me up. It is so fitting for brain illness'. Right now I can comprehend A, B and C above. It really stinks but you have a good attitude right now. Keep it up.

Remember that steroids truly do have a major effect on ones emotional status. Don't feel bad about it. It is just part of the side-effects from the med. Also, from experience of taking them: Sometimes it takes a week/two for the side effects to linger out of the body after you have stopped taking the steriods/prednisone as well. So if you feel like you are going crazy after you have been off the med for a week- that is why. It isn't you- it is the nasty med.

Hang in there and take care!!!

Coffeegirl

[AynaDee]

Originally Posted by coffeegirl

A. This disease is literally eating me alive
B. I am a danger to my own self. (per my coordination being so jacked up)
C. I am falling apart! lol

Ana: What you wrote above cracked me up. It is so fitting for brain illness'. Right now I can comprehend A, B and C above. It really stinks but you have a good attitude right now. Keep it up.

Remember that steroids truly do have a major effect on ones emotional status. Don't feel bad about it. It is just part of the side-effects from the med. Also, from experience of taking them: Sometimes it takes a week/two for the side effects to linger out of the body after you have stopped taking the steriods/prednisone as well. So if you feel like you are going crazy after you have been off the med for a week- that is why. It isn't you- it is the nasty med.

Hang in there and take care!!!

Coffeegirl

And this is why I LOVE talking to you coffeegirl. we are most definitely on the same page with each other!

I cannot wait until the pred is out of my system completely, I'm driving everybody crazy I swear! lol Im like 10 levels higher than everyone else, and my moods are manic as hello!!!! lol I mean I'm going from laughing hysterically for an unknown reason to HULKING OUT and in the same breath going back to the hysterical laughter. Honestly, people that don't know I am on this horrible drug are probably thinking I should be locked up in an asylum right now, its bad. lol

but I somehow can find humor in it vs. my boyfriend who is kind of scared of me right now lol.
It just doesn't make sense to him.

I was sittin on the bed yesterday while he was just surfin the web, I started cackling like a hyena out of no where, so he looks up like 'what's so funny?' my response turned into hysterical laughter and I just put my hands up and shrugged. his eyes got REAL BIG,, then went straight back to the computer screen without a response. OOHhh GOSH! Its so ridiculous. lol I love his patience for my craziness lol

[Erin524]

I always take my baclofen just before going to bed. It helps me sleep, and seems to last longer than if I took the baclofen several hours before going to bed.

My neuro just gave me a ton of samples of Lyrica (med that helps with neurological pain) and told me not to take it at the same time as the baclofen (both meds make you sleepy) and the Lyrica seems to have actually helped some of the weird neurological acheyness...achyness? (is "acheyness" a word? aches? pain..whatever...finally! something that sort of helps!)

I do think I read somewhere that if you're taking baclofen for awhile, that if you need to quit taking it, it's best to step down slowly from it. I had taken it for awhile last year, and then quit taking it...got the surprise muscle spasms the next morning, so I ended up slowly stepping down from it.

Then after a few months, the spasticity came back a bit in my legs, so I started back up on it...one pill (10mg) a day, which was fine until last April when the latest flare lit up like a California wildfire. That spasticity really really sucked. It was full body stiffness. Giant invisible pythons wrapped around my ribs trying to kill me. Stiffness that made my toes on the right foot want to curl upwards. I went thru so much baclofen that a bottle that normally lasted me two or three months, only lasted me a month.

I dont like taking meds during the day, but there have been times where I felt like I needed to take something (stiffness from The Hug bugging me). That's when I break a pill in half and take the smallest dose that I can take. That usually helps. If it doesnt, I take the other half of the pill.

Once you know how baclofen affects you, you can usually figure out what's going to help and what might be too much. Even when I had the really really bad spasticity, I was still trying to take the least amount of baclofen that I could. It makes me really sleepy, and I like to try to stay awake.

It's really the only medication that I've been taking with any regularity for any of my MS symptoms. The Lyrica is a med that I havent taken more than 7 or 8 times so far, and that hasnt been every day. I just hate taking medicine.

[AynaDee]

Originally Posted by Erin524

I always take my baclofen just before going to bed. It helps me sleep, and seems to last longer than if I took the baclofen several hours before going to bed.

My neuro just gave me a ton of samples of Lyrica (med that helps with neurological pain) and told me not to take it at the same time as the baclofen (both meds make you sleepy) and the Lyrica seems to have actually helped some of the weird neurological acheyness...achyness? (is "acheyness" a word? aches? pain..whatever...finally! something that sort of helps!)

I do think I read somewhere that if you're taking baclofen for awhile, that if you need to quit taking it, it's best to step down slowly from it. I had taken it for awhile last year, and then quit taking it...got the surprise muscle spasms the next morning, so I ended up slowly stepping down from it.

Then after a few months, the spasticity came back a bit in my legs, so I started back up on it...one pill (10mg) a day, which was fine until last April when the latest flare lit up like a California wildfire. That spasticity really really sucked. It was full body stiffness. Giant invisible pythons wrapped around my ribs trying to kill me. Stiffness that made my toes on the right foot want to curl upwards. I went thru so much baclofen that a bottle that normally lasted me two or three months, only lasted me a month.

I dont like taking meds during the day, but there have been times where I felt like I needed to take something (stiffness from The Hug bugging me). That's when I break a pill in half and take the smallest dose that I can take. That usually helps. If it doesnt, I take the other half of the pill.

Once you know how baclofen affects you, you can usually figure out what's going to help and what might be too much. Even when I had the really really bad spasticity, I was still trying to take the least amount of baclofen that I could. It makes me really sleepy, and I like to try to stay awake.

It's really the only medication that I've been taking with any regularity for any of my MS symptoms. The Lyrica is a med that I havent taken more than 7 or 8 times so far, and that hasnt been every day. I just hate taking medicine.

Neuropathic pain is the worst! and I hate it sooo very much! I have actually been suggested lyrica for that neuropathy. so it's helping eh?
I am too scared to try any other neuropathic pain killers as I tried Gabapentin out and it nearly killed me, that was the most terrifying experience I have EVER lived through (and boy am I lucky I did live through it) in my LIFE! But neuropathy is so uncomfortable! The electrical (both sharp and dull) shocks, stabbing, tearing, pinching, burning, freezing sensations ahhhh!!!!

That's a bummer that the baclofen makes you sleepy, but I'd rather deal with sleepiness at this point than feeling like my back muscles are tied into a corset all the time.my stiffness and spasms are mainly in the center back muscles, down my spine, and they just tighten up so bad. Sometimes the tightness goes around my ribs too but the most uncomfortable to deal with is the tightness in the muscles around the spine, much like where you would tie a corset.

wow. that ^ was really repetative lol.

Thanks for letting me in on details for the baclofen and lyrica!

[Erin524]

I'm always really sleepy. I have insomnia and my brain apparently doesnt like to stay asleep, so I'm always tired normally. It sucked when I developed MS fatigue a few months back...all I wanted to do was sleep...and it was a bit of a war between the insomnia and the total exhaustion. At least the baclofen helped beat back the insomnia trolls.

I tried neurontin in May and HATED IT! It makes me feel really weird, skin crawly, creeped out, jumpy, nervous feeling...and it makes my feet swell up like clown shoes.

Not cool.

So far, I havent noticed anything funky going on with the Lyrica samples, so hopefully that'll be my neuropathic pain med...too bad it's freakishly expensive. (hence the samples the doctor gave me to try it out)