[Erin524]

I've been on oral pred since saturday. I havent noticed any improvement since starting it. Feeling in my left hand and left foot actually seem to be worse.

If the pred was going to work, wouldnt I be noticing something by now?

Sometimes I'll get a sensation that feels like the numbness is lifting, but it doesnt last for more than 5 or 10 minutes and then things are totally numb again. I dont even know if I'm actually feeling the numbness lifting, or if it's a breeze on my arm or just some weird MS sensation going thru my arm. My left foot just feels more weird than it did before I started the steroids. Like more of it is numb than it was on friday. Numbness there hasnt really increased, just seems like more of the foot is affected.

I'm noticing it's a lot more difficult to type with my left hand now. The pinky finger misses a lot of the letters that it's aiming for.

This is starting to irritate me. I want the stupid prednisone to start working.

I called the pharmacist, and she told me it should be working by now. I called my neuro, but he's out of the office this afternoon.

I hope that I dont need to go get IVSM. It's a lot more expensive than a $6 bottle of prednisone.

[Kitty]

My Neuro won't prescribe Prednisone for numbness. He says it doesn't help that sx. I've taken it before (had some left over 20mg pills) but it didn't seem to help the numbness. I usually just wait for it to run its course. Both my feet and lower legs are numb right now but it seems to be easing up ever so slowly. My right hand and arm has been numb for close to 2 years now....Neuro says it's permanent nerve damage. I've gotten used to it, though, and aside from a little aching when I've overdone it I don't pay much attention to it. I can still walk and get around....however gimpy I may look......so I'm happy!

[Erin524]

well....crap!

This better not end up being permanent. I've never been depressed that much about the MS, until now. I NEED my hands...both of them! I crochet and knit, that's what keeps me sane, and while I can still crochet and knit with this numbness, it's not as enjoyable as it usually is.

Maybe it's not doing anything for the numbness, but maybe the pred is helping whatever spot it is that's got the inflammation and the inflammation will clear up soon and maybe the numbness will go away then??

It's not just hand and foot numbness, but the entire left side of my body below the neck. (would that be transverse myelitis?) I did feel some numbness in the left side of my face last week, but that seems to have gone away. It also seems like in the left hand, it's not just numbness there, I think there's a problem of some sort with my ability to move the pinky finger and the ring finger to some extent.

I'm pretty sure this is from the lesion that I have on C4.

I had a really really sore neck for a month or so, the pain started to get better a couple of weeks ago, but that's about when the numbness started. I wonder if there's a connection between the neck pain I had and the numbness now?

[Kitty]

I have spinal lesions, too. Yours may not be permanent but it's always taken my bouts with numbness at least a couple of months to clear up. At least with my legs it has. My first experience with numbness was before I was dx and I thought I had a pinched nerve. I was numb from the waist down.....totally. Even my behind was numb! It went away (slowly) on it's own after several months. That was my first major "flare". My next one was a couple of years later and it was double vision. Again, it lasted several months and cleared up on it's own. That, however, I had to address more thoroughly than I did the numbness. Strange thing....each time it began in Sept/Oct and lasted through December.

I've had to relearn how to use my right hand. It was difficult at first and I couldn't even blow dry my hair using that hand (I can now, though). Good thing that came out of that episode is that now I can use either right or left to do just about anything!

I hope you feel better soon.

[Erin524]

I can use a hair dryer with the numb hand, but I cant use the numb hand to move my hair around while the other hand is blowing hot air onto my head and that hand...makes the hand more numb. (yay for uhthoff's phenomenon...argh!)

I can knit and crochet with the numb hand...the yarn just feels horrible to my hand tho. Yarn feels yummy to the non-numb hand tho...just feels craptacular to the left. That's what I'm really hating. Not enjoying my hobbies as much with this.

[dmplaura]

That doesn't sound enjoyable. Sorry to hear this Erin. I hope this subsides for you.

From someone who's lived with chronic pain now for many years as a result of this crummy disease, here's one of these wishing you well

[Erin524]

It's still freaking numb.

I'm wondering if he's even giving me a high dose.

The pills are 10mg pills, and there's only 70 of them.

I'm taking 6 for three days, 5 for three days, 4 for three days, 3 for three days, 2 for three days, and 1 for three days.

and I think I might have just figured out the math for that...and it's not correct...maybe (I suck at math)

If I took 6 for the first 3 days, that was 18 pills, then it's 15, 12, 9, 6, and 3.

18 + 15 + 12 + 9 + 6 + 3 = 63

There's 7 pills not accounted for.

What the heck?? (calling pharmacist...)

Edited to add:

ARGGGGGH!~~

His directions may have been wrong. The pharmacist said the directions were confusing to her. They say

Take as directed.
Beginning at 6 tablets
three times daily

Friday, when I picked it up, it was nearly 10pm, so I called the after hours number for the neuro. Got a different neuro. He said the directions were confusing too, and did the math and said for me to take it the way I was taking it.

Maybe this is why it's not working?

argh1!!! SIX DAYS! I've been taking it for SIX FREAKING DAYS and apparently taking it wrong!

dangit!

Altho, the last time I had oral steroids, which was 2yrs ago and prescribed by a different doctor, his directions were very similar to how I've been taking it this time.

Now I wonder if he really did want me taking 18 pills in one day. But, that's a lot of pills to choke down.

Does any of that make sense?

I guess I have to call him in the morning. Maybe he'll adjust the Rx, or add some more to it or something... Next time he needs to write it out better.

[pud's friend]

180mg a day would be too much I think. It sounds like a tapering dose from 60mg down would be about right.
i took 75 for 3 days then tapered down when I had my (not) Bells palsy.
The thing with pred is that it only reduces a swelling. If your numbness is from nerve damage then pred would not work would it? If its caused by inflammation, say from a spinal lesion/swell, then maybe it would help. my neuro has often said that pred would be of no use for numbness.
Or it's quite probable that I'm talking absolute pants and got it all wrong.
take it easy anyway.

[Erin524]

I'm thinking that he didnt give me the pred for the numbness. But for the pain and what might have been the impending paralysis of my hand/arm/entire left side.

I've noticed something that I was overlooking because I've been so centered on the numbness. My hand no longer feels like someone parked an aircraft carrier on top of it. And, I can move my fingers better than I could last week. (still cant feel the yarn when I'm crocheting or knitting. Keep dropping my working strand because it slips out from between my fingers and I dont notice it)

Last week my hand hurt so bad, that I was crying myself to sleep. It felt like it was being crushed right on the joints where the pinky, ring and middle finger meet the hand. Now it doesnt hurt there any more. Fingers are still a bit stiff, but they also feel like polish sausages to me. I can now bend them without much problem.

I noticed tonight that I can do the alphabet in sign language with that hand better than I could before the pain and numbness started.. (been using the sign alphabet as a way to keep my hands agile for crocheting for years..)

So, maybe the prednisone is working, I was just not paying attention to the right symptom. The numbness is annoying and the most constant, so I've been centering on that symptom, and not realizing that my hand doesnt hurt like it did last week.

So, yay! I guess the prednisone IS working...just not on all the symptoms that I want it to work on. I guess I'll take being able to move my fingers over being able to feel them. I just wish that yarn didnt feel so craptacular to my skin right now.

I do think I have something new starting tho...not sure if the steroids are causing it. My left leg is really really tired feeling. Enough that I'm noticing it when standing for more than a few minutes.

I'm going to go attempt to sleep. The steroids are giving me some pretty nasty insomnia tonight. That's starting to get old.

[Dejibo]

no advice, just hugs