couple questions for who's listening...

[mncontractor]

Hi everyone. Been awhile since I wrote..still reading but just sitting in the shadows.

I have had a few changes and I'm curious for some answers from someone else if they have had any of the same experiences.

About 3 months ago, I had my check up...discovered more activity and the Rebif was causing my liver some grief and some moodiness.

This prompted a change to Copaxone and another mri. Blood is good this checkup but my MRI is filling up with spots. It has gone from a couple, to several spots in a very short period.

I'm a bit worried. I only suffer from some cognitive issues and a bit of tired legs, extremely sore back, but quite good honestly.

My doctor at the MS clinic has taken an agressive approach by putting me on some heavy steroids (Methylprednisone) like 1000mg per day. Then 1000mg once per month for two days, for a period of six months.

OK....why is my brain filling with lesions and no real problems? I feel like I am playing russian roulette and my luck is running out.

Any thoughts??

I do feel so much better getting off the Rebif. I also hit the Lyrica pretty heavy to bring my back pain to a dull roar. What a blessing that stuff is.

Please chip in if anyone else has experienced this type of road.

[Thinkimjob]

Lord knows what you do. I was told steroids would be brilliant if you could take them all the time in big doses without getting all the nasty side effects. Dr offered .5 every day. Not really enough to do anything.
Mind you, no one really knows what the long term side effects of the dmds are, either.
So here we are, bemused, with nothing that really does the job.
Don't know what Lyrica is, but if it works, stick with it.

[0485c10]

Brainstorming:

** Moderator's note - copied & pasted material removed per MSWorld guideline #6. **


http://en.wikipedia.org/wiki/Brainstorming


Thats my intro...


i'm thinking one possibility could be that since copaxone takes 6-9 months to reach full effectiveness, your doc is using steroids to supplement copaxone until it gets up to full speed. and while copaxone has not reached full effectiveness your MS is using the time to make more white spots...Bad MS, bad, bad, bad.....




and i am curious if you have had any spine mri's for the back pain


and i really really like this article by the Rocky Mountain MS center where they say that a person with ms has 10-20 inflammatory events per year but only one relapse.----


http://www.mscenter.org/images/stori...er09lowres.pdf



page 4 end of the 2nd column....those inflammatory events are lesions and they are silent, they didn't cause a relapse. we wouldn't know that they were there without the MRI but now that we know they are there we will do something to prevent them--hence Rebif to copaxone and others down the road as needed.

but its ms and your white spot build up is normal for ms. its just finding the right med to slow them down because it not normal for a person to have them. but a person with ms....is not a "normal"person.

[tellnhelen]

Hello mncontractor
can't really speak to your situation but I am willing to share my thought abouts myself. I was dxed in 1993 although I probably had sxs since early '80s. I have progressed from RRMS to PRMS...(ain't that a trip....I'm progressive but still have relapses)

1. Unless it's an emergency(e.g., not walking/standing at all)no longer willing to take steriods....I don't see steriods as a maintainance drug...too many bad side effects
.
2. I'm on TYsabri now for 8 months. Things seem to be going well.

3. Have combined Tysabri withan exercise and vitamin regimen. Just like a don't miss takiing Ty, I don't miss daily upkeep activity.

I think you should not try interpret the medical data but create a "survival" plan to maintain asyou can.

for me its meds, diet, exerciseand vitamins

[salamandertom]

Hi,
I was put on Betaseron (a lot like rebif) and after 5 months had a new lesion and 2 flares with worsening symptoms. THey have me trying 2 more months, but it is doubtful anything will change, and I will switch to something else. I am surprised you were switched to copaxone honestly, I would have thought you would have been switched to tysarbi, did they offer that? I expect to have that offered to me.

I suffer from incredible pain as well. I am currently working my way up to 2400 mg of gabapentin in addition to the 60 mg of baclofen I take. I think the combo really helps me.

Good luck.

[mncontractor]

Thanks all

Thanks for the inputs. I understand everyone here is passing through this phase in their lives and each has it's own path to wander through the forest.

Not just around a tree, but the entire forest.

I have had a spinal MRI and it was positive for several spinal lesions. Mostly in the neck area with maybe a half dozen or so spots.

The doctor I see was at the Mayo clinic for several years before moving to our area. He works with a team of docs and I am fairly confident I am getting the best treatment for the situation.

He says "You look great Your exams are remarkable, but your MRI's are telling a different story." So he confers with the other 2 MS specialists in their office and they came up with my plan.

It seems they are buying some time for the Copaxone to get fully revved up as 0485c10 stated earlier. That makes sense. The amount of roids seems high, but they are getting after it as aggressively as they can.

Time; either against me or for me?