Quick help please

[football-mom]

So I saw my neuro this afternoon and he seemed kind of shocked at how badly my perfectly normal gait deteriorated in less than two weeks since the last time I saw him. He's ordered pt for gait training and tried to talk me into two more days of iv steroids, and even offered to let me do it outpatient. I said no, because even though my walk is weak and off right now, I feel I really turned a corner today and am starting to feel good. I think a few more days with the cane is all I will need.

Then I talked to the assistant about getting the paperwork started to move to tecfidera. I admitted to him that I had five Rebif shots left that I would never take and I certainly would never buy another box. I'm a little bitter that after 28 months of faithfully giving myself those horrible injections of acid they failed me so spectacularly. I know that's not rational but its what I feel right now.

[Fed Up]

fed

[rgngsmom]

Hey Football-Mom. I am glad to hear that you are feeling better!

About the Tecfidera - it has alot of potential side effects, one of which is worsening of your gait through a decrease in your sense of balance. This I can tell you from personal experience. It also comes with potential nausea and vomiting. SO, ask for a script for zofran from your doc. My neuro has me taking aspirin an hour before the tec to avoid the hot flashes that are also a common side effect, again, check with your neuro. The med for the balance issues is Ampyra, which is great. I had a terrible problem with my balance after starting the Tec, but it really has greatly improved with the addition of the Ampyra.

If you have had any history of seizures you won't qualify for the Tec.

All that said, I feel better on the Tecfidera than I have in a long time. I wish you improved health with your decisions, and please keep us informed!

[marisb]

Steroids, Tec, Ampyra

Football Mom,


I hope you're feeling somewhat better by now . I had the IV solumedrl only when I received my positive dx 15 yrs ago. Since then I have refused it any time it was suggested. I'd rather sweat out a flare than go thru that ever again. It took me 6 weeks to titrate down and another 6 weeks to get back to "normal" . It wasn't fun.

As far as Ampyra, I love it . I've been on it for almost 8 mos and it makes such a positive difference in my walking. As of my last walking test in June, my walking had improved by 30%. What could be a better advrt for it?

If you're already back to work, take it easy. You're probably still on steroid high, so don't let it trick you into overdoing.

Feel better fast .

Peace & Serenity,
Maris FONT="Comic Sans MS"][/FONT]

[football-mom]

Thank you all for the good advice. Yes, my progress has been very up and down and the side effects from the steroids have been bad enough to erase nearly all the benefits I got from them initially. I am back at work, working as many hours as possible, but have not made it through a full 8-hour day yet.

I did have an extremely scary moment on Monday. I was in the drugstore picking up some extra fiber, had to bend down to the bottom row to get and literally got stuck. I could not for the life of me stand back up. Luckily a stock boy came along and pulled me back to my feet and I was fine once i was up, but just that sudden overwhelming weakness was enough to make me think. Now its kind of the in the back of my head that I may be "done" and have to go on disability and all kinds of crazy thoughts.

I still have to be off the steroids for one week and get a clean lab panel before my neuro will let me order the Tec, so that's at least another 10 days before the prescription can be called in. I will definitely be requesting Zofran or something similar to go along with it.

[football-mom]

I'm being readmitted. I have some kind of acute liver toxicity thing going on. It has to be all the meds, I only have maybe 3-4 drinks a year. I want to cry.

Has anyone ever had this happen from high dose steroids or something?

[Fed Up]

Mine have gone up on lower doses, but always came back without medical intervention.

What a big disappointment to read you are back in the hospital.

X 12 sent your way with hope and best of results! Hope you are up and 'walking' soon! fed