1st steriod infusion today and Copaxone- any hints?
 

I have been going thru quite a bit lately and figured it was my AS. But after a trip yesterday to my nuerologist, she is chalking it up as an MS flare. She has scheduled me to have a 3 day round of IV Steriod treatment and then a 10 day tapered oral treatment. She also gave me a prescription for a sleep aid. I have never had the steriod infusion before. Any input would be most welcome as I am apprehensive if there are any side effects from it as I feel like crap already! Do you have any wierd taste sensations? They told me it would take about 1 hr each day. Can you get nauseated from it? I am already taking an anti nausea med as needed so hoping it wont be a side effect. I have not been on any MS meds up to this point as she was giving me a "wait & see" approach but yesterday told me she wanted to start me on Copaxone injections. I just hate shots. I have been taking a 1 x week Embrel shot for my AS and I dreaded that and now the Copaxone will be every day. Any insight on this med would be welcome also. I was hoping 2010 would be a better year.......arggg. Thanks for your suggestions.

I'm sorry you are going through so much at once. :(

I think everyone is different with steroids but I didn't have any problems on a 1 week oral taper. They recommend eating before taking it to avoid GI upset.

I've been on Copaxone for 5 years and feel it has been helpful. The shots aren't so bad if you keep in mind that they are your weapon against this nasty disease. Best of luck to you.

:hug::hug:

Drink lots of fluid before hand and over the next few days. Being well hydrated will not only help the nurse put the IV in but also with some of the swelling you may experience after the roids.

Bring some type of candy to suck on as the metallic taste can be nasty.

You can take Benadryl beforehand if needed to minimize any side effects.

Everyone reacts differently. For me, the 'roids make my fatigue worse. Others, it makes them feel great.

As for the C, there are many threads on here regarding it. I have been on it for almost 4 years (4 years in March). For me, it's been a "brain" saver. ;):p Have Shared Solutions send someone out to train you on how to do it. After a while it becomes 2nd nature.

citrus candy is awesome! lemon drops, or lemon anything! it helps get past that nasty metal mouth that comes with IV steroids.

Hang in there. :hug:

As stated previously, drink fluids...I used cinnamon hard candy as the infusion began...helped with that funny metallic taste.
The oral steroids gave me bad headaches, and I gained weight quickly...

I've been on Copaxone for 12 months. I use an Autoject pen, and it's no problem at all...no side effects, except for site swelling when I don't inject right.

Good luck...:hug:

When I had IVSM earlier last year, one of the things that helped the yucky steroid taste was eating garlic bread. My infusions lasted most of the afternoons (started at 10, ended at around 4 or 5...however long it took for the bag to finish)

I could order whatever I wanted to eat while getting the infusion. The first day I had a caesar salad and garlic bread. The garlic bread helped so much that the next several days that's what I ordered to eat. I'd have several pieces of garlic bread for lunch every day. (I think I had the steroids for four days...maybe?) The hospital's cafeteria made great garlic bread too.

yes, I had a garlicy taste in my mouth the rest of the afternoon, and I'm sure I kept the vampires away with that, but it helped the icky taste for me. I dont know that it'd work for me again if I ever have to do the steroids again tho.

REPOST from blog about this. Long but hopefully helpful.
And then I thought I should share this for anyone who is about to go on IVSM. These are things my doctor didn't tell me I needed.

1. Gatorade! Lots and lots of gatorade!You will need all of the electrolytes you can get.

2. Hershey's chocolate bars!Big ones! Why? Because the IVSM causes your blood sugar to go haywire and they best solution is a little bit of chocolate to help regulate it.

3. Cranberry juice. The last time I was on IVSM I ended up on water pills because I was retaining fluid so bad. i gained 7 lbs in 3 days! You need to be able to pee to flush some of this out.

4. Mints. IVSM leaves a horrible taste in your mouth. The mints help you to make it thru the infusion without being nauseated.

5. True Lime water flavoring packets. These are very strong and normally don't taste very good. If you are not hydrated it increases your chances of blowing a vein. My last 5 day round resulted in 6 blown veins. I couldn't drink water because of the taste from the IVSM. The true lime is very strong and helped to override that taste so that I could drink water.

6. Excedrin. Migraines normally hit me when my blood sugar starts spiking and falling. Excedrin helps.

7. Make sure all of your prescriptions are refilled. You are not going to want to leave your house to go get medications if you run out.

8. Movies. I rented a bunch of movies this morning because I know I am going to be home alone and not feeling like moving.

9. Fruit, Veggie, and Cheese trays. I buy the little ones. It helps to be able to eat a little bit every few hours. These are very filling, they help settle your stomach and regulate your blood sugar. they are also a lot more nutritious than popcorn or candy while you are zoned out watching movies.

Another helpful tip someone posted in response to that was high potassium foods which help regulate blood sugar and also help with water retention.

Good Luck!! I hope the steroids work for you!

For me, the biggest issue with the 3 day Solumedrol infusion was the lack of sleep - Your Doc set you up with a Sleep Aid ahead of time which is great! I found out the hard way that I would need that Ambien CR just to function. Chewing gum during the infusion helped with the strange taste and I made sure I had all the groceries I needed beforehand like someone else metioned already. Good Luck!

I just "celebrated" my 6 months on Copaxone and it's going great. You just have to play around with the right injections sites and settings for you but once you get that taken care of it just becomes habit.