The nurse left and after 20 minutes of the treatment she had to stop. My hand started to itch. She called the doctor and he said I may be getting a reaction to the latex, tape,or the cathader??? He did not want to take chances so he is going to think about maybe getting it done at the clinic and then the 2nd and 3rd dosage can be done at home.

I was so bummed out. I was looking forward of some type of help.;o(

Thanks for responding.

Dumb question how do you PM somebody to talk?

Patch

Re: Steroids

Hate 'em. But, for me, it's the only way to get me out of a flare.

I used to have 5-day IVSM (intravenus SoluMedrol)steroids; 1000 mg. Followed by long prednisone tapers.

The last several times, I have requested to take my steroids orally (1000 mg of prednisone, instead of IV's). My veins are difficult to find, so it is just my personal preference to avoid IV's. Once, it took 2 competent nurses 2 hours and 6 sticks to put my IV in.

Prednisone is also less expensive than IV's. That certainly is not the typical way to get a high dose of steroids, though. Pharmacists have usually not seen that type of Rx before, and call the doc to confirm that it is accurate.

The combination of steroids and flares (I'm not always sure what causes what) usually makes me tired and fatigued, but often unable to sleep, other than snatches. If sleeping is a problem, don't hesitate to ask for sleeping pills while you are on high doses of steroids. The sleep will help you to get well sooner.

As others have said, steroids often increase appetite and cause weight gain. Eat lots of fruits and veggies; drink lots of water. They can also cause "moon face".

Best wishes. I don't envy you. I am still tapering off of prednisone, following a flare that began the end of April.

~ Faith

Hi Patch
I glad you hava a dx, sorry it's MS. In the past I've done the IV steroids and become manic and ravenous. I am unable to sleep except for short bursts for a couple weeks, even with sleeping pills. Also, I take a med (prilosec/nexium) for my stomach so it's not as upset.

I've decided not to do it anymore as the sx that brought me too that point are still around when I get off my high. And I am overtired and fatter.

Everyone is different, so just try to track your bodies response this first time. I've also found that sucking on hard candy while being infused can dull the metallic-ey (sp") taste it leaves in my mouth.

Good luck, feel better soon.
's

To PM someone, you click on their user name and you will get a drop down menu with options. One of them is to send a private message to that user.

Another way is to go to the Tool Bar at the top of the page, User CP, click on that, at you will have a list of menu items on the left. One of them is to send a private message. If you know the user name, start typing it in the send to box and you will get a list of users that start with that name.

There is also a members list on the tool bar, if you have the patience to go through and try to find that user, you can do the same thing by clicking on their name and send them a private message.

I hope you can get the IVSM issue taken care of...allergic reactions are no fun at all!

Hi Patch,

Sorry you have to go through all of this. I am like Cheryl - I sleep, don't eat, and feel sick when I have to do the IV steroids. I do get swollen and the moon face as well.

I hope that they can get your reaction resolved and that you can resume the treatment soon.

Well, Patch,

We are all different in our reactions! Just be sure to keep your doctor abreast on how you do!

I don't sleep/or sleep a lot! Get crabby and mean! No one at my house likes me on steroids.....but it is one of those necessary evils....

who knows you might have the reaction my neighbor does and feel WONDERFUL!!! She goes on cleaning sprees and has a blast til the steroids are done!

You found us, so that is one big help to you!

Hiya Patch! I get IV steroids every other month infused over 2 days. The first two or three nights I have a really hard time getting sleep, but then it evens out. One piece of advice I can give you id to drink LOTS of ice water. The steroids would leave this nasty metal taste in my mouth the first day or two, ice water will help that flavor go away, and it helps quench cravings. Oh, one more thing, I tend to get some nasty heartburn when on the 'roids, I found Pepcid AC tablets work best for me. But you should just have some kind of digestive aids nearby. Best wishes that everything works out and that the steroids will help you!
~~~Jess

Guess what. Alot of us have done the steroid thing...

I did it once. In 1988. It was not for MS, but for optic neuritis. I was in the ONTT - optic neuritis treatment trials. 3 day 1000 mg/day steroid IV. I did it in-patient because they had to monitor and test me.

Needless to way, the trials kinda proved it works. Not only for ON, but for other MS related things.

Tom

Thanks everyone for the wonderful encouragement. I will keep everyone posted. Oh one more question has anyone experienced one your eyes no longer moves to the outer part of your eye which causes double vision? If so does it come back after using the steroids.

I have 6th nerve pasley and was just wondering will I ever stop looking cross sided.

patch