[patch]

Hello everyone, after 6 months of testing my lumbar puncture finally came back with my myelin elevated at 5.0. My left eye is still not moving to the left and my evoked potential came back abnormal.

So doctor wants to treat me for MS finally. I will start my infrusion (I think that's what they call it) at my house in one hour. It's a 1000 mg of steroids. I'm a little nervous but want to know if anyone has had this done and what did you experience.

Thanks

[Girlie Girl]

Good luck Patch! Sorry that you have to go through this MS crap. But at least you have an answer.

I have done the IV 3 times now. I usually have it done over 9 days at my house. You will feel fine, then loopy, drugged, high and ravenous! I ate like a linebacker! I gained 12 lbs to show for it! Mainly just rest. Take the time that you need. Are you out of work? Don't rush back if you are. It really isn't bad at all.

Let me know if you have any other questions. You can PM me. Good luck! Hope you feel better.

[tovaxin_lab_rat]

Hi Patch. I am glad they are finally treating you.

I've had about 30 IVSM 3-day infusions since I was dx'd in 2001. I am the opposite of Tracey...I sleep the whole time and I don't eat much. I do get the upset stomach so I keep lots of milk shakes (atkins type) on hand and drink lots and lots of fluids...water, iced tea, lemonade, cranberry juice. hot tea...whatever...especially during the infusion.

I've also learned that if they mix it with D5W instead of saline it 1) cuts down on that nasty taste and 2) decreases the fluid retention.

Also, I don't do the oral taper afterwards. It does nothing but wreak havoc on my stomach and I get no residual effect from it.

But as you will learn, everyone is different. If you get the high, then ask from something to help you sleep. You WILL need it. I don't.

Keep us posted on your progress. It may take a couple of weeks for all the symptoms to subside and remember to rest rest rest!!!!

[patch]

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

[FaithS]

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

[MSacorn]

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

[tovaxin_lab_rat]

Originally Posted by patch

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

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!

[tkrik]

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.

[the Bird]

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!

[JessieSue]

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