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Old 08-01-2005, 10:47 AM   #1
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beachlover247 HB User
Question Just finished my sm iv yesterday/need advice please

Hi Yall,

I just finished my 3 day SM iv yesterday...and my Nuer. sent a prescription in the mail for a 7 WEEK taper off dose! That seems like a long time! I hate this stuff. Need help on side effects...what's normal? I don't seem much better. Was really hoping my eyes would be better by now. I think if I could see better, I'd function better. P.S. I really don't think these nurses should leave a newbie to do their own iv. It was awful. She had to re-do my catheter yesterday to give my final treatment cause the day before when I had done my second, on my own, it hurt when I tried to flush with saline, hep, etc. and she had said to just stop until she got here the next day. When she got here, she said "Why didn't you just go ahead and take out the catheter? I told her there was a reasone I didn't become a nurse! I couldn't believe her. Sorry to go on and on, but it killls me that they expect someone who isn't feeling good and can barely see to do all of that. Anyone else had this happen? Thanks for listening and hope you all get the answers you need asap. I have a friend who is going throught testing-re-testing hoops and she's sooooo frustrated. I told her she definitely was not alone if that helps.
Thanks everyone!

 
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Old 08-01-2005, 10:55 AM   #2
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Jewel2 HB User
Re: Just finished my sm iv yesterday/need advice please

Hi,
My daughter usually just does a two week taper. One time she did three weeks because her doctor kept her at a high dose for a week to continue to combat the persistent symptoms. What dosage are you starting at in the orals? How many days at each dosage level? Did you ask his reasoning?

Take care,
Julie

 
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Old 08-01-2005, 11:15 AM   #3
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Re: Just finished my sm iv yesterday/need advice please

Well, since it was sent in the mail over the weekend, I didn't really get to ask any ?? As well as I could read the script..they're hard to read, it looked like 10mg tabs....I don't know how many per day, but I did read that I would reduce every 5th day.???? I have a call into the office, but it takes forever for them to call back. In the meantime, my husband was going to go ahead and drop it off at the pharmacy. I asked my sister (RN) what she thought and I asked the nurse about that was doing my iv, and both said it's a dr. decision....they're all different. My sister said that's what you're paying them for. I guess we just have to trust they know what they're doing.. While I dread the side effects...I have got to get better. I won't be able to go back to work like I am now!

Thanks!

 
Old 08-01-2005, 12:22 PM   #4
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Jewel2 HB User
Re: Just finished my sm iv yesterday/need advice please

I agree that each doc does things his own way and that's what we pay them for!

Generally, the oral side effects aren't nearly as bad as the IV steroid side effects because of the lower dosage. Usually they start the taper dosage at 100mg (10 tabs). The IV dosage is usually at 1g or 1000mg.

I've done oral steroids myself. Drink plenty of water, and take something to help you sleep.

Take care,
Julie

 
Old 08-01-2005, 01:13 PM   #5
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beachlover247 HB User
Re: Just finished my sm iv yesterday/need advice please

Thanks for the advice. Yeah, I had 1000 mg. x 3 days. Does iced tea count? Water tastes so awful after the solmed. Blaaagh!

 
Old 08-01-2005, 01:54 PM   #6
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kchs1 HB User
Re: Just finished my sm iv yesterday/need advice please

I KNOW WHAT U MEAN BEACHLOVER! EVERYTHING TASTED LIKE GAS TO ME AFTER THE SM. I DID 4000mgs or 4gs x 5 DAYS!!! EVERYTHING DIDNT TASTE NORMAL UNTIL AFTER THE ORAL STERIODS.

I FEEL FOR U SWEETIE. HANG IN THERE.

BLESSINGS

MRS. KCH-S
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KCHS1

 
Old 08-01-2005, 08:22 PM   #7
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Sharon Grace HB User
Smile Re: Just finished my sm iv yesterday/need advice please

Hey Beachlover! Congrats on getting through the IV treatment! Give yourself a treat! I had chocolate pudding to reward myself! After my 5 days of IV I went on three weeks of tapering Prednisone. There were a lot of side effects for me. Lots of muscle aches and shakes, terrible insomnia ( could barely nap for an hour at a time) , constantly had to urinate (no kidding - ran to the bathroom every ten minutes) also these drugs deplete your potassium so if you can get a sports drink like Gatorade with electrolytes it will help. I became severely dehydrated on the steroids and had to drink gallons of gatorade a day to keep up and ate two or three bananas every day for three weeks. I called my doctor several times to say how lousy I felt, and he said it was normal and I'd just have to ride it out. I hope your oral treatment goes smoothly and you aren't affected too badly. Keep me informed. Take care - Sharon Grace

 
Old 08-02-2005, 07:29 AM   #8
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Re: Just finished my sm iv yesterday/need advice please

No, iced tea doesn't count. In fact, caffeinated beverages will make just about all your side effects worse. Water, water, water. Fruits, veggies, and high-fiber foods will help too. Anything to flush all that poison out of your body.

That long taper sounds like a bit much, but maybe the dr is doing it because this is your first time on the IV. And I'm surprised you only did three days. I have always done five. And I have never done my own IV. I always go into my dr's office, and the nurse practitioners there do it.

Did your dr prescribe a sleeping pill? It really helps. He may have also given you an antacid. The steroids do a number on your stomach, and can cause heartburn.

As far as seeing an improvement... it's not immediate. It may take a few weeks to see anything. Basically, steroids just speed up what your body does naturally. So, you have to wait until your nerves are good and ready to heal.

 
Old 08-02-2005, 07:55 AM   #9
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beachlover247 HB User
Re: Just finished my sm iv yesterday/need advice please

Thanks for the tips dijiphavems,

I fix decaf tea cause my daughter likes to drink it so much. Is is just the caff. that you have to worry about? The doc did prescribe zantac to go along with the taper off. No, I don't have a sleeping aid, but I do have xanax that she prescribed just to get me thru this. She said to use sparingly as it is addictive. I have used 1/2 .25 tab at night just to calm my jitters enough to go to sleep. I feel as if my whole body is jittery. Even my eyelids!!! This whole thing really sucks! Excuse my terminology, but I can't think of another word that really fits. I'm supposed to go to an inservice tomorrow, but not sure if I should. I would have to get a ride, cause still can't drive and it's supposed to be 100 outside. I'm afraid it would set this healing process back, and I'm really afraid to do that.
What does your doc give you to help you sleep???? I would like to know, cause I'm afraid to keep taking the xanax. Thank you so much for your help! Sue

 
Old 08-02-2005, 09:29 AM   #10
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djpihavems HB User
Re: Just finished my sm iv yesterday/need advice please

Quote:
Originally Posted by beachlover247
Is is just the caff. that you have to worry about?
I feel as if my whole body is jittery.
it's supposed to be 100 outside. I'm afraid it would set this healing process back, and I'm really afraid to do that.
What does your doc give you to help you sleep???? I would like to know, cause I'm afraid to keep taking the xanax.
Hi Sue,

My dr gave me Clonopan (sp?) to sleep, which is also addictive. I think most of those types of drugs are narcotics, so can be dangerous if misused.

Yes, the jitters. You will have those as long as you take the prednisone. It just comes with the territory, which is why you shouldn't add caffeine to the mix! Plus, caffeine can dehydrate you.

The Zantac is good to take. You might need it for a few days after you stop the pills, so make sure you have refills available on your prescription.

And, yes it sucks. Everything hurts and just feels terrible. Slowly, but surely, your body will recover, and you will feel better. Did your dr explain why you feel so bad? Basically, you are in chemical withdrawal - like a heroin addict. Your body makes steroids naturally. They aid in all sorts of body functions. When you add artificial steroids to the mix, your body shuts down its own production because it has enough. Then, when you take away the artificial steroid, it takes awhile for your body's own production to kick back into gear. Your equilibrium just needs to balance back out, and you'll feel better.

Some other things to expect... you may feel bloated and look puffy. Don't worry, it's not real weight gain. It's just retained water, and will go away when you stop taking the pills. I know it seems counterintuitive, but the only way to shed water is to drink more. Your skin may break out. That is my least favorite part. You feel like hell, and then you look ugly on top of it. It's almost too much to take. You know about the shakiness already. You will probably be ravenously hungry too. Now, here is where you can gain actual weight. If you eat more, you will weigh more, and it won't just fall off. You might get a headache, and your joints will probably ache. My knees usually get very swollen.

Staying out of the heat is always a good idea, but heat-related symptoms tend to clear up as soon as you get cooler. So, I wouldn't obsess about it.

You will feel better in a few weeks. Just keep telling yourself that. The steroid side effects will go away, and you will slowly see some of the MS sympotms improve as well. But, it does take time. You have to be patient.

 
Old 08-02-2005, 11:02 AM   #11
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beachlover247 HB User
Re: Just finished my sm iv yesterday/need advice please

Thanks so much. I just got off the phone from my supervisor. She could not have been any nicer. Said not to worry about work. (I work in the schools as a speech therapist). I still have some time before kids get there and all and even then, that they could cover for me until I can come back. That's such a relief! There are two people who work at the main office that also have ms, so they're all familiar with it all. They are great support as well. I just talked to one of the ladies that has it and she just kept reassuring me, as you have, that I will get better and to just be patient. She also encouraged me to seek a referral from my neurologist to the U.T. Southwest Medical Center in Dallas. She said they have a group there that deals with ms only and that they are VERY nice and stay on top of all the latest reasearch. I think it's pretty hard to get accepted there, but with a referral, maybe not. So for anyone out there that is in the Dallas area....FYI. Thanks for listening and for your help!!!! Sue

 
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