Doctors visit need advice

[RedTalon]

I have my first neruoglist visit in awhile this friday.

I am hoping to get things sorted out with medicaid fully but the visit is only 400 or so bucks so at-least can use the trip to get my spend down met. I am going to ask the doctor for the steroid treatment but need to know the difference between the oral ones and the infusion ones if anyone can give me advice. My flare is not super bad just stiffer and more spasms then normal plus more balance issues, does that sound like the type of flare you get hostplized or chances are its going to be outpaient iv treatmnent again if its not the oral meds an d provided medicaid gives the go ahead.

I can get around my own place ok and so on just a bit fearful and my doctor is more the what does the paitent want type deal anyhow. Just a bit nervous and not sure what to think, I am not has bad as my first flare just got the old freakstien walk type deal going on and the dizzy part with looking down. My last major flare I was tripping all over the place and had bad shaking inside my body.

Just any advice would be nice I dont feel all that bad just wish my legs where working has my brain wants them to and the fatigue is also a pain. Probbbly going to use one of the wheelchairs just to be on the safe side when going in depending on my fatigue and balance and other stuff.

Sorry for any errors and typos just having a bad run with mobolity and want views and advice.

[KoKo]

Hello Warren

I'm wondering if you would get more responses if this thread was put in the Medications Forum.

Personally, I haven't used steroids so I'm unable to help, sorry.

Let's bump this up, and see if you'll get some responses. If not, we'll move it to the Medications Forum.

Good luck!

Take care,
KoKo

[Redwings]

Hi Warren:
The intravenous steroid infusions are what's called high dose -- usually 1000 mg per day for three to five days, depending on how severe the relapse is. Sometimes the five-day series is a little lower on the dose, but sometimes not. For moderate symptoms, a three-day series is usually enough.

Oral steroids can also be given in high dose -- 1000 to 1200 mg per day -- but this is a new trend, and not many doctors are prescribing high dose orals yet. Because the dose is so high, these oral steroids are just as effective as the IV version. Not much difference at all.

The confusion about oral steroids is that they have traditionally been used at lower doses, say 100 mg per day or less, which is a small fraction of the IV dose. But this point is very important: it's the LOWER DOSE of oral steroids that makes them less effective than high dose IV, NOT because they're taken orally. The "oral" part has little to do with it. The strength of the dose has everything to do with it.

Many neurologists prescribe low dose oral prednisone to treat exacerbations when the symptoms aren't very bad. Sometimes the dose is too low -- like a dose-pack of about 4 mg per day. (Compare 4 mg to 1000 mg.) If symptoms aren't bad, that might be all that's needed (although, personally, I don't understand how because the dose is so tiny).

If your symptoms are really bothering you, then a good whack of high dose IV Solu-Medrol might be beneficial. But along with the benefit there are many side effects. Sometimes the side effects alone make a person so sick that they vow never to take IV steroids again. Sometimes blood sugar and blood pressure go up so high that more medications are needed to keep them under control.

If you've never had high dose IV steroids before, you need to be prepared to be cranky, mentally foggy, sleepless, ach all over and feeling sick. You might feel worse before you feel better. You might even need someone to stay with you to watch you for a few days until the side effects wear off.

The other thing to bear in mind is that high dose IV treatment is usually reserved for the beginning of a flare-up, because Solu-Medrol is most effective within two weeks of the start of a flare. After two weeks, many doctors won't even prescribe steroids because the damage is already done.

If your symptoms are only moderate, then your doctor might decide on some lower dose of oral prednisone to see what effect it has. A lower dose might not be as effective as a higher dose (that is, high dose orals or high dose IV), but the side effects shouldn't be as bad, either. That doesn't mean you won't have any side effects, but they frequently aren't as bad at lower dose. It's a trade-off.

One benefit of oral steroids is that prednisone -- whether high dose or low dose -- is relatively inexpensive because it's available as a generic. Heck, it's almost what you'd call cheap. Another benefit is that oral steroids are easy to take -- you just swallow like any other pills. Nobody has to "administer" them to you.

IV steroids are more expensive, partly because of the labor involved. A nurse has to put in the IV needle/catheter and usually mix the med and attach the IV line. This can be done in an infusion center or clinic -- which means you have to be able to get there for several days in a row.

Or the infusions can be done at home, which requires a nurse to come to your place, either every day to do the infusion, or at least on the first day to put in the IV needle/catheter and then train you how to mix and hook up the IV to do the infusions yourself. For people doing their own infusions, the nurse usually also comes on the last day to remove the IV needle/catheter and put a bandage on the infusion site.

What your doctor decides to prescribe will be determined by how bad your symptoms are and how long ago your flare-up started. So be prepared to discuss with your doctor the risks and benefits of 1) high dose IV steroids, 2) high dose oral steroids, and 3) low dose oral steroids.

[onlyairfare]

I had high-dose IV steroids only once, and it was done at home. The nurse came the first day and started the IV and hooked up the first bag, left the other three bags for me to keep in the refrigerator and hook up myself. I think they were pre-filled with the Solu-medrol, no mixing involved. I took out the IV myself when the last one was done, but then my husband is a nurse, so probably the Home Health Care nurse who set it up felt that we could handle it.

When I did an overseas trip for 3 months, my neuro gave me a huge bottle of prednisone, with instructions to take 1,000 mg daily for 3 days if I had a flare while I was over there. That would have been a whole handful of pills, but Redwings is right - it was very cheap. I didn't have a flare, so I didn't need them anyway, but I had the feeling the neuro didn't really like the idea of oral therapy. He prescribed it because it was that or nothing. I always wondered why go to all the trouble, pain and expense of an IV, if a handful of pills worked as well.

I've been lucky - the steroids haven't caused me any side effects other than a little trouble sleeping and being very hungry. I've had to take oral prednisone for asthma fairly regularly, but the doses are much lower, only 40 - 60 mg a day, tapering over a week or 10 days.

for my fatigue, I take Provigil and it works great.

I hope all goes well for you Warren. If cost is an issue, maybe your doctor would prescribe the oral prednisone instead of IV. I think my big bottle of 3,000 mg was only about $20.

[wkikta]

No mixing with the IV Steroids, they come ready to go in their own bag. The pills are not as effective as the IV for Optic Neuritis. But, your symptoms don't sound too bad and if they are not affecting your life too much, why do the Steroids? They won't make you any better, just better sooner.

There can be too many bad long term effects, very bad for the bones, to justify them if you don't really need them.

And yea, use one of the chairs. That is what they are for, why let them go to waste.

[RedTalon]

Thanks for the advice everyone, its just this stuff has been really confusing lately, I have been having trouble but its just so damm confusing and part of why I am going to ask my doctor is going to explain that the sxs flux so damm much that I am not ever sure if its a true flare.

But sounds like iv steroids may not be an option in this case if what I read by redwings is right.

Its just my sxs have been working like this I get up in the morning depending if its cooler or warmer I am still stiff either way, cooler mornings I am more able though and go take my shower less problems getting into it , and sorta the polar on warm mornings, have the ac at 75 so its like my body know which days are naturally warmer and which aren't. Has the day goes on my sxs get worse and basically use walls or railings for support to walk, can't walk down the steps, but can go up just fine, I get vertigo going down steps. But by the end of the day my balance is fully shot, though have no problems doing things in a chair o sitting stair. Its just has been fluxing alot and my doctors nurses was like not sure if it is a flare but if it is need the steroids but the doctor will need to see you first. Thee, more to the sxs but that is a rough giest of it from day to day, basically had to sit on my hands a few weeks to get a visit

I get the feeling he may try the low dose oral steroids now to see if it has any affect

Sorry for the length of that block of text and any errors/.

Thanks for those who have posted so far.

[Redwings]

Hi Warren:
Have you tried Ampyra? I don't remember you saying that you have.

There are several threads about it in the Medications section. For some people, it helps the nerve signals to get transmitted to the limbs better and helps them to walk better. It might be helpful for you since you're so heat sensitive -- heat makes symptoms worse by interfering with how nerve signals get transmitted. Ampyra doesn't work for everyone, but it could be worthwhile to ask your doctor about it and worthwhile trying.

Don't quote me on this, but I think the manufacturer has an assistance program that would cover the cost for you.

[RedTalon]

RE: Redwings

Hi Redwings

I will look into the assistance programs but also on medicaid also, and medicaid does cover Ampyra just my doctor needs to get permisison to prescribe it in ohio from the medicaid program, and getting permission is sometimes a pain I heard but will ask my doctor about the med and about the program also, but have two options to get it hopefully

[BigA]

Warren,

I wanted to mention that no matter what you do, actual bed rest (not sitting up) is the most important thing after an exacerbation. Be sure to get as much as you can handle.

The other thing is that some of the weakness you may feel is from the exacerbation and some may be deconditioning - your muscles will get weaker during the weeks and months you take it easy, but it's through inactivity. This can be improved through exercise if you are able.