Does anyone know how much steroids we can have - like how often we can have an IV treatment - or oral steroid treatment?

I did a week of IV solumedrol (at 1 gram a day) from Jan 8-12, followed by a several day taper of oral steroids. It did a good job of knocking out most of the symptoms. But they are starting to return. Not as strong...but they're slowly creeping back in. I don't think I need as strong of a dose - but I want something to kick it in the butt (plus one new symptom is starting, not so good on that end)....so how much can we take? I heard someone in a chat room say his daughter is on oral steroids regularly.

Is it bad? Is it okay to take? Anyone know? Anyone have experience?

Thanks,

~Keri

Steriods can take over 30 days to realize the full benefit.

If you have symptoms returning then those need to be treated with meds depending on what the symptom(s) is.

For example, I take Neurontin for burning, tingling pain in my arms and legs.

Take a deep breathe.....exhale.....okay. It's gonna take awhile to know how your body is going to do.

Maybe this would be a good time to take up reading Seriously, something that will get your mind off of this and let you relax.


Kim

I loved how wonderful I felt on oral steroids...almost all symptoms and pain disappeared. I was on them for 2 wks in mid Dec.
After about 4 wks the sxs began to creep back. My neuro told me that I can't be on them more than 3 times/yr, since they are so bad for your body.
It would probably be best to ask your dr. And let him know that your sxs are returning...

Keri,

Each time you use steroids, it reduces the effect they will have on your system the next time you take them. Depending on the dose and how long you take the the medication will determine how many times your system is able to tolerate them. They can have some nasty side effects on you as well.

I just read the other day about a long term study they did on patients who used steroids for their MS. The conclusion was that while steroids reduce the symptoms of the patient during an attack, they had no effect on the course of the disease.

Harry

Call your doctor Keri,

one time I had more steroids in a similar situation....ask the doc, he/she will say yeah or nay!

Keri, I happen to agree with Harry.

Steroids are meant for acute exacerbation and not symptom management. Steroids have some short term and long term side affects and depending on your symptoms steroids can just be a short term "fix" for what can be a long term problem. And as Harry mentioned, the more you use steroids the less affective they become. Also, some will go into remission without the use of steroids.

Unfortunately, there is no quick or permanent fix to MS. Steroids help some but not others just like the DMDs - some find relief with them and some still progress.

There are symptom management meds that might help control some of your symptoms - please talk to your neuro. I know it's difficult to understand but having MS can mean learning to live with symptom(s) and adapting when necessary.

This disease is unpredictable and it's very possible to be at your worst and down the road realize you aren't doing as bad. If nothing else this disease will teach you patience.

Here is some information on steroids -
http://www.webmd.com/multiple-sclero...iple-sclerosis

Hi Keri!

I know how hard this is when you are first diagnosed. Everything comes at you at high speed, LOL!

Everyone is telling you to be patient. That's the best advice I've ever gotten. I am not a patient person.

You need to take the time to make the decisions that are best for you. Base your decisions on research, from reputable places like the NMSS, that you've done yourself.

Sometimes, I have found, you know yourself better than your doctor.

I hope your having a better day today!

Steroids are not "tylenol" for this disease, and as Harry and Snoopy have pointed out, the use of them is not to be taken lightly.

Please review the following information . . .

NMSS; steroids do not effect the course of the disease, and short and long-term effects of using them:

http://www.nationalmssociety.org/doc...nm_relapse.pdf

NMSS: people treated with oral steroids for ON did not do as well as those who didn't, and the use of them caused an increased risk of recurrence:

http://www.nationalmssociety.org/doc...onproblems.pdf

Optic Neuritis Treatment trial results:

http://www.nei.nih.gov/neitrials/vie...Web.aspx?id=47

Potential long and short-term side effects of steroid use:

Short term use:
- allergic reaction
- insomnia
- psychiatric disturbance
- stomach upset
- fluid retention
- increased appetite
- acne
- bone damage/avascular necrosis (although rare, it can occur even after a single dose of steroids)

Long-term use:
- weight gain
- high blood pressure
- cataracts
- hardening of the arteries
- diabetes
- life threatening infections
- osteoporosis, or other bone damage

Steroid Side Effects: http://www.rxlist.com/cgi/generic/methprd_ad.htm

Steroid Warnings: http://www.rxlist.com/cgi/generic/methprd_wcp.htm

Cherie

I have had tons of steroids and always bad short-term effects of swelling hands and feet, weight gain etc.


After my second cataract surgery (first one at 40yrs of age) and a bone density test that showed I have have a lot of damage I decided NO MORE steroids.


I got enough things going wrong and don't need to add to the list.

I had the steroids once (2 weeks of an oral prednisone taper)

I hated the side effects (constantly needing to go potty, stomachache, the opportunistic infections, and the bouncing off the walls)

Having said that tho, the reason why I took the steroids was because I had vertigo. Vertigo that would hit me with no warning, and would knock me to the floor and wouldnt let me get back up.

Vertigo is the worst symptom of MS that I've had so far. (2nd worst would be optic neuritis, but I never got steroids for that)

If I ever get the vertigo back (and I'm sure I will) I'll happily take the steroids for it, as long as it's IV steroids, I dont want to do the oral again if I dont have to. (I wonder if you have to do the oral taper after having the IV steroids?)

As much as I want to take a steroid for the occasional numb sensations, I wont ask my neuro for any unless it's a symptom that keeps me from having an everyday life. I'm saving the steroids for another major vision problem, vertigo, or a paralysis of any kind.

I can deal with numbness and pain and the other wacky carp that MS gives me. I may go a bit mad sometimes trying to deal with it, but I want to hold the steroids in reserve for bigger problems.