Steroids?

[elliebelle]

I was supposed to start on Tys but found out today that I am JCV+. I feel this huge let down as I had finally made the decision to change meds (as the MD has been encouraging for the last year because I had new s/s and new lesions on my last few MRI's) and now am stuck in a waiting pattern until BG-12 makes it thru the FDA. In the meantime my MD says we can use pulse dose steroids to treat the symptoms. She is leaving the decision of steroids up to me. MD mentioned 1 day monthly or 3 days every 3 months. I don't know what to do.

Steroids make me feel bad, as many of you know, and make me blow up like an oompaloompa. As of now, my vision is ok, my balance is not far off-that comes and goes, I can walk. But my neck hurts all the time which gives me a headache and causes my eye to hurt. I have new numbness in my back and a new shooting pain in the back of my left foot/ankle that feels like a fire ant is stinging me every 20-30 seconds (this is totally a new one for me-anyone else ever have this--I am assuming its MS related).

I am trying to make an educated decision. I have 2 ways of thinking about this. 1. Take the steroids and help get down the areas that are inflamamed so that the body does not have to work so hard. 2. If I can still see, walk, talk-I just need to continue to suck it up and deal with the discomfort because there might come a time that I wont be able to see, walk and talk and then when I need the steroids they won't be effective-but is the state of my body being in a crisis mode for a prolonged period causing any damage?
ADVICE PLEASE!!


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Redwings]

Hi elliebelle:
I did high-dose pulsed IVSM first once per month and then every two weeks for several years.

As you can imagine, if you opt for the 3 days every 3 months, you'll get a huge whack of steroids that's as bad as being treated for a relapse -- and without a relapse to justify why you feel so bad.

If you opt for 1 day per month, you'll still get a significant amount of steroid that covers you more frequently than the every-3-months option, but at a dose low enough to avoid the worst of the side effects. You won't bloat up significantly, you won't get the brain fog or body aches, and you'll lose sleep for probably only one night, no more than two.

Of course, pulsed steroids cause the accumulation of steroid damage, but the benefits may make the risk trade-off worthwhile. And considering that you may be doing it for only a year (or maybe less) until BG-12 comes out, the relatively short duration makes the risk less than if you were going to do pulsed steroids indefinitely.

Steroids can become less effective over time, but they don't become suddenly ineffective based on prior use, and they don't become less effective after only a year. Of course everyone is different, but I've been using steroids regularly for my NMO for 20 years and they still work well for me.

If you choose to start pulsed steroids, my recommendation is to do them monthly at a lower (but still significant) dose to get more frequent coverage and keep the side effects down.

[elliebelle]

Redwing, thanks so much for your reply!

Are you sure you have MS...LOL....you speak/type so eloquently and I struggle so hard to say/type what I want to say and it just doesnt come out quite the way I want it too!!

You got what I was asking and your answer helped me so much! You hit the nail on the head of how I want to proceed-I called the MD back today and am going with the monthly dose. Waiting now for everything to get set up. Thanks again for taking the time to respond. Have a great day

[its2much]

How often are you

on IV steroids? My neuro will not put me on steroids. Justr wondering how many of you use them and how often?

[jmfmwc]

I had a five day course of steroids in July. I did not gain as much strength back in my left side as my neuro would like so she started me on the pulse of one day in Aug. I go again on 9/7 for another day dose of steroids. I did get a bit of strength back after the Aug dose (as least I'd like to believe it) however, now I feel as though I slipped back to where I was - my balance isn't where it was before my flare, numbness throughout my left side...I'd like to hope that another dose of steroids will help but I'm honestly not so sure....

[1dayitwillNd]

I remember getting small doses of iv solu-medrol along with my first three Tysabri infusions earlier this year. I would get the steroid 'euphoria' and get talkative and be in great moods for several days after, literarly forgetting about any of the omni-present secondary nerve pain I have. After the fourth infusion I noticed that I didn't have that happen. I've got peripheral neuropathy that is always been bothersome (as a result from a damaging prior lesion). I've always wondered if a small dose of oral/iv steriods from time to time would help me feel better than taking the opoid derivative (oxcarbazepine) for nerve pain. But I've heard about the weird things that steroids do to the body...guess I should ask my neuro.

[Sara Angela]

My NP has put me on monthly three day Dexamethasone until the Copaxone can get in my system. It has seem to really help this last/first month. Predinsone would aways help, but always seemed to run out when it was through.

Sara

[its2much]

Incidence of osteoporosis

For those of you who have taken steroids for a period of time, do you now have osteoporosis?

[Redwings]

At my last bone scan, I was right on the borderline between osteopenia and osteoporosis. I also have steroid-induced cataracts.

[flossie]

steroids

I have been on steroids 3 days a month every other month. The steroids really help but it seems I get relief for about a month and then I wait for the next infusion. I'll have to ask my neuro if the one day a month is better.

I have been on steroids for about niine months. I just noticed more hair on the bathroom floor than usual.
Does anyone else have this problem?

[Redwings]

I just noticed more hair on the bathroom floor than usual. Does anyone else have this problem?

After my IVSM 3-days, I drop hair like crazy. I have a Golden Retriever, whose shed hair has to be thought of as a condiment , and I find myself picking my hair off of him instead of the other way around.

[pinkimartini]

Steroids & Avonex?

Second week back on the steroids and yet another week of just really rotten side effects. I thought I had finally moved away from the first few weeks of flu-like symptoms, headache but nope...my joints hurt now.

*sigh* Initially I had asked if I could switch to another medication since I don't mind the injections but they just take a lot out of me (I get a lot of delayed reactions). I swore I never wanted to be the type of person that whined but wow - I feel like I have become that person since I was diagnosed.