Why can't we take steroids all the time?

[alishape]

iPrednosolone is awesome! It makes me feel as close to normal as I have for at least a year. My doctor won't give me any more.

I guess this is my new normal, but boy would I like some more steriods.

[Sequoia]

We can't take steroids all the time because the long-term side effects (osteoporosis) are so bad for us. That's why many doctors try to limit their patients' exposure.

I have had MS for ~36 years, 10 years since diagnosis, and have never had steroids. My husband has had them for Crohn's Disease and hates the way they make him feel.

People seem to either love 'roids or hate 'em.

[MsKitty]

Sequoia is exactly correct! The long term effects of steroids are not fun! I took steroids years ago for relapses (ON episodes and legs not working) in early years of my diagnosis (2003 - 2007).

I am still recovering from the ankle surgeries I had to have to save my foot from amputation. Make sure everyone that takes steroids talks to their doctors about Calcium and Vitamin D, especially to save possible damage. I didn't and I wish I could have saved myself from this pain. I still have 3 more months of physical therapy. I had halo's and rods in my leg for three months, now I have a soft cast for ...I don't know how long.

Just be careful with all your meds...discuss possible problems with your docs.

Lisa =^..^=

[Redwings]

In some inflammatory conditions, patients are on some dose of steroids all the time when other medications aren't adequately controlling the effects of the disease. Traditionally, MS isn't one of those conditions.

In those other conditions, as in MS, the goal is to get patients off of steroids as quickly as possible, and onto other medications with a different risk/safety profile. As Sequoia and MsKitty pointed out, long-term use of steroids causes other problems, including osteoporosis (which was mentioned), bone necrosis (death!), cataracts, glaucoma and diabetes, among other things. Diabetes kills people far more often than MS does, and can cause debilitating peripheral neuropathy, making it a suboptimal trade-off.

When steroids are used as a maintenance med, it isn't because they make someone feel better, which sounds like why you'd like to be on them all the time. They're used to try to control the destructive effects of a disease. The side effects can get to the point where they don't make anyone feel better anymore.

I have NMO, and I've had problems with all of the feasible immunosuppressant medications. Because I don't really have any drug options left, I'm on a low dose of daily prednisone. I live with the short- and long-term trade-offs every day. I have steroid-induced cataracts and osteopenia. I still haven't lost the moon face from the 3-day IVSM series I had 2 months ago. Tonight we're expecting the biggest, brightest full moon of the year, and I'm not sure anyone will able to tell the difference between the moon and my post-steroid moon face. You don't want that!

[beckyd]

And eventually steroids just quit being effective for most people . I've had MS for 15 years, and whenever I had relapses the first few years, IV steroids were great - they wiped away the symptoms I was having. Unfortunately, within a few short months, I would have another relapse & back I would go for more.

Finally, the relapses stopped and my symptoms continued to progress, and I had gone from r/r to secondary progressive. I tried having once a month steroid infusions since that seems to help some people. But, alas, not for me.