intermittent steroids, anyone?

[jrterriers]

Has anyone done intermittent steroids? My neuro wants me to consider doing a high dose of Solumedrol one day each month for my secondary-progressive multiple sclerosis. I have done the weeklong blasts of Solumedrol once and had no overt side effects except edginess and that horrible metallic taste in my mouth from the steroids.

Just wanted to see what others thought about the experience.

[jrterriers]

Thanks for the info. I will check it out!

[Quixotic1]

Have you read the "Steroids - Friend or Foe discusion?"  The two are the same.

Quix

[jrterriers]

Thanks for the info and tips!

Yes, the neuro mentioned that he'll check my bone density if I go the steroids route. I'll keep you posted and we can compare notes on how this is working.

I am not currently on other medications. I previously was on Avonex and then Copaxone, both for several years. The neuro says neither appears to do anything for secondary-progressive disease, so I quit 'em.

The doc and I discussed the low-dose chemo route, but agreed that because I have a heart-valve defect and resulting aortic regurgitation, it is really not the small risk the drug (can't remember the name) carries in terms of possible heart damage/complications.

My neuro also mentioned 4-aminopyridine. I am trying to read up on this before I decide to take that plunge. I am relatively close to Denver, and my doc says there are a couple of pharmacists in that city who are mixing and dispensing this. But I am uneducated about it so far, and I also don't know what my insurance would say/pay about this drug.

I look forward to Quix's steroids info page.

[Quixotic1]

I just started the 1000mg once a month routine.  I've been on Avonex for 14 months, and my exam is stable, my MRI 6 months ago was stable, but my symptoms are not.  I'm having too many days of worsening weakness on the right side.  So my MS neuro pressed to begin augmenting the Avonex with the once a month Steroids.  That's really common in this part of the country - Pacific Northwest.  But, with only one month under my belt, I have nothing to report.

My neuro insisted on a DEXA scan to start with even though the little scientific data there is on the topic shows no loss of bone density from this kind of schedule.  After all it's only 12 days out of the year.  He also recommended that I begin 2000 IU of Vit D daily, but my Vit D level was very low.

There are other precautions you should take when on frequent steroids and one of those is a routine eye exam at least yearly to check for early cataracts.  The article I wrote up on Steroids will be on the Health Pages soon, I hope.

Quix

[savagek]

I had the 500 MG IV Solu-Medrol once a month when I was first diagnosed with MS for several months.

I have also got the 1000 MG 5 day protocol when I have blowouts along with different symptoms.

This treatment has really helped me throughout with only mild skin irritation but is well tolerated. As for the metallic taste, they usually have some rootbeer barrel candies which really do help. If you like rootbeer flavor give them a try.

Are you on other medication or did your Neurologist suggest any medication?

Rob