Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
How long after an attack can steroid treatment be given? Is there a time limit before it would not longer be useful? How many times have you guys received steroid administration throughout the years after your MS diagnosis? I think I'm having an attack, but I don't have any insurance and I'm trying to figure out what to do. I know steroid treatment is super costly!
Given my chances over again I would not have had the number of iv treatments I did early on. I had flare ups every 3-4 months & was treated with the drip.
I would only ever have them for the eyesight as that is so important. As for the rest I would take time out to rest & let the body heal it self. It will take a bit longer but in the end worth it.
Some of the side effects I have is osteo-arthritis, moon face, massive weight gain that I can't lose no matter what. The worst was both feet have avascular necrosis. This basically means the bones are breaking down & wont support me & needed double fusions for hope to fix.
I had my left foot done a long time ago & fortunately recovered well. I had my right foot done last September & it was a nightmare before & after.
I couldn't walk on the right foot before surgery for over 12 months & was in a cam boot for 12 months. When I finally had surgery I had every complication possible & very slow healing which is from the cortisone.
The cortisone has also given me thin skin & wrecked my veins so for the hospital to find veins was hard & when after the surgery they needed to do blood tests every 2nd day the nurses (vampire squad) couldn't find the veins & I had to get the Dr's to do it. It took me 9 weeks in hospital/rehabilitation & lots more rehab after. I couldn't even put a shoe on the foot till about January for short times. I am finally walking all day in a shoe.
I am slow healing for any injuries & my skin is hard for needles of any type as it has been affected by steroids.
If I had my time again I would not have had the steroids by iv at all. Maybe the tablets low dose to get through the real bad one's but that would be all.
I could let you a lot more reasons not to use steroids & if your neurologist is straight with you they will tell you too.
Just don't jump to them for a quick fix, they speed up recovery but leave a lot of non reversible damage.
Remember I am only 52 & used to be very fit & walked lots before all the ms crap, now haven't been on a beach/bush walk for years & miss it.
Over 3 years I had 22 grams (22 doses) of IV steroids and ended up with severe gastritis, esophagitis and precancer at the junction of my esophagus and stomach from the acid reflux caused by the steroids. Please make sure your physicians are giving you a medication to protect your stomach during the course of the steroid treatments.
I also have low bone density in my lumbar spine and hips. I am 36 and was a very healthy person before my diagnosis - a marathon runner. I should never have a bone density as low as I do now. I have a real risk for osteoporotic fractures now.
The insurance I have didn't cover that, but they cost just under 50 bucks and helped shorten my relapses when I started taking them after noticing that I was in a relapse for 2 or 3 days!!!
Best of luck!
2nd Attack given the iv steroids, 5 days of a nurse coming out. Outrageously, expensive. Didn't do a thing for me, maybe even made things worse.
Doc then prescribed ACTHAR which is also outrageously expensive. ACTHAR made me relapse big time. I will never touch another Steroid again. They either don't help or cause me to relapse.
I have insurance but seeing the cost of these things is sobering. And the copay is still costly, to me.
Praying for insight for alternatives. I'm looking too at Candida/viruses etc... as possible root cause.