Steroids

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Loobie » Wed Jun 02, 2010 7:15 am

Every time I've had three days of IV Solu Medrol, I don't go to the hospital. The home nurse comes and I even went to work with the little IV 'ball' that you can put in your pocket. The nurse taught me how to disconnect when it was empty, I wrapped it up with that stretch, wrinkly tape and just went about my day. I did want to kill some people while on it though, but it went away in short order!
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Postby LoveActually » Wed Jun 02, 2010 9:42 am

NHE - I love the description about causing them to commit suicide. LOL!

Lew -Hilarious! I'll probably have that same feeling (wanting to kill someone) while on it.

I'm lucky in the fact that I don't really have issues with insurance. We have military insurance and they'll pretty much pay for anything as long as I have a referral. That's where it gets difficult.

At my Thursday appointment the NP that was setting everything up said they wanted to get me in for an MRI asap! I've checked my insurance site and no referral has come through yet. Slackers! I called the neuro's office today and left a message checking on the referral and just confirming that they did indeed send it over to TriWest. 24-48 hours before receiving a call back is what they request. LMAO!

It's very unnerving hearing that they want something done asap and then you're sitting there waiting. Should I worry? Should I assume that maybe it's not that big of a deal and she was just saying that to make things move a little quicker? Very irritating.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby patientx » Wed Jun 02, 2010 9:58 am

LoveActually wrote:At my Thursday appointment the NP that was setting everything up said they wanted to get me in for an MRI asap! I've checked my insurance site and no referral has come through yet. Slackers! I called the neuro's office today and left a message checking on the referral and just confirming that they did indeed send it over to TriWest. 24-48 hours before receiving a call back is what they request. LMAO!

It's very unnerving hearing that they want something done asap and then you're sitting there waiting. Should I worry? Should I assume that maybe it's not that big of a deal and she was just saying that to make things move a little quicker? Very irritating.


Just a guess, but maybe the reason they want to do an MRI quickly is to see if there's a new lesion, and if it is enhancing. If the lesion shows enhancement, this is a pretty clear sign a relapse is going on. At some point though (a few weeks, I believe), the BBB will stop leaking, and the lesion won't show any enhancement.

Also, I believe I read somewhere that after a certain point during a relapse, the steroids won't do much. I don't know if this is true, and I am far from an expert, since I've never taken them myself.
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Postby JCB » Wed Jun 02, 2010 11:45 am

I am a diabetic (type one), I had a hard time keeping my blood sugars down with my first dose of Solumedrol. That was in '07 (diagnosed PPMS), a Year ago my Neuro put me on once a month Prednizone. I take 25 50mg tablets the 1st of every month. I do feel better after about three days. The metal taste is gone, I have more energy, my blood sugars are manageable and my face gets back to a normal color. By the end of the month, I'm more than ready for my next doseage. I do not suffer from ON just right side weakness in arm and leg. I guess my recommendation is to try a doseage and gauge the benefits you see for yourself. This MS monster is so different for all of us, I would reccommend jotting down how you feel your MS Symptoms are as you progress down this path. If you are like me, memory is like trying to hold water in your hands, it just slips out.

Wishing you the best
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Postby shye » Thu Jun 03, 2010 6:14 am

Trent-
sent you a PM
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Postby LR1234 » Thu Jun 03, 2010 7:20 am

On the point of steroids...just to let you all know I had a relapse which caused severe numbness in my hip/butt area. After a couple of months it wore off a bit but was still bad. A year later I had my first dose of steroids for a new relapse (the one that led me to getting diagnosed) and that was for weak arms/legs and L'hermittes, anyway the steroids also took away the numbness in the hip/butt area from the year before so steroids still can treat something way after the time (even if the dr's reckon it can't...thats just my experience anyway)
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PPMS v. SPMS v. RRMS

Postby Trent » Sat Jun 05, 2010 3:20 am

Can someone please define the criteria used to differentiate between these forms?

I see Zamboni said that PPMS didn't respond so well to CCSVI treatment.

I have never been given a firm dx, just progressing downhill for many years, but I did have just one attack which took me off my legs until prednisolone tablets put me back to square one. A current 5 a day course of 100mg has brought some improvement in strength, but I am very wary of the downside of steroid use.
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