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Joined: Mar 07, 2007 Posts: 107 Location: Toronto, Canada
Posted: Wed Mar 26, 2008 11:22 am Post subject: Rite of passage
I had my first solumedrol drip today. I had a relapse over the weekend - vetibular ataxia. My first definite relapse since diagnosis last year. Yippee
I am getting the drip for three more days. The nurse told me about some side effects but they didn't seem to match some other ones I've read about, so I'm curious to know what your experiences on it were.
I did not enjoy the taste of it and I am trying to avoid high sodium food, which is really tough.
Being only a year in, I really thought I wouldn't have to do the steroid thing for at least another 5 years.
Joined: Sep 30, 2007 Posts: 120 Location: Charlotte, North Carolina
Posted: Wed Mar 26, 2008 8:17 pm Post subject:
Punchy,
I had the drip last year when I had my first exacerbation - double vision, nystigmas, and veritgo. I didn't sleep much and put on about ten pounds. On the up side my back never felt better.
Posted: Wed Mar 26, 2008 9:00 pm Post subject: Re: Rite of passage
Punchy wrote:
I am getting the drip for three more days. The nurse told me about some side effects but they didn't seem to match some other ones I've read about, so I'm curious to know what your experiences on it were.
I've had IV solumedrol twice. The first time was in response to the attack that led to my diagnosis. The treatment was followed by an oral prednisone taper. It helped to clear up the optic neuritis that I had at the time though my vision remained heat sensitive for about a year afterwards. I found that I had to take cooler showers than I was used to and also had to stay out of the heat which was kind of difficult since I was living in an area that experienced 110-115°F summers. The second time I had IV solumedrol was in response to some new symptoms that I was experiencing. These were outpatient and weren't followed up by a prednisone taper. There was a delay in the scheduling for the treatment and I didn't get treated until about 3 or 4 weeks after my symptoms had occurred. It might have been too late as I felt that my immune system was a ping pong ball going back and forth and so on. For example, I got an opportunistic infection in the cuticle of one of my fingers which was oozing pus. I almost never get infections of this type so I felt that it was in response to the IV solumedrol. I had to go on antibiotics and that cleared it up but left my stomach a bit for the worse. I also had a brief panic attack during this second treatment. I was on the phone and my mind was racing with a number of somewhat random thoughts that I just wanted to blurt out at the same speed which they were occurring in my head. It was all I could do to just keep my mouth shut and listen to the person on the phone and not verbally assault them with the rapid fire circus that was going on between my ears.
I have had three courses of high dose IV solumedrol - 1gram per day for 5 days each time - no oral taper.
The worst symptoms I experienced were emotional lability - rage, crying, poor verbal impulse control etc (this was a bad one at work), lack of sleep, bright red and hot flushing of the chest and face (very burning and itching), and feeling very jumpy and nervy. Good benefit was that all my non-ms related aches and pains (backache, and cartilage-related arthritis in my knee) eased for a while!
Best of luck - hope the relapse subsides quickly.
The after effects from steroids only lasted about a week, then some yo-yoing type immune-related responses for a bit longer - kind of feels like the 'cascading' of your immune system when you feel a relapse coming on... _________________ Ali
Have had five IV solumedrol sessions, five days IV with oral tampering for about 2-3 weeks to let the body get back to normal.
Salt in your food should best be avoided, that is if you do mind becoming like a baloon... As for sugar, best avoid that as well, so your blood doesnt raise its sugar levels to much. As for that I d say its not so bad, just let your body know that once solumedrol is in your blood, its recovery time!
THe most important I'd say is after about 2 weeks into the solumedrol medication, your ability to fight infection will somewhat be abit lower, so just be aware to stay away of infections people (vrochitis, pneumonia), and bad habits and you ll be ok.
PS. Drink lots of milk, chronic taking of solumedrol is not that kind for your bones .... _________________ an action brings..... a reaction !
Joined: Mar 07, 2007 Posts: 107 Location: Toronto, Canada
Posted: Fri Mar 28, 2008 7:35 am Post subject:
Thanks guys! I've had two infusions so far, with the nurse arriving for the third in about an hour. Two more to go!
My vertigo is mostly gone now, thank goodness, but these steroids have knocked me on my arse.
The infusion I had at the MS clinic took about only 20 minutes and wasn't so bad, but the one the nurse gave me at home yesterday took close to two hours; it was quite painful and I was quite sick. My veins are very small and don't like being forced so my arm aches for hours. I am taking 1 gram and some saline. My face blew up for a few hours after but seems back to normal now.
This sucks! My IV is itchy, I have a constant headache and I smell weird!
Beats the relapse though - I guess
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