What is the shortest amount of time you've had between needing sets of steroids?
Background:
I only started showing symptoms in March 2019, and I've been lucky that they are still pretty mild (mostly just occasional tingling and altered sensation, with some swallowing difficulty and increased constipation), so I'm still learning the ropes. Because I'd felt like my symptoms were creeping back up, I had 5 days of solumedrol in mid-July (without a whole lot of noticeable change after), but a couple of weeks ago, I started to feel like my tingling was more frequent again (though still with some fluctuation from day to day)--at least as bad as it was in July. Can I really need steroids again after less than 2 months, or could I just be overreacting to normal variation (perhaps spurred by extra stress)?
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FuzzyBoots
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have never been on any so i don't have any idea about them ...things do act on one day and maybe not the next it is just different kinds of things ...talk to your doctor about what is going on ...best kind of medicine is talking to a doctor...
Welcome to this forum, FuzzyBoots I was on methylprednisolone when I was first diagnosed, way back in 2006. I was way over 40 at the time, and I remember that my neuro said that I could be on it for a short time, and it would alleviate my symptoms ~ fatigue, slight foot drop, and pins and needles on all my extremities. It worked wonders, and I took it monthly, for 18 months, like clockwork. It was administered via an infusion and it would take about 2 hours. I was also on Copaxone. We are all different and we all react differently to the many approaches available to manage 'ms'. I would talk to your medical professional to have their opinion. Again, welcome and Keep Smiling
Hi FuzzyBoots ! The only times I’ve had steroids were as part of the protocol of an infusion. Most of the time I have the same old symptoms that just ebb and flow. I was diagnosed in 1999 and likely had this beast 10 years prior without paying attention to it. I have only had one big flare up that I wished I could have taken steroids for but was in the midst of switching neuro’s so couldn’t make it happen and didn’t want to go to the ER.
Welcome! I’ve only had one gram IV post-op for relapse prevention. I did have 3 of the 5 day PO packs, 1 and then 4 weeks apart, but that’s a long story and wasn’t all for MS.
I did steroids when I had my 1st relapse it was an infusion Then last year I having trouble with my legs I was having trouble bending them so Dr gave methylprednisolone pills for 7 days. Two weeks later I ended up in the hospital because I had lost the ability to walk.
My earlier sets of steroids had been mostly okay (once I had to teach a class on Day 4, and I felt like a rockstar!), but this most recent time (2 months ago) I realized those mood changes are no joke! Plus, I had detail-oriented work I needed to get done that week and I couldn't scrape together the focus!
I have had Solumedrol in 3 and 5 day doses and am now currently on 250 mg monthly just before my Tysabri infusion. I was told by my neurologist that solumedrol is extended release, so it could take up to a couple of weeks to work. If your symptoms are coming back you should definitely consult with your doctor. Something to consider is that there are many reasons your symptoms are coming back. All of these (plus some I'm sure I am forgetting) will bring on a relapse; stress, infection, heat, cold, insufficient sleep, overdoing an activity, lack of exercise, your diet, depression, and even the changing of the seasons.
I hope you find a solution and find balance in treating your MS. It has probably changed your life, but I found having a positive attitude worked wonders in helping me adjust. Just know that you are not alone, this forum is the most supportive that I've found.
Hi FuzzyBoots! I, too, have been recently diagnosed, last October. My neuro set me up with a 5 day Solumedrol appointment pretty quick. This appointment was about half helpful. I was still having some trouble with walking at that point, but I was getting stronger. I was also *very* hungry after my sessions!
My next meeting with Solumedrol happened after I had a seizure at the end of the year. What a way to ring in the new year! I had less side effects from the steroids this time that I recall, though that may be after effects from my first seizure.
This puts the time line between my Solumedrol infusions at less than three months.
I am now on Mayzent, and that seems to be keeping me fairly stable.
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