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exasperated...a little by a new exacerbation and steroid treatments!!!!
i thought it was the heat and new sandals!, but, turns out is my second "incident." about a month ago, out of the blue, started feeling wobbly on my left side. since it has been crazy hot in dc and i had too much going on at work, home, waited until last thursday to see my neuro (who is very good and calming). yep, it's incident two on my journey...the weird left side trunk numbness (felt like a searing heat rash too), the foot drag (which is what finally clued me in to make the call)...all a new incident.
so on day 4 out out of for iv steroid treatment. not completely unpleasant, but time consuming. symptoms had begun to subside but he suggested steroids to speed it up. a little sad (was hoping would go a good LONG time w/o second incident)..but at least now: i "look like" i need the blue tag space and perhaps now i will get a cane for the occasional wobbles. my question for the community...have you found the steroid stuff worth it? i'm not a big fan of drugs, but this disease has changed that (on avonex). neuro doesn't suggest i change med course, but now have to get another mri (with spine and contrast--YUCK)...and i suggested physical therapy? so i can get some fashionable but useful can suggestions...:D we're going on a cruise in two weeks, so i'm definitely getting a cane as my balance and standing strength is wobbly..any cane suggestions? thanks!:winky: |
Welcome to the wobbly club Volada. :)
There are some peeps here with personality canes. I hope they chime in with their suggestions. As for the use of Steroids, I suggest only using them if your exacerbation is really bad and you either/or can't see or walk. Otherwise ride it out and perhaps change DMDs. :hug: |
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I am sorry that you are having an exacerbation, and hope things improve real fast. Cathy :) |
we're going on a cruise in two weeks, so i'm definitely getting a cane as my balance and standing strength is wobbly..any cane suggestions? thanks!:winky:[/QUOTE]
There is a man in Maine who makes exquisite canes. Maybe you could do a google search there. I am sorry but I can't remember his name. Cathy |
I use a cane all the time now. Just tired of people starring at me because I walk like I'm drink. :rolleyes: Even on "good" days I take it with me because I never know when I will get wobbly.
I won't do steroids. I just wait the flair ups out and so far I've come out of all of them within 2-6 months. My worst was 6 months. Shortest was 2......usually they are somewhere in between. |
I have to ask- what's the harm with steroids? I know bone density with constant use but, the 1 time I had 1gram x3 days I got so much done by lunch that I wish I felt that way more often. Taste was a lil bad but worth it.
I guess my question & yours should be..do the steroids help stop suffocation in our brains? Contrast's no biggie either. I get it every time. Ask if they can start a butterfly before you lay down if that helps with stick. edit- Actually a butterfly's no good cause not flexable. Would need to be what they start in me for Tysabri. |
[QUOTE=EddieF;793640]I have to ask- what's the harm with steroids?
Eddie, I honestly don't know why people feel that way because they do a lot of good too. I have used them in the past but my current use is because of dogs, and they do save a dog from dying when they have certain diseases. Cathy |
Steroids, like any medication, can be quite harmful on the body... of course, we also know how great they can be to help get us into remission fast.
Also, like other medications, the more you take them, the less effective they may be the next time. They are very helpful, and I know they were just phenomenal to help me both times I needed them. Each person's different, and each symptom's different. Some people are okay to 'ride it out', others need the extra help of the steroids. When I was lying in bed and could not feel my right leg at all (purely sensory - it 'worked', but it was if the leg had been chopped off - scary), I knew I was in deep doggie doo, and I needed help (IV Solumedrol, steroids) pronto. I didn't rush for them when I developed crushing pain in my noggin though... I went to a pain doctor and got a prescription that helps. I do know the pros/cons discussion over steroids is much more 'involved' than what I know of method of action of the medication, so I'm certain another will chime in with explanation. I hope you feel better soon and I hope that the steroids help you. :hug: |
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Cataracts Glaucoma Cushings Disease Diabetes Aseptic necrosis Osteoporosis The more you use steroids the less effective they will become. Steroids can be helpful and sometimes necessary but steroids DO come with risks. I have had 5 exacerbations and have only used steroids for 2 of them and the other 3 I waited out. I prefer not using steroids if at all possble. volada, I have two canes...I hate canes. If I use anything for balance and mobility I prefer to use Trekking Poles. |
Hi Ya Snoopie..:D :hug:
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Hey Sally! :hug: |
i can't speak to the steroids. i've thankfully never needed them.
plus i'm a diabetic and they send my blood sugar soaring. even a small amt of roids from back injections will affect me. i can't be without my cane anymore. i don't need it inside my house but outside need it. it also "tells" people that i'm not steady and to be careful. when you buy the cane the person will tell you how to use it. let's say it's your left leg that is off balance. when you put your left foot out you put the cane out and so on. i also have become fond of an ergonomic cane. it's handle is wider and conforms to your hand. since i can put a lot of weight on my right hand it helps disperse the weight and my hand/wrist doesn't hurt so much. i got mine on-line at Fashionable Canes. it cost more but to me it's worth it. have fun on your trip. |
Anyone know why/how steroid effects would become less effective with use? I don't why the body wouldn't return back to as it was after a month or 2 like when quitting hormones.
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Maybe if you would have more time between doses....more than a year??? |
Hi EddieF,
Like Sally, I am not sure why steroids quit working but, unfortunately, it does happen :( Steroids help inflammation and might help to shorten the length of a relapse but steroids do not change the outcome or course of the disease. |
I have had two high dose rounds of steroids about 5 and 6 years ago respectively. Both times caused havoc with my body, gave me fuzzy vision, high blood pressure, lost weight when I was underweight at the time, had to have insulin injections while in the hospital, the list of side effects was quite long. A year after these treatments, I stumbled getting out of my car and broke a small bone in my left foot. Turns out I had developed osteopenia, a precursor to osteoporosis. I had been taking Avonex during those steroid treatments.
After the 2nd treatment, I spent a night in intensive care from high blood pressure and chest pains. Now, I'm taking Copaxone, have been for almost 4 years total and I don't even get relapses anymore. I won't touch steroids now unless the symptoms are life threatening. I'm 53 years old now and this all started in my early 40s. I hope this is the last time you'll need steroids. I work full time now and go to online school at night. I no longer need the cane and only needed it during that time that I was taking Avonex and for a short time taking Rebif. |
Everyone's different surely applies here. I was 38ish the 1 time I had IVSM & it actually helped clear my vision a bit however, I remember saying to last neuro it might've been pressure behind or in? my eye which of course he didn't think to check for. Blood psi was no problem at all, I ate like crazy, maybe had a slightly shorter fuse for a week, and gave me tons of energy. The only downside was taste- everything tasted bad for the week.
Last month I took a medrol dose pack which was my 2nd time this yr and actually, it didn't help as much (swam 60 laps 1 day though) or make me as hungry as the 1st time I took the dose pack 3 months prior hmm. Or would I be worse had I not taken it? MS sucks thats's the bottom line. I too have both osteo's but density actually improved a bit since I took dose pack & IVSM. Vitamin D & testosterone are to thank for that 1. Study it. It's the main reason (I believe) why bones get weaker and of course muscles lose mass. |
I do not know how to use this site yet - so bear with me.
Does anyone know what a dose pack is? |
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A dose pack is a blister carded way to deliver a drug to the patient instead of loose pills in a bottle. (many OTC drugs are now blister packed this way.) Z-pak is an RX antibiotic in the same format for example. But most often dose pack refers to Medrol (methylprednisolone) which is a steroid. Prednisone also comes this way but less commonly used. |
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