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Subject :Big Guy about to start steriods..
2008-02-12 22:22:09
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| kgoodfellow |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey folks
I'm about to start treatment with cortico steroids and was thinking about doing a regular blog to give updates on the benefits and side effects that I experience along the way.
Is anyone interested in that? |
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K. Goodfellow |
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Subject :I'm interested!!..
2008-02-19 11:24:52
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| sethsmom |
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| Experienced |
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Joined: 2007-03-24 09:44:07
Posts: 26
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ME ME ME!!
I'm still on the fence about putting Seth on steroids. It's hard to ask a little guy if they feel better because they don't quite have perspective yet. You on the other hand have lots of perspective.
Don't worry, I won't be using your experience as a guide for my son, but personally, I'm curious as to whether the physical benefits (stamina, etc) outweigh the physical negatives (weight gain and mood swings).
Of course, maybe for a true depiction of that part we should be asking your wife to contribute to the blog :lol:
Kris
PS I hope you see the improvement you are looking for while on steriods |
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Subject :..
2008-02-19 11:59:19
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| kgoodfellow |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey Kris
I've already started treatment and I think I'm going to make posts about every week or so summarizing what has happened so far.
I'm not married, so you're stuck with my perspective. :)
My experiences may not be applicable to your son, since everyone is different, but it may help you decide if/when to start steroid treatment.
Kevin |
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K. Goodfellow |
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Subject :..
2008-03-19 03:20:37
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| Roxanne |
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| All Star |
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Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada |
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Hey Kevin, I'm also curious about this treatment.. We're not thinking about putting Nicholas on steroids yet but you never know what tomorrow will bring. Please let us know your experiences thus far. :) |
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Roxanne Mom to Nicholas (10) with BMD |
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Subject :blog location..
2008-03-27 12:05:18
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| sethsmom |
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Joined: 2007-03-24 09:44:07
Posts: 26
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Hey Kevin did you ever start that blog? If so, what is it's address so I can go read it. Have you noticed a big difference in the past month since starting steroids? |
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Subject :..
2008-03-28 00:50:20
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey
I haven't started a blog, since there isn't much to report....
Things are going well and I'm not having any side effects right now except not sleeping very well. It tends to make you a bit wired and sleeping is harder. I get about 6 hrs of sleep on a good night.
I have noticed a slight improvement in my strength (maybe 10%) and the soreness I had in my muscles is gone.
Many of the side effects are long term and we'll have to wait and see which ones pop up. I'm taking Deflazacort, rather than prednesone, since it is believed to have fewer side effects.
Right now I feel that I should have started it earlier....maybe it would have prevented some of the muscle loss I've had so far.?
I can answer any specific questions if you have any....
Kevin |
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K. Goodfellow |
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Subject :question..
2008-04-17 10:32:25
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| Evans' Mother |
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Joined: 2008-03-26 04:43:09
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Kevin,
Hi do the drs. give you any time line for how long you are to remain on steriods? |
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Subject :..
2008-04-20 04:34:25
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| richieny |
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Joined: 2007-04-17 03:15:21
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Kevin, I have been on 20mg prednisone every other day for almost a year.Gained about 15pounds(more fat than muscle) a slight gain in hand and arm strength,legs feel weaker but it could be the weight.What dosage are you on. Richie |
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Subject :steroids..
2008-05-02 04:25:43
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| checkin |
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Joined: 2007-07-22 03:00:55
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Wonder if the one you can get without a prescription would help? They are supposedly more natural? and are supposed to cut bad fat if you eat enough protien and drink plenty of water? How is your streghnth doing? |
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Subject :..
2008-05-02 13:44:42
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Hey Folks
My latest update is that I've gained about 7 pounds and feel slightly more stable in my walking etc. I also have some more mild acne. The worst side effect so far is the affect on my sleep...I only sleep about 4 hrs a night and it is really wearing me down. I'm going to try and reduce the dosage a bit to try and reduce the sleeping side effects.
This is a trial for me to see if the drugs would provide me any benefit. So we're still trying to find a good balance of dosage and benefits (if any).
Kevin |
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K. Goodfellow |
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Subject :..
2008-05-03 10:39:04
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| richieny |
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Joined: 2007-04-17 03:15:21
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My sleep is also affected about 6 1/2 hours.Was able to sleep for 10 hours on weekends before starting. Richie |
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Subject :..
2009-05-01 09:08:04
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| kgoodfellow |
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| All Star |
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver |
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Here's the latest steroid update.
In the end I only saw about a 5%-10% increase of strength while on the steroids, while having to deal with the side effects like lack of sleep, puffy face, and weight gain. The lack of sleep seemed to be able to managed by reducing the dosage. I took the steroids for 8 months before stopping.
The latest development is that I have developed cataracts in my eyes. This is gradual cloudiness of the lens of your eye. It's like looking through a dirty window. It will get gradually worse until you can't see at all.
Steroids can speed up this cataract process (they don't really know the mechanism that causes them in the first place). Normally it occurs in older people and progresses very slowly, but steroids speed up this process.
The 'good' news is that it is able to be fixed through eye surgery to remove the cloudy lens and replace it with an artificial lens. That doesn't sound like fun does it?
So for me, if I had to do it all over again, knowing the end result, I'm not sure I would take the steroids. I just didn't see a large enough benefit for the side effects. I think how people respond will be unique to each person (not everyone develops cataracts) and maybe the rewards will be larger than the risks.
Anyhow, I hope this is helpful for those of you curious about steroids and/or discussing it with your doctor.
Kevin |
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K. Goodfellow |
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