Steroid question

[sher]

Is Prednisone or "decacrap" better for swelling after CK? I want to take the one that has the least amount of side effects.
Please help!
Sher

[sgerrard]

I would pick Decadron, because I didn't like Prednisone, but I think it depends on how you react to them.

Steve

[chelsmom]

Hi Sher,

I don't know which one has the least amount of side effects but my daughter Chelsea was on Decadron for a very long time.  She was on it before and after her surgery with a slow taper that lasted a couple of months.  Then when she started radiation (28 days) she was put back on this drug because she was so sick.  When they tried to taper her off a couple weeks after completion of her treatments she started to get really sick.  After 6 weeks of being off they put her back on a low dose of prednisone and it took about 9 months to get her off completely.  All the symptoms from being on the steroids cleared up after about 6-9 months later (moon face, weird weight gain in odd places, and an appetite that could make an NFL teams seem lady like).  Funny thing, she was sick this last week or so and said how she almost wishes she was on steroids again because she felt so good and could eat anything without worrying about it-her excuse would be "it's not my fault I'm gainning weight, it's just because of the steroids.  

I know everyone is effected differently by all that comes with this whole AN diagnosis and treatment.  Chelsea was lucky that she suffered only from the above mentioned side effects to steroids.  She never experienced the insomnia that some do or the crazy mood swings.  I don't know if any of this information will be helpful but I hope you find what's best for you.

[fbarbera]

I believe decadron is a much stronger drug -- so I imagine it has more intense side effects.  You can read about my experience with steroids in the "post-treatment" section of my site below.  Long story short:  they alleviate the symptoms but have really nasty side effects.  And yes, you will eat constantly and gain weight.  If you do choose steroids (and I understand why you would), try to start with small doses.   

[Tumbleweed]

I've never taken steroids for longer than a few days (during CK treatment), so most of what I can share here is second-hand information gleaned from conversations with medical professionals and from reading research posted online on Pubmed. If I remember correctly, a nurse practitioner on Dr. Chang's team at Stanford told me that Decadron was about 4 times stronger than prednisone. She also thought it caused more side effects. Of course, the difference in strength is mitigated if the dose (in weight) is modified so the therapeutic effect is the same (i.e., taking a dose of prednisone that is 4x larger than that for Decadron should theoretically have similar intensity of effect).

A lot of the side effects are avoided by taking a tapered dose, but others are less predictably managed. Besides the side effects that others have mentioned in this thread, prolonged steroid use can in rare cases cause avascular necrosis of the head of the femur (in plain English, failure of the hip joint) up to 60 months after discontinuing taking the drug. Also in rare cases, even a short-term course can cause psychosis, depression or other mental problems (Decadron made me feel panicky, which made my second and third CK treatments difficult to handle). But from what I've been told, the most common problem with steroids is that the patient can sometimes feel much more fatigued after discontinuing taking them than before they began. The bottom line is that you don't want to take them unless you really have to. But many people on this forum have reported having great benefit and no apparent lasting ill effects from taking steroids.

Best wishes,
Tumbleweed

[Tisha]

I've taken both, but in different strengths so it's not really comparing apples to apples I guess.  However, I took the deca one this last time, low dosage.  4 mg twice a day/3 days, then kept halving the dosage until 12 days were up.  After just the first dose, my hearing was almost back to normal...unbelievable.  However, I could tell it was getting worse as the 12 days were coming up.  Now, I'm not as bad as I was be fore, but I'm not that great.  Hearing is distorted.

I didn't have any bad side effects those two weeks other than not sleeping well.  I took a Sonata at night and got at least 5-6 hours straight sleep, then I'd be up for an hour or so, reading a really boring book, then would dose for another 60-90 minutes before up for the day.

No weight gain, no intense hunger.  I did have a lot of energy.  I was coming home after work polishing the silver tea set, taking everything out of my china cabinet and polishing it, taking the vacuum to curtains.  Sewing things, fixing things that I've let go for months/year.  I got so much stuff done in those two weeks.  LOL!  I almost miss that.

[Jim Scott]

Sher:

I haven't had much experience with steroids other than a 5-day, tapered regimen I was given when I was discharged from the hospital following my surgery. I don't recall any ill effects so I assume it was Prednisone and that the 'dose' was relatively low.  Because most potent drugs do carry the risk of negative side-effects, common sense would indicate that the milder the steroid and lower the amount taken would result in less negative side-effects.  This would favor using Prednisone to reduce swelling instead of the more potent Decadron.  I would posit that due to the strength and possible unwanted side-effects of steroid use, this is clearly a question for a medical professional to answer, but the experiences of other AN patients that have used Prednisone or Decadron are informative and should offer you some guidance when seeking answers from your doctor regarding the use of steroids.  I trust that this is the case.

Jim

[mk]

I was told that 40 mgs of prednisone, which I was prescribed is equivalent to about 10-15 mgs Decadron.  So I think it is more a question of dosage. From what I have seen in previous posts Decadron is usually prescribed for general swelling, whereas prednisone for hearing issues.
As everyone else mentioned here, the reactions to steroids may range vastly. My reaction was pretty much like what Tisha described: lots of energy, king of beeing on a "steroid high", some trouble sleeping (i.e. waking up at 4 am and not beeing able to go back to sleep). No weight gain or fluid retention, just the opposite actually, I lost weight and I felt dehydrated. And all my allergy issues resolved...

Marianna

[sher]

Thank you everyone for your posts. I will talk to my doctor again.
Have a great day!
Sher