about the lung function topic

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julie

New member
the lung function/hospitalization topic made me think about something and I am wondering if I am the only person out there who is questioning/curios about this....

Does anyone else wonder why patients with somewhat comprimised immune systems, or completely comprimised immune systems, like AIDS/HIV patients, are given certain anabolic steroids but they aren't even in an investigation state for people with CF? I don't want anybody to think that I am likening CF to AIDS because I am not, but the suseptibility of the patients with either condition is similar and Aids patients are given certain legal (legal if RX'd by a doctor) anabolic steroids to treat certain thing such as helping to keep on their body weight, keep their body systems (kidneys, heart, lungs.......) strong despite the aids. Studies show the anabolic use under the supervision of a doctor has prolonged their life and given them healthier times to live.

Mark and I are always asking his CF doctor about any anabolic CF studies that might be in the works, nothing yet...... anybody else ever thought of this, curious about it, talked to your doctor about it?
 
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JazzysMom

New member
Yes I have thought of this. Mine actually began with a friend who has MS. When he was on such steroids it made a world of difference in all the aspects that I could benefit from. I never persued it because I "assumed" that if it was of benefit to me that my doctor would have addressed it. Of course that was when I was young & foolish. Since I am old & wise now I will address it with my doctor at next months appointment. Of course now that I am old I hope I can remember to! LOL!
 
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WinAce

New member
I find it all the more amusing given how they'll readily prescribe prednisone, Megace and other <i>cortico</i>steroids (poisons, if there ever were, which can screw up everything from your pancreas to your spine).

Heh.

AIDS actually parallels CF in some respects. Incurable, a select few are largely immune to it and live ages, expensive treatments can prolong your life, the lung infections...
 
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JennifersHope

New member
Well me being the steroid queen has to jump on this band wagon.... I take 30 mgs of steroids every day.. I do that because my adrenal gland is in failure.. ( addison's disease) and that is the treatment prescribed for it. Since taking steroids my lung function has improved greatly.. I mean greatly.My lung xrays show NO INFLAMATION .. I am to immunsurpressed to inflame.... I actually am overweight now.which is a bad thing... (bloated in my face and belly) and I have a great deal more energy.. I know that is what gets me through school... that and God....

I can do things that I only dreamed of doing before, I have a clearer mind to think, though I am still tired more then the average person. . Without steroids I would be dead within a few days because me body would go into shock...that being said...

As a result of steroids I have

Cataracts at age 30
Glaucoma
Osteoporosis
small vessel disease
angina
high blood pressure
diabetes
bone pain
and I am immunocompromised and open to more infections.....and I tend to be high strung.. it is hard for me to relax sometimes...

I don't have a choice to take them or not but if I did.. I am not so sure I would...It would depend on the quality of life I had at the time, I know because I have a better quality of life now I will pay for it down the road.. I have bone pain now I can't imagine what it is going to be like with 10 more years of steroid use.. to tell you the truth, the thought of being in pain scares me more then anything......Once you have experienced severe pain in your joints..you almost get a phobia of it coming back....

My two cents on steroids.. Only take them if you need a boost.. of a jump start.. or if you are going away and want to feel good.. One time I went to DIsney WOrld and they gave me a double strength steroid dose for the time I was there.. I opened and closed the park three nights in a row.. and only slept a few hours a night and still felt good.. Sort of a false sense of feeling good...cause when I came back down to my base dose I was sick as a dog.. but at least I enjoyed myself for a while...

Great question Julie.. I have often wondered why they didn't put end stage CFers on steroids myself.


Jennifer
33/Cf and Addison's disease.
 
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JustDucky

New member
Julie, that is an interesting topic...I have read that docs give HIV /AIDS folks anabolic steroids to try and increase their muscle bulk and improve their quality of life. I have never even thought about that with CF persons, many of whom have a terrible time keeping weight on and have other issues. I have been googling and looking on PubMed for some articles that would relate to anabolic steroids and CF. I did find one on Growth hormone and its anabolic effects on young children:
http://www.jacn.org/cgi/content/full/17/5/419

Here's an a article about COPD patients recieving anabolic steroids (males) in CHEST journal..I know it isn't about cystic fibrosis, but cystic fibrosis usually has an obstructive component to their pulmonary function tests. Emphysema and chronic bronchitis also fall into the COPD category. I couldn't find an article specifically designed for CF patients other than the GH shots given to kids...but that won't stop me from looking!!!

Here's the link to COPD and anabolic steroids:
http://www.chestjournal.org/cgi/content/full/124/5/1733

I hope this helps....I love to research, now I am on a mission (must be the old nurse in me LOL!)
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>JennifersHope</b></i><br>I don't have a choice to take them or not but if I did.. I am not so sure I would...<hr></blockquote>

Jeez, you've got a dozen balls in the air at once. Credit to you for being such a good juggler. I no longer take the rounds of prednisone they prescribe me -- or at least rarely take them. I palm the dope when I'm in the hospital and hoard it in the cupboard when I'm at home. It's the one area I brazenly fake compliance in. Maybe I should just come clean and stop living this scheming life as a reverse-junkie, but I don't feel like debating the issue in clinic, where they always seem to have the drop on you anyway. I've already lost one eye and half my bone mass to the 'roids, and your cautionary advice (and list of side-effects) is duly noted. Thanks.

Q
 
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anonymous

New member
You all are so misinformed. Again this is so dangerous to have misinformed, unread, unresearched commentary in the forum.

First, Anabolic Steroids are completely different than the Corticosteroids like prednisone. Corticosteroids are very bad and although they reduce the natural inflammation response in the body, they dramatically inhibit the immune system. Anabolic Steroids don't have this negative immune system response. So those who replied with comments about prednisone should seek to educate yourselves before you comment further.

Anabolics are used by AIDs patients to boost their immune system, improve weight gain through exercise and increased muscle mass. Anabolics also increase red blood cell count in the system. However, the reason CFers are not commonly if ever placed on Anabolics is because if they are improperly used (meaning if they are not coupled with other hormonal management drugs) they can severely damage the liver and testis. They can also have very adverse effects to a female's hormonal system. We CFers commonly have liver chemistry problems -some mild, others worse, and since Anabolics temporarily effect the liver, doctors are apprehensive to prescribe Anabolics for fear that our livers issues would get worse, or even more concerning liver chemistry could be permanently and negatively affected.

For those alpha personalities who are not risk adverse, Anabolics offer great possibilities, but again at a risk.

I have taken anabolic steroids, as have one or two male CFers in this forum. And as far as I know from our communication, we each have benefited significantly from the use of ANABOLIC steroids. We each have done so at our own risk, and by going to the "Black Market" for these anabolic products.

99.9% of doctors won't prescribe Anabolics for fear of the liver issues and also, knowing how to properly use Anabolics is in some ways an art form. One MUST know what combination of Anabolics to take to maintain a hormonal balance and to prevent irreversible hormonal side effects.

Male
34 with CF
 
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luke

Guest
Anonymous male,

I don't see where we "all" are so misinformed. I see most of the posters posting intelligently on the exact issue you have so eloquently "educated" us on. Before you throw stones on this forum I suggest that you create a user name a post like you have some yourself. Or maybe your testicle shrinkage won?t allow that. have a nice day....

Luke
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>You all are so misinformed. First, Anabolic Steroids are completely different than the Corticosteroids like prednisone....<hr></blockquote>

Try and keep up here, Male. I responded to Jennifer's comments about corticosteroids, which the previous poster had brought up as an aside to the initial topic. Do anabolic steroids prevent a person from holding two thoughts in his head at the same time?

Q
 
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julie

New member
Actually, the male 34 with CF is right on about the benefits and risks of the anabolic steroids, based on all the research I have conducted-which has been a crapload in the last 5-6 years.

My question was about anabolic steroids and not at all about cortisteroids like prednisone, sorry that was my own fault for not clairifying. Many CFers are already on cortisoteroids and they differ greatly from anabolic steroids, that isn't what I was referring to when I posted the question.

There is much truth to the adverse effects of the steroids so I would recommend that any male interested have their sperm frozen first, as most men with Cf already have reproductive problems and the anabolic steroids reduce the production of testosterone because of the synthetic testosterone provided by the anabolic steroids. This can cause long term problems.

There is also proper ways to cycle on and off anabolic steroids (similar to prednisone) but you should also take supplementation to combat the hormonal effects.

Anabolic steroids can cause a growth in the clitoris of a a female, it can cause deepening of the voice and other male like attributes. Even if used properly, this is why it is considered more problamatic for a female to use than a male.

AND Q, DO YOU EVER HAVE ANYTHING PRODUCTIVE TO SAY OTHER THAN TO ATTACK SOMEONE? YOU WILL SOON FIND YOURSELF OFF THIS BOARD IF THIS BEHAVIOR CONTINUES, I CAN ASSURE YOU OF THAT.

I am never for the annonymous feature but in this case, I would advise against anyone who uses anabolics to post any personal information as it is punishable just as illegal drugs are, and the word anabolic is monitored online.
 
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JennifersHope

New member
Hi,

I apologize that I was talking about the wrong steroids... but there is no reason to be rude.....I don't care if you don't leave your name but don't be so rude... A simple clarification would have worked... We are here to support each other not tear each other down...and if you can't do that nicely then don't post here...


Jennifer
33w/ CF and Addison's who appreciates respect. even when I make a mistake.
 
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JennifersHope

New member
Oh and Julie.. sorry to get off topic... Didn't mean to take away from your post.... I actually do not really know anything about anabolic steroids.... So I can't be of help...

Jennifer
333 w CF and Addison's
 
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julie

New member
There are a few different kinds of steroids so I should have clairified, I just didn't see the sense in pointing it out because it was stil along the lines of the initial topic. It's ok, I understand though... sorry it got a bit rude on here, that wasn't my intention.
 
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anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>julie</b></i><br>AND Q, DO YOU EVER HAVE ANYTHING PRODUCTIVE TO SAY OTHER THAN TO ATTACK SOMEONE? YOU WILL SOON FIND YOURSELF OFF THIS BOARD IF THIS BEHAVIOR CONTINUES, I CAN ASSURE YOU OF THAT. <hr></blockquote>

Julie, I'm all about peace, love and understanding -- and, of course, whiskers on kittens. (Let Those Who Police the Board note this for the record.) BTW, if you reade the thread, I was not only sympathizing with but also thanking Jennifer for her comments. Later, I objected to the tone of the poster who, for no good reason, shot both of us down -- and I wasn't the only one. Sorry if that's not "productive," but it's my story and I'm stickin' with it. Characterize me however you want.

Q
 
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julie

New member
Q, I am not referring only to this topic but to numerous others, including those that have been locked, in the past week or so.
 
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anonymous

New member
I was the aggressor and my anonymity was intentional due to the subject matter. I didn't necessarily mean to come across particularly rude, but I get impatient when CFers throw terms and reference drugs without really knowing what they are speaking about. There is already a taboo about Anabolics, which isn?t deserved, and keeps many from investigating their benefits of use. Again, particularly with this topic, Anabolics, when used properly are an amazing thing, but when they are stigmatized and considered synonymous to Corticosteroids many tend to throw the baby out with the bath water. And for those who are willing to take the risk of using Anabolics, and ideally not experience negative or permanent side effects, the possibility of an improved and extended quality of life exists. But like the poster states, Anabolics are definitely a risky proposition, and only more so when used by a CFer with our liver issues.

Sorry
Male

Don?t mean to sound like such an evangelist on the topic but these drugs have helped to improve and extend my quality of life.
 
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