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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Prednisone
        
(Message started by: beachmusic on Mar 19^th, 2008, 7:42am)

Title: Prednisone
Post by beachmusic on Mar 19^th, 2008, 7:42am

My name is Mary Ann and I am actually petrified to make this post but in my heart of hearts I just I have to.

Plz don't yell at me!!!

Let me go ahead first of all and say I'm sorry it's going to be sort of long...

[smiley=twocents.gif]

It is regarding my overwhelming fear of prednisone and the long term damage it can cause to our bodies. I of course have to say that I do realize that it is one of the most powerful drugs that doctors have available and without it millions would die and or suffer tremendously. So please know that I do realize its value in the treatment of many things including cluster headaches.

That being said, it is actually listed on my fathers death certificate and I personally know that it is what killed him. He took low and high doses of this medicine for approx. 6 years which barely put a dent in an incessant dermatolgical condition then proceeded to fracture every bone in his poor ole body. And I do mean every! The last 2 years he was warned repeatedly, but he was itching like a madman and begging for anything to stop it. Well it didnt' stop it but it did stop him!!!

My mom with COPD, while this drug has kept her alive and her lungs going an extra an 15 years they have rendered her bedridden and psychotic, she has been in and out of the hospital at the minimun 40 times during that period, she has broken many bones due to severe osteoperosis. She has been unable to heal from any all surgeries since 1997 due to this medicine because of severe tissue damage. (Any and all surgeons refuse to get near her with a 10 ft. poll even if it means her dying, due to tissue dammage) All this info is quoted to me by her doctors "long term steroid use and the toll it has taken on her body" She has a hernia in her abdomen the size of a basketball that has been there since 98, no doctor will repair. Not that I blame them. But of course she does!

Anyway, I know everyone here is already quite familiar with prednisone and its benifits and dangers. Also I know I am overly frightened while I realiize this drug has its place and we clusterheads often have no other options but I just want all of us to please consider carefully the long term consequences of frequent/prolonged or high doses of steroid treatment.

I see it said here often that we all need to beware of the medications. For any that don't, or maybe need to hear this, Well, I am screaming this one out!!! I myself over the course of my 50 years have already taken atleast 10 or more medrol packs for the odd and various things that I probably didn't even need. Add two pred. tapers for the clusters. I told the doctor "No MORE for this girl period." I hope that I can stick to that.

Again... Sorry Sorry Sorry for this long winded post!!!

Title: Re: Prednisone
Post by brewcrew on Mar 19^th, 2008, 7:54am

And I hope you never find yourself in need of it again. That said, prudent and infrequent use of it has probably prevented a few disasters around here.

It is, indeed, a double-edged sword.

Title: Re: Prednisone
Post by beachmusic on Mar 19^th, 2008, 8:04am

Obviously I am thrilled it has prevented many a disaster and helped so many.
Unfortunatly it didn't help me a bit. But who knows I am sure I had the wrong dose, wrong length of time etc etc....

Title: Re: Prednisone
Post by brewcrew on Mar 19^th, 2008, 8:09am

The benefits, when done right, can be truly astounding.

And the side-effects, when done wrong, can be absolutely horrific.

Title: Re: Prednisone
Post by Guiseppi on Mar 19^th, 2008, 10:20am

Never be afraid to make a post! The worst that'll happen is we scream and yell at you and run you out on a rail!!!! ;)

I agree with you, it's a scary powerful medication. We pick our poisons around here, understanding almost nothing you take in your body is without consequence. I should undoubtedly cut down my beer, wine and liquor intake, I should excercise more and eat less fatty fried stuff!

Like Brew said, prednisone has saved a few people from going off the deep end...the really really black dark deep end, when nothing else would give them a break. But it is not without some potentially scary side effects. Good time to remind us all "never increase, decrease, start or stop a med without consulting with your doc."

Sounds like you've had a tough go of it, hugs your way. [smiley=hug.gif]

Guiseppi

Title: Re: Prednisone
Post by beachmusic on Mar 19^th, 2008, 10:46am

Thanks Guiseppi, I needed that!!! Big hugs to you!!! [smiley=hug.gif]

Title: Re: Prednisone
Post by alan on Mar 20^th, 2008, 11:14pm

Thanks for your thoughts on prednisone. I'm currently taking a very high dose and it scares me but it's the only thing that busts my clusters and I can't imagine living with the pain they cause me. Over the past 25 years I've tried just about everything and it is the only thing that works for me (90% of the time - this year is an exception)

One thing that was recommended by a doc was to get bone scans to monitor any changes in bone density....

Sorry about your parents.
Alan

Title: Re: Prednisone
Post by superhawk2300 on Mar 20^th, 2008, 11:44pm

I myself, and I know of a few others, that pred has no positive effect on our CH.

I agree with your post and intend never to take the stuff again!

Title: Re: Prednisone
Post by Ace on Mar 21^st, 2008, 10:22am

I was on the drug at 30mg for a year...an I can tell you that it is the most horrible drug there is.

Granted, I did not have one headache while I was on it but behind the scenes it was affecting my mental stability, my sugar, my skin and blood vessels.

When it came time to come off of it, despite tapering, I endured the worst 2 months of my life.

My CH re-established itselt and I spent 1 month on the couch in terrible pain as the cluster headache re-established it's place in my body.

Prednisone is nasty and can kill you. Stay away from it.

I take 2 excedrin migraine in the morn' and 2 in the evening along with 6 sudafed. This seems to work at preventing my headaches most of the time.

Take care!!

Title: Re: Prednisone
Post by vietvet2tours on Mar 21^st, 2008, 11:18am

on 03/21/08 at 10:22:37, Ace wrote:

STFU

Title: Re: Prednisone
Post by brewcrew on Mar 21^st, 2008, 12:16pm

on 03/21/08 at 10:22:37, Ace wrote:

Prednisone is nasty and can kill you. Stay away from it.

Shut up. You have no fucking idea what you're talking about. I'll say it again:

Quote:

The benefits, when done right, can be truly astounding.

And the side-effects, when done wrong, can be absolutely horrific.

Title: Re: Prednisone
Post by Bob_Johnson on Mar 21^st, 2008, 12:31pm

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
--------------------------------------------------------------------------------
This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

We have a member whose Vizsla would have died from a systemic fungal infection without a med. The problem is that this med has serious and frequent side effects--but there were no treatment options.

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects.

Title: Re: Prednisone
Post by EstieSA on Mar 21^st, 2008, 1:15pm

on 03/19/08 at 10:20:09, Guiseppi wrote:

Never be afraid to make a post! The worst that'll happen is we scream and yell at you and run you out on a rail!!!!

You have that right !

Title: Re: Prednisone
Post by beachmusic on Mar 21^st, 2008, 3:58pm

Small wonder I was worried about starting a post about prednisone!!!

Suffice it to say as I thought I did, The drug definetely has earned its place in medicne. Be it humans or animals. Many would suffer or die needlessly.
BUT like I stated many life threatening problems are also created that we need to be most concerned with.
Add to the host of other problems I listed previously related to my mother she has complete and total out of control diabetes due to the steroids which has resulted in the loss of a limb, she is presently in ICU due to bleeding internally from three tears in her stomach which the doctors again blame on the steroids. Again no surgeon will touch her to repair.

All I can say is that of course we were all thankful for the years it kept her alive and somewhat more comfortable but dear god, her quality of life the last 15 years is beyond hell. And I am at a loss as to what to make of this drug!

To anyone whose response is STFU well, maybe I need to exit this board.

Title: Re: Prednisone
Post by Charlotte on Mar 21^st, 2008, 4:04pm

beach music, if you look again, you will see the quotes from Ace and the shut ups were directly addressed to him.

Don't be sensitive. Don't take something personal that is addressed to someone else.

You know you get our support and we care about you.

Charlotte

Title: Re: Prednisone
Post by beachmusic on Mar 21^st, 2008, 4:19pm

Sorry I guess I don't get the quotes thing, and I know!!!! for a fact I am way over sensitive these days.
So please accept my apology if I overeacted, Still somwhat stunned at the harshness no matter who it was directed towards.

Title: Re: Prednisone
Post by Guiseppi on Mar 21^st, 2008, 4:39pm

We unfortunately have what are called "Trolls" on this board. People who join boards like ours, who don't suffer from CH but try to stir up problems on boards. Yes. a very patheitic existence. Ace is one of those. He deliberately posts false and misleading tips. So when he posts, you'll see some very violent atacks directed his way! ;)

YOU on the other hand, are to stay on this board, continue to ask questions, and we will help you any way we can. It's what the board is for.

Guiseppi

Title: Re: Prednisone
Post by thebbz on Mar 21^st, 2008, 4:59pm

Potter is right. You would do well to take his point.

Quote:

To anyone whose response is STFU well, maybe I need to exit this board.

If ole Ace get relief from sufafed and Excedrin bully for him. Some would think that is ridicules. I do. Some have no problem calling a rock a rock.
Take is easy there Mary Ann.

thebb

Title: Re: Prednisone
Post by beachmusic on Mar 21^st, 2008, 5:27pm

Giant Hugs to all you nice folks for making me feel better [smiley=hug.gif] [smiley=hug.gif]. I am way way too sensitive and I KNOW it.

I don't know anything about trolls though. You learn something new everyday :)

Got my o2 delivered last night though, non rebreather mask with the correct liters per minute and everything. AMAZING, the guy even said he was at the Richmond convention delivering for some of you folks. My cycle started after that unfortunatly!
It took em long enough but without your directions I never would have known what to ask for. Certanly not looking forward to needing it but I am anxious to see if it works.....

Thanks again, I need you folks!!

Title: Re: Prednisone
Post by Guiseppi on Mar 21^st, 2008, 5:41pm

Well hoping it proves the magic bullet for you that it has been for me. The most important point is to start it right away. A delay of even a few minutes, for me, means I'll ramp up as high as a 5 before it shuts it down. That's why I have bottles everywhere!

best of luck with it.

Guiseppi

Title: Re: Prednisone
Post by thebbz on Mar 21^st, 2008, 5:45pm

Yep hit it quick like the sarge said. Try a few dry runs to practice.
all the best
thebb

Title: o2
Post by beachmusic on Mar 21^st, 2008, 6:44pm

so even if it feel just like shadows and your not sure your really getting a cluster give it a go? do you breath it until headache stops completly or is there some kinda timeframe or limit that it becomes too long?

Title: Re: Prednisone
Post by Guiseppi on Mar 21^st, 2008, 6:49pm

If it don't work within 15 minutes I give up. There is no harm with going longer, as Batch will tell you, it takes many many many hours of huffing pure 02 before you start worrying about problems.

Try it for knocking down shadows, it works for me. 1 caveat, I tend to get repeat visits if I use ONLY oxygen. I pop a cafergot when I start the oxygen. 02 beats it down, the cafergot keeps it away. Many have posted success drinking coffee when they start their 02 and they get the same result. You might want to shoot down a cup of coffee and fire off the 02, see if the 1-2 combo works for you. An enrgy drink would accomplish the same thing.

Guiseppi