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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Steroid Warning !
        
(Message started by: UN solved on Apr 9^th, 2007, 10:58am)

Title: Steroid Warning !
Post by UN solved on Apr 9^th, 2007, 10:58am

Just a friendly reminder:

When taking steroids, you should follow your doctors instructions EXACTLY. Failing to do so can result in hefty, permanent side effects or even worse :'(

The most common side effects can include any of the following:

Insomnia and mood swings
Sodium retention
Increased appetite
Increased fat deposits
Increased acid in your stomach
Increased sweating, especially at night
Increased hair growth
Increased sensitivity to the sun
Delayed wound healing
Decreased ability to fight infections
Thrush (Candida) growth in the mouth

But that's not all it can do to you. Some side effects may be permanent and/or devestating !!

FOLLOW THE DIRECTIONS OR YOU MAY BE SORRY !! :-X

Goodluck

UNsolved

Title: Re: Steroid Warning !
Post by SophiaK on Apr 9^th, 2007, 11:15am

Please please, make sure all of you taking steroids do your own investigating on the use of steroids.
I should have been taken off of them as my liver was dying. Make sure you get blood tests showing your liver function is where it should be. Through my own investigation I informed my doctor that I think I should be weaning off of them, (they weren't doing anything for ch) proceeded to wean, wound up in hospital, the doctors there took me off them completely, took blood tests and now I have a scarred liver. Other medication will also cause liver damage, just make sure your doctor does do the proper blood tests. Interestingly, psyliciben does not cause liver damage. :)

Title: Re: Steroid Warning !
Post by chrisw on Apr 9^th, 2007, 10:19pm

oh great,
now I have to worry about that also. will this crap never end? aaaaggg. >:(
chrisw

Title: Re: Steroid Warning !
Post by Samiam on Apr 11^th, 2007, 7:47pm

I've been on Steriods for well over a year and liver is fine and so is my adrenals which is what many really worry about. When taking high doses of steriods for long periods of time this can cause the adrenals to stop working and in crisis can product what is called adrenal crisis. That is why they taper and use it for short periods of time. Meaning anything over half of what a healthy Adrenal would make could cause your adrenals to shut down causing Addison's. Too much for long periods of time will cause Cushings. I've been on 20 mgs for over 6 months weaned down to 5 mgs which is what I have stayed on now. I needed the steriods due to adrenal fatigue and my body needed this to help with the cortisol.

When talking about the side effects it from long periods of use at high levels.

a week or two with a taper is not going to hurt you.

Sami

Title: Re: Steroid Warning !
Post by UN solved on Apr 11^th, 2007, 8:01pm

I'm not talking about taking steroids for purposes other than CH. A dose of 5 - 20 mg a day isn't much, and most likely wouldn't be considered a high enough dose to prevent clusters ... but for it to be effective for clusters, the doses are usually higher than that ( 40 - 80 mg per day to begin taper ).

For steroids to cause serious side effects, it doesn't take continuous use either. Too many 'bursts' can also cause serious problems ... Or doses too high, even if only for a week or two.

Believe me, I know ;)

PF Wishes ~
UNsolved

BTW, I don't care much for Prednisone anymore. I'd rather just have a Solu Medrol injection and catch a quick break ;;D

Title: Re: Steroid Warning !
Post by Superpain on Apr 11^th, 2007, 9:48pm

Reallly...
I've got a messed up liver. And I just did a taper. Perhaps I should discuss that with my doc next time.
Thanks for the info. :-/

Title: Re: Steroid Warning !
Post by Samiam on Apr 12^th, 2007, 9:19am

Just get a chem panel which will give a glims as to what is going on with your chemistry.

How long where you on the Steriods at high doses? A two week taper starting at 100 mgs if healthy shouldn't cause a problem unless your adrenals are not producing Cortisol at a good level.

Rule of thumb is if you take half of what your adrenals would make a day you wouldn't run the risk of shutting them down but giving them a rest.

I'm wondering if the reason I didn't get hit as hard as the years before was due to taking the Cortef everyday. Now this was't used for the Clusters but it still was in my system.

Sami

Title: Re: Steroid Warning !
Post by UN solved on Apr 12^th, 2007, 3:28pm

I already know it's hurt me. Docs say that it's eating holes in my hip joints/bones and that I'll end up 'falling and breaking some bones or ending up in a wheelchair' ) It has also affected my ability to fight off infections. It's not the length or dose that's caused these problems, it's the number of 'bursts' that I've done. :-/
But when I'm in cluster hell, I'll do whatever it takes to stop the attacks! Sometimes you gotta weigh the risks vs benefits. I knew what I was getting into all along ... and if I must do it again, I will. ( right now there's no need for me to do them :) )

UNsolved

Title: Re: Steroid Warning !
Post by pieface_49 on Apr 12^th, 2007, 8:33pm

Just like another post. We sometimes take the risks just to ease the pain. It is almost ludicrous, but here I sit not wanting to take Verap, yet I continue smoke and drink. Hmmm, what is the definition of insanity? No wonder my Neuro says "get the heck out of here" ::)

I sprayed corticosteroids up nose for many years. I wonder if that has anything to do with my CH today? Does not matter, it is more like what can I do to lesson the cycles and ease the pain.

Donnie

Title: Re: Steroid Warning !
Post by taraann on May 15^th, 2007, 6:14pm

Looking at my records and my teeth I have been told by my neuro to never ever do any more steroids. He said he can't imagine what my bones must look like and he suspects I must have ulcers also. Yep use steroids as a last resort. :-/ They are a great break but are they worth it, ask me in a few years.

Title: Re: Steroid Warning !
Post by Batch on May 16^th, 2007, 4:59am

If you're using corticosteroids like prednisone on a prolonged or repeated basis, your doctor should recommend a bone density scan and a consult with an Endocrinologist. As indicated in earlier posts, corticosteroids can do a number on your bones... They also whack the heck out of your endocrine system.

If you still need to take steroids, a post menopausal regiment of fosamax and hormone replacement may help... Ask your doctor.

Title: Re: Steroid Warning !
Post by MR_FLOOR on May 16^th, 2007, 4:27pm

Unsolved , what do you know about Decadrone.When I first went to Diamond Headache clinic they used to have a shot called Decadrone I was allowed to have them 3 times a year .And let me tell you it worked.Since then they stopped producing it it was for something else and it was proven not to work(for whatever that was)so they stopped making it [smiley=huh.gif]Boy I wish they still had it nothing cleared up my cycle better then that shot.

Dave

Title: Re: Steroid Warning !
Post by UN solved on May 16^th, 2007, 7:28pm

Decadron is a steroid also. It is still available in the US as far as I know. It is safe to do them under a doctors supervision of course ... even if that means more than 3 times a year.

If Decadron is not available to you for some reason, a suitable alternative would be Solu Medrol (Only available at hospitals or some doctors' offices) or Medrol Dose Paks.

Goodluck

UNsolved

Title: Re: Steroid Warning !
Post by swimchica623 on May 17^th, 2007, 12:10pm

People react differently to cortisteroids. Your body is not really smart enough to know why you are giving it this medicine...I've been put on prednisone/salumedrol/decadron/what have you severeal times to get me breathing again due to my severe asthma and as a blessed side effect gotten a nice break from CH. Since I go on it so frequently for asthma and the CH never really stops, I've never gone on specifically for CH...but it still works.
However my asthma buds and I discuss side effects and its different...depending on how we can control cravings for salty foods, alter diets (I know what foods to avoid to stop water retention and what to eat to make it not too bad). Sure I get horrible side effects still, especially when I was steroid-dependent for quite some time. I look like I gained 200 pounds from all the stretch marks, took actonel when I was 18, had horrible moon face, gained 30 pounds...I'm much better now but I never dealt with other issues like blood sugar level issues, a big camel back lump.....cortisteroids are strong medicines and all medicines come with side effects. When its a matter of breathing or not breathing, I don't have a choice. I gave in for one of the first times just reacently to take some to catch a break during a particuarly nasty time right now for CH. But if you are finding differneces with each other's side effects, its not your doctors ignoring you...your doctor saw you were in significant pain and wanted to help...it would be amazing if this group of medicine came side effect free....there are things you can do to help make the side effects a little better (women can go to the spa and get that hair waxed off! highly recommended!!!) but....if you are desparate, you are desparate!!!!!

Title: Re: Steroid Warning !
Post by UN solved on May 17^th, 2007, 2:41pm

I'm sorry to hear that you also suffered from side effects. I was just wondering ... did you know about the potential side effects before you had them ?

This thread was not to discourage others from using steroids to combat CH ( because I often do it myself) ... it's just to make them think about and know the potential risks involved. People should know the medications they put into their body and not just take them blindly. Then you must weigh the benefits against the risks.

PF Wishes

UNsolved

Title: Re: Steroid Warning !
Post by swimchica623 on May 17^th, 2007, 3:41pm

Well for me I'd have to separate the short term side effects from the long term side effects. At first I would have bursts that were very far apart...I was younger too so I reacted a little differently. Like when I was 12 the doctor told us it would probably make me hyperactive and all I did was sleep!! I think I ate more and craved different foods too, but it didn't really change my weight since I was younger and your metabolism is different, and it was a shorter time too. When I was steroid-dependant (as in about 2 years taking 10-20mg every day, along with bursts of salumderol in the hospital averaging 240mg...usually 60mg every 6 hours and tapering from that for a few weeks to a month) I was 18-20 and the side effects got worse. I knew what to suspect but I honestly didn't have any other choices. This year, I have had more stable asthma but I caught a nasty infection in Sept and have had a few bursts of prednisone which have given me little breaks, except tapering off is always no fun! But I have been on it enough I know the foods to eat lots of to avoid damanging my body more, and the foods to avoid completely. There are some things that its gonna do to you no matter what you do, but you can ease the side effects....I guess that's one benefit to being on it a whole lot!!!!
But yes, doctors should tell you about side effects. The ones you listed however usually come with very heavy usage. If you are on a burst you will probbaly feel cranky and hungry if you are an adult. I think it took monthly bursts over a period of 4-5 months to start showing SOME long term side effects, but not near as bad as it got in the long run.
Everyone is different though so it is important to ask your doctor always about side effects but don't get too scared about what you read either, from my own "i am not a doctor just a patient who has talked to other patients experience" it usually takes a LOT of prednisone to get some of the serious side effects going!
Lisa

Title: Re: Steroid Warning !
Post by taraann on May 20^th, 2007, 1:31am

Just yesterday I went into the dentist to have two teeth pulled. After an hour and ahalf of the teeth cracking and breaking every time he tried to pull them because they were so soft I had to have dental surgery to remove the teeth. All told I was in the dentist chair for two and a half hours (and my insurance only covered novacaine so wahh poor me lol) but back to my point, ... I blame this on the steroids. But on the other hand steroids were my only savoir many many times over theyears so like I said earlier, do I regret taking them, askme in a few years. I really guess it depends on the condition of my bones in the future.