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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Coming off Prednisone
        
(Message started by: ChristineL on Sep 7^th, 2002, 7:13am)

Title: Coming off Prednisone
Post by ChristineL on Sep 7^th, 2002, 7:13am

I seem to be having more side effects coming off the Prednisone that I did when I was taking the full amount and I was wondering if anyone else had this problem.

I am now on 10 MG every other day until I finish them. I think I have about 6 pills left.

I am having bad leg cramps in my calves, dull achy headache (not Ch's) that has lasted 3 days, nausea and just a general lousy feeling. The doctor has started me on Verapamil - 120 MG twice a day to start as I finish the Pred and will up the dosage next week.

Any idea on how long I will feel so lousy? I have to go away on a business trip tomorrow and hope I don't feel like this the whole week I am away.

Chris L

Title: Re: Coming off Prednisone
Post by Melissa on Sep 7^th, 2002, 12:26pm

Christine...

From my experience, the lousy feeling stays with you, until you go off the pred. altogether. That's just MY experience with it, for others, it might be different. Sorry! :(

Take care,
:)Mel

Title: Re: Coming off Prednisone
Post by justin on Sep 8^th, 2002, 11:17am

yeah it depends how much you take for how long, but i always have a few days of trouble going off the prednisone. knees and back are the worst. my body swells back up the day i drop down to one or half a pill a day (10mg). i only do 40mg a day at full strength for a couple weeks while i wait for the verapamil to kick in.

good luck. it will only last a few days. call you doc if it doesn't get better

jd

Title: Re: Coming off Prednisone
Post by riavaigh on Sep 8^th, 2002, 1:34pm

why were you taking Prednisone? I get mad when I hear that people are taking that drug for other than Rhumitoid Arthritis or Nerve disease because it's a very tricky and hard to get off drug. Doctors seem to prescribe it for many things. I have two family members that were on the drug. It took them a long time to get off of it and yes it caused them more grief when they began weeneing themselves off. Good luck and be careful.

Title: Re: Coming off Prednisone
Post by riavaigh on Sep 8^th, 2002, 1:38pm

I'm sorry I forgot..their symptoms were, pain and severe swelling and weight gain that stays with you until you're off and for months after. Both of my family members were never able to lose the weight even after quitting but both of them suffered from illnesses that made it hard for them to get around. Maybe you'll have better luck.

Title: Re: Coming off Prednisone
Post by Ueli on Sep 8^th, 2002, 3:08pm

Ria, are you sure you have Cluster headaches? If you have, you never must have gone above a Kip #4. Otherwise you would understand why some people trade in a few Kip #10's against the side effects of Prednisone.

PFNADs
Ueli

Title: Re: Coming off Prednisone
Post by kim on Sep 8^th, 2002, 7:54pm

Be careful...although I have heard of the reprieve provided by proper use of prednisone, I used it during a cycle (about 10 years ago) and I HATED it. Not only did I hate it, it fucked me up and it did not do diddley for my clusters.

If something is fucking you up to the point that bugs you more than the ch, then ditch it. There is much more available.

I've been through cycles in the past 10 years WITHOUT pred. I don't miss it, never did.

If it helped, and you feel good with it, GREAT. If it fucks with you, then don't blink an eye when ya ditch the crap.

Kip 4 - Kip 10 - whatever. There's LOTS of meds out there. Pred is not ALWAYS the ace in the hole. :)

Title: Re: Coming off Prednisone
Post by riavaigh on Sep 9^th, 2002, 12:03am

yes I have been having Clusters since I was a kid. Unfortuneatly, I have other health problems that prevent me from being able to take many of the medications out there but the reason why I would never take Prednisone is because I've seen what it has done to people who have taken it. Family, friends. I just think it's important to be aware of the longterm affects. Why do you feel it's neccessary to judge ones level of CH? I find that to be strange and anyone who suffers from CH as well as migranes should be able to seek help or support w/o criticism.

Title: Re: Coming off Prednisone
Post by ChristineL on Sep 9^th, 2002, 7:12am

Kim,

The Pred did help a lot. My occurances dropped dramatically as did the severity of the ones I did get. It did not however break the cycle so now I am on Verapamil while I finish the last of the Pred.

The leg cramps in my calves have passed as has the nausea but the nagging all over headache lingers. Mostly annoying more than anything. I am taking some extra strength Tylenol which helps.

Thanks for your help. Only a couple of days more and I will be finished with the Pred. Now I just have to work on getting rid of the extra 10 pounds I gained. ;D ;D

Chris L

Title: Re: Coming off Prednisone
Post by kim on Sep 9^th, 2002, 5:55pm

ChrisL, :)Glad to hear the pred helped you out. I'm one of those cluster patients who seems to have had almost as much trouble with meds as with Clusters ;D

Hang in there!

PS: Have you seen Jerry Lewis lately? I wonder if he's on Pred :o ;D

Smiles,
Kim

Title: Re: Coming off Prednisone
Post by Slammy on Sep 9^th, 2002, 6:00pm

on 09/09/02 at 07:12:34, ChristineL wrote:

Now I just have to work on getting rid of the extra 10 pounds I gained. ;D ;D

Chris L

Hey Chris......

need any suggestions? ;D

Slammy 8)

Title: Re: Coming off Prednisone
Post by ChristineL on Sep 9^th, 2002, 10:25pm

Kim,

Jerry Lewis is on Pred actually. He mentioned it on the telethon last week. Thank goodness I don't look that bad.

Sammy.

I am sure I know what your suggestion would be - know any volunteers?

Chris L

Title: Re: Coming off Prednisone
Post by Marcos618 on Sep 11^th, 2002, 4:42pm

Well I am at the end of tapering off Pred. I was doing 60 Mg for about 5 to 6 weeks. Yes it might be bad for you, but I just want to make it through this life time with as little pain as I can. I'll worry about the other stuff like side effects later. I also produce kidney stones about every 24 months. So when it comes to pain I get it often from different directions.

From what I was told Pred strips Potassium from the body. To prevent leg cramps I was to eat two to three Bananas per day while on it. I did get a few leg cramps and each time I would think back and see that the day before I had eaten only one or no bananas.

Hope this helps.

Title: Re: Coming off Prednisone
Post by justin on Sep 12^th, 2002, 10:06am

prednisone is the only thing that will stop the HA. the side effects are annoying but when i need a few weeks off every month (i'm chronic all year round) i just suck it up and do it. this time around i had a lot going on at work and was not able to cope with 4-5 ch a day during work. i needed a few weeks off. i've had them and feel better. i'm weening off the prednisone again now and waiting for the CH's to return. but i did enjoy my little PF vacation. what can i say. i wasn't going to quit my job and go on disability. i'd rather be uncomfortable for a few weeks. everytime i've done the prednisone i can handle it better. think it's just mental preperation. although it affects my relationships greatly which is a bummer too. ihave trouble relating to people. but it's better than CH. really. for a few weeks. if some people's cycles only last 5-6 weeks i see no reason why prednisone is a great way to go. i just found the lowest dose that works 40mg/day to keep the effects low and it has been ok for me.
so anyway. why does it work? and why can't we use that info to make a safer med that does work and cures us all? research research research people. we need it. we need to fight for it too. good grief. ok i'm out.

jd

Title: Re: Coming off Prednisone
Post by riavaigh on Sep 12^th, 2002, 3:08pm

everyone's different. What works for one person, may not work for someone else. One person may have terrible side effects to a drug that another person takes without having hardly any. It comes down to you and your body. There are a lot of drugs out there, it's just finding the right one for you.

Title: Re: Coming off Prednisone
Post by notseinfeld on Sep 16^th, 2002, 6:08pm

I'm a Justin mirror it seems. Prednisone is the only complete relief I receive and also for about a week. The approach is different as I attemp (futily) to break the chronic cycle with 80-60-40-20-10 taper routing only to have the CH revisit at the end. A week of sanity and no virtually no pain is worth whatever side effects come with it--and for me they're few.

FWIW--having another Botox consult tomorrow with my ex-girlfriend, the physician who administers Botox to patients and to herself for intractable migraines. Guess a new thread will be coming soon.....

nots

Title: Re: Coming off Prednisone
Post by ChristineL on Sep 17^th, 2002, 2:45pm

Well I have gone off the Pred and have been on Verapamil for about 10 days. I was on Altace for high blood pressure so the Verapamil has replaced that and is doing 2 jobs. Keeping the CH's away and lowering my BP ;D ;D ;D. So far so good.

Chris L

Title: Re: Coming off Prednisone
Post by jmorgan52 on Sep 23^rd, 2002, 3:22pm

I agree with notseinfeld. Pred gave me relief for 5 days at the most. I tried the taper down and the full on 60-80mg a day many times and every time the same thing, some relief for about 5 days then it stops helping so it's back to the tried and trusted imigran injections (not sure I really trust them but they get rid of the pain in 10 mins).

Also I feel doped for the time on the pred and my work accuracy can't be gaurenteed, but the week off pain is worth it (maybe) and I can at least function.

Title: Re: Coming off Prednisone
Post by catlind on Sep 23^rd, 2002, 5:00pm

Prednisone is a powerful and dangerous medication and shouldn't be taken lightly. I was on it for 8 weeks, and yes, it did break the cycle. Prednisone actually takes over for your kidneys producing corticosteroids. One of the dangers of the medication is that when you go off it after any length of time longer than 2 weeks, your kidneys may not start producing their own corticosteroids again. If that were to happen you would be dependant on pred for life. In addition, some of the side effects of prednisone include renal failure and diabetes. Both irreversible. I won't presume to tell anyone whether they should or shouldn't take the drug, but I would advise everyone who does take it to research the medication thouroughly.

Coming off the pred was hell for me. And I don't care to ever go on it again. CH's won't kill me, prednisone can.

Cat

Title: Re: Coming off Prednisone
Post by riavaigh on Sep 23^rd, 2002, 9:09pm

I have recently done research on Predisone. Doctors perscribe it for many diseases including Rhumetoid arthritis, Polyps on the vocal chords, nerve disease, and for CH as well as for other minor illnesses. I also asked my local Pharmacist why they perscribe this drug to so many people for so many different things, as it it an Anti-inflamitory. His answer was, "I don't know". I'm also not just talking out of my ass here, I know a lot about this drug., and I also know some of you think the pain out weighs any side affect but what if that meant DEATH? Would that be better? I've lived with pain for a pretty long time and compared to what some burn victoms go thru, CH isn't shit so when ya think about it, aren't we just being girl thingys? Plus, there are safer drugs.