Hi all,

I've been on Prednisone for going 2 weeks now, I started at 80 mg a day for 7 days then dropped 10mg a day for 1 week then off. My Nero is doing this to break my cycle and so far it has worked wonderfully except for these damn side effects. I was awake for the first 6 days and they gave me a sleeping pill that made me vomit for 2 days and didn't even get any sleep. Now I'm taking Ambien and have had 2 night sleep. But now my body doesn't fit me anymore, it feels like I'm out of sync with the world my heart is beating like crazy and I keep losing my temper. I can't decide if its the tapering off or just the side effects ramping up. Any advice would be helpful, if anyone has had these experiences and they go away or ??? whatever. I'm liking the no CH's but I cannot live with these side effects I almost hate to say it but  at least when I dance with the beast there is an end and I am myself again. These side effects just keep going no escape.

Thanks,

~James

Prednisone can sometimes make you want to eat your first born or your sedan. Good old constant hunger
It can make you look like a water retentive teenager with acne. Good old Moon face
It can certainly mess with the sleep and messes with moods.

Have you tried melatonin for the night?
Many have gotten at least the nights back by using this suppliment. The research suggests that anywhere from 6-24mg (talk to doc) prior to attempting sleep can start functioning as a preventative.

It gave me a year free of night attacks (still had them during the day but was better rested and coped better because of that)

Good luck and don't eat the honda

E

Hi James,


Inventive_Mind wrote on Jun 7^th, 2009 at 2:20am:

at least when I dance with the beast there is an end and I am myself again.

Boy I heard that.  

First let me say that I've never done a pred taper so I have no idea how it would affect me. Meds affect people in different ways.  At the end of the day we each have to decide which beast is worth living with.

Like Eric said,
Quote:

Good luck and don't eat the honda

 ;D  I'm sorry but that is funny...

Good luck...

-Dennis-

The only bad side effects I have noticed when doing the pred taper thing is when I am tapering off I get severe joint pains for a few days.

Hey James,

I started a Pred treatment beginning of this cycle (seems like Months ago - wait - that Was!)  NEVER again.  I had all the bad side effects, no relief for clusters.  It did not help me at ALL.  I was on melatonin while I was on the Pred, so I was able to sleep after the first few days or so, but very late at night each night, though I took the pred by 5am or 6am every morning.  The other side effects DID go away soon after I stopped the last drop of pred - I think about 4 or 5 days after I started feeling "normal" with pain again  ;D it was great.  No more extreme back pain, mood swings, - it ALL went away.  AND I will NEVER do it again.  
I was told I should try Occipital Nerve Block - It has steroid in it - NO I will NOT touch it!  NO WAY >:(  

But you should feel "better" soon!!   ;)  Stick with finishing the taper, as I understand it can get much worse if you quit it cold turkey...    :-/
How much longer you have left of taking the taper?

Val

I've done the prednisone taper maybe a dozen times. Stopped the hits in their tracks while I was on it, but never broke a cycle. I used it to stop the pain while my other preventatives built up to theraputic levels.

Side effects included slightly increased appetite and a higher energy level. The worst one was that I wanted to choke the living shit out of anybody who whined.

LOL the hunger I didn't even mention that one. I have gained 30 lbs in the last 3 months since being on the new meds, good thing I drive a Jeep. ::)   have 3 more days on the taper and hopefully a broken cycle (We'll see) thank you for your support every word helps.

~James

I've had at least 7 courses of prednisone (one of the courses was for a severe asthma episode I had back in 2003 that almost put me in the hospital).  None of them have been for any longer than a week.  But, I have a had at least 2 instances where I ended finishing a prednisone taper, only to be put on a new one a week later, becuse my CH came back full force.  I've had major CH attacks while on prednisone too.  As it is, when I first took prednisone for CH, it did a pretty good job of stopping the cycle.  But over the past 2 or 3 cycles, it's been less effective - within a week of finishing prednisone, the CH came back full force.

For me, the prednisone side effects are cool - not!!:

the increased appetite

feeling like I'm scatter brained

for the first half of the taper regimen feeling like I'm on speed and not wanting to sleep

irritability to the point of just about foaming at the mouth during the first half of the taper

the major case of the blues I have when during the last 2 or 3 days of the taper (my mom also has this side effect when she has to take prednisone for bee stings)

Im having amazing fun on the Pred at the moment, currently up to 120mg, I had a shouting match against 16 people (all good mates) today for absolutely no understandable reason, i just completely lost the plot (totally unlike me). Im also enjoying being unable to think in any sort of reasonable fashion, very helpful as im currently doing exams at uni! The fact that i just ate 3 pizzas as well is a little concerning, i will soon have to roll myself back to the doctor! lucky its downhill! But seriously, the side effects are NOT GOOD!

p.s. 120mg seems much hire than most, anyone got any thoughts? interested to hear / learn as always!

Luke PFD

I ate like a freakin pig 24/7. I just set up all night pissed off and hungry.  It did absolutely nothing for me I'm still dancing with the beast for 4 months now, But I did get my O2 today wohoo.

All Prednisone did for me was make me cluster-free for the days I was on it and gained about 15 pounds of water weight along with those munchies you all speak of.  After I was done, the clusters came back, but even worse.  Never did it again.

120mg Prednisone...   :o

Keep a close watch on the family jewels...  taking that much prednisone for too long is very hard on the endocrine system and could cause shrinkage [smiley=yikes.gif]

And a nice set of man boobs.
he.he.he ;)

I like it, sounds better and better, Manboobs, streamlined crown jules!  just asked the doctor if he would prescribe this much Pred for his own son. His silence preceded me telling him where to shove his prescription. Back to the Neuro!

Luke

prednisone is the only thing that kicks cycles for me

ive done dose packs at low levels, ive even done infusions 1000mg thruogh an iv for three days then a dose pack

im currently on 60 mg for a week then 40mg for a month

the family jewels, i could care less id give them up just so id never feel this pain again

as far as side affects . . . . . . .

steroid rage, i always get it, i turn into the biggest not a very nice person,

hunger, i weigh 135 and i could eat my body weight lol

no sleep 3-4 hrs a night is an average

my best advice is to definately take with food stay well hydrated if the effects bother you much

maybe ask your doctor if he would reccomend splitting the dose thruought the day

im takeing  3 20mg tabs a day right now, first day or two i take 1 every hour or so with a snack and sum water then i take the fu;ll dose at once the rest of the treatment

luketd wrote on Jun 9^th, 2009 at 8:07pm:

Im having amazing fun on the Pred at the moment, currently up to 120mg..... p.s. 120mg seems much hire than most, anyone got any thoughts? interested to hear / learn as always! Luke PFD

Boy things have changed about dosing over the years. 15 years ago I did the 30mg x 3 days, 20 mg x 3 days, etc. Then 5 years ago went to the #1 Cluster doc at Mayo in Arizona and it was 50 mg x 5 days, no tapering. Where in the literature are they recommending anything greater than 50 mg per day? 120 mg? That's outrageous!!!!

just started the prednisone "dose pack" today along with verapamil, 80mg twice a day.  From what ive read here that doesnt seem to be enough??  should i take more verapamil than what the dr. prescribed??  my dr. seems kinda uneducated about clusters, even though it is a "headache clinic".  he asked me if i wanted pain killers, i laughed at him, and he was taken back for a second.  im paying out of pocket right now, so seeing another specialists will hurt financially.  

Pred was a miracle drug in my book but short timer for sure. Stayed on too long, year and a half. Had to rebound three times as they said my adrenals didn't 'wake up'. The weight gain was disheartening, as was being the first in my entire family to have high blood pressure. But looking back, I can say you have to expand the ideas of time~ meaning, a year afterwards, two years afterwards~ it takes time when you introduce something like this to 'get back to normal'.
The main advice I have given folks on it is watch the BP, watch your sugar levels, and educate yourself on adrenal function.

Hi Mike,
I am unable to comment on the prednisolone dose pack since I don't know what dosage the doctor prescribed. I seem to remember when I was on it starting with 40 mg per day for a week and tapering off from that.

80 mg twice a day for verapamil seems low for CH, so you might need to educate your doctor that 240 to 480 mg (or more) is needed. If you have not used verapamil before, the doctor may just be being extra cautious (because verapamil lowers your blood pressure and affects an EKG).

Best thing to do at this point is monitor your blood pressure and pulse for several days and show your doctor a log. Then if 80 mg X2 per day is not helping, he will feel better about increasing the dose.

I have been on 180 mg X2 per day for the past month. My doctor said he wanted to start with that, didn't want to be responsible for killing me. My blood pressure when I started was around 160/100 (high) and pulse around 90. Now it is around 135/85 and pulse around 70. Verapamil isn't helping The CH much though so I am planning to ask the doctor to increase the dosage.

Doc Goadsby uses:

Quote:

Steroids Corticosteroids are highly efficacious and the most rapid-acting of the preventative agents. But caution must be exercised in using them because of the potential for serious side-effects. Treatment should be limited to a short intensive course of two to three weeks of tapering doses. We start patients on oral prednisolone 1mg/kg to a maximum of 60mg once daily for five days, then decrease the dose by 10mg every three days. Unfortunately, relapse almost invariably occurs because the dose is tapered. For this reason, steroids are used as an initial therapy in conjunction with preventatives, until the latter are effective.

Don't confuse prednisolone with the Medrol dose pack (methelprednisolone), the dose pack is much stronger.

James,

I weigh 155lbs. In '05 I was put on a long taper starting at 80mg/day. Within the 1st week I became my alter ego. Also had the racing heart.

After the long taper, the side effects did leave me. One of the dangers of steroid treatment is phsycotic reactions, and I am an example of that. My Neuro said, "never again at 80mg for you."

When stopping the prednisone it is very important to do so slowly, very important.

Hang in there,  Don