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Topic: Afraid to taper Pred (Read 364 times) |
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LasVegas
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Afraid to taper Pred
« on: Aug 21st, 2005, 9:44pm » |
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I've read all the medical info re: Prednisone, the importance of tapering due to adrenal gland shutting down AKA potential clinical depression, effects of long term use, importance of diet and exercise, etc....
Most CH sufferers take Prednisone in hopes of aborting CH's while another preventative such as Verapamil is in the process of working. It can be common that once one begins tapering the dosage of Prednisone after a week or so, shadows and often CH's start up again because the other preventaive hasn't taken effect yet.
Based on the above, how many of you go back to upping the dose of Pred to avoid having CH's? If this applies to you, please share with us your personal experience....
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| « Last Edit: Aug 21st, 2005, 9:47pm by LasVegas » |
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unsolved1
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Re: Afraid to taper Pred
« Reply #1 on: Aug 21st, 2005, 10:20pm » |
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I use steriods all the time. And yes, the clusters always start again @ lower doses. I might up the dose of Prednisone every now and then. I know the limits though. I've done all sorts of steriods for these damn headaches. Had a shot of Decadron and a Medrol Dose Pak this week. You just have to know when to say when.
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don
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I dont up the pred.
I up the preventative.
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kcopelin
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Re: Afraid to taper Pred
« Reply #3 on: Aug 22nd, 2005, 9:43pm » |
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I don't up the prednisone-already have osteopenia from it. However, I have done up to four tapers during cycle.
kathy
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LasVegas
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Re: Afraid to taper Pred
« Reply #4 on: Aug 23rd, 2005, 12:36am » |
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on Aug 22nd, 2005, 7:09am, don wrote:I dont up the pred.
I up the preventative. |
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What I meant was....suppose the Pred was at 60mg and it's "time" to taper down to 40mg...now at 40mg the CH's come back....so while the preventative such as Verap is in the process (sometimes takes 2 to 4 weeks depending on individual and dosage) does anybody up the Pred back to 60mg and give it another week just to avoid the possibility of CH's? Seems like CH sufferers will try just about anything to get rid of them and short term use of Pred is not that risky, it's the long term use (years) that is considered risky. So hopefully that clarifies what I meant by "upping" the dose....any personal experiences to share?...
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| « Last Edit: Aug 23rd, 2005, 12:38am by LasVegas » |
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don
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It takes 7-10 days for verap to reach an effective level if you are taking an effective dosage.
What is your dosage?
Quote:| sometimes takes 2 to 4 weeks |
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If your dosage is not effective in 2 weeks then its not going to be at all. Your just spinning your wheels.
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| « Last Edit: Aug 23rd, 2005, 6:50am by don » |
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Lizzie2
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Re: Afraid to taper Pred
« Reply #6 on: Aug 23rd, 2005, 11:34am » |
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No upping of Pred here - or even taking pred at all.
I have avascular necrosis and had bilateral knee surgery in June to drill holes in the dead bone - I'm 24.
PT is going well, but pain hasn't really improved - I go back to the orthopedic on Monday to determine if the surgery was a success or if the next step is knee replacement.
I hate pred.  
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unsolved1
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Re: Afraid to taper Pred
« Reply #7 on: Aug 23rd, 2005, 12:09pm » |
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Give it another week? You really should talk to your doc about doing that.
I didn't mean to downplay the effects of steriods like Prednisone. Side effects can be permanent and/or serious.
plz talk to your doc
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The mad viking
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Re: Afraid to taper Pred
« Reply #8 on: Aug 23rd, 2005, 12:11pm » |
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taper pred with 5mg every 4 day
That should be safe
Your doc decide though
Svenn
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Kris_in_SJ
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Re: Afraid to taper Pred
« Reply #9 on: Aug 23rd, 2005, 7:44pm » |
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You're asking a tough question, Vegas.
If I remember right, you're doing this treatment long distance? Just make sure that your Verapamil is at a minimum 480mg/day. You should get moderate relief of intensity and frequency after 7-10 days at that dose.
You might get some increase in HA activity when you start to taper the Pred, but that could be temporary. Use your Trex or Oxygen for a couple days and see if the HA's decrease on their own.
Playing with Prednisone is something most of us simply don't do. Of all the drugs in our arsenal, it's probably the most unpredictable and certainly has the worst side effects.
Please be careful. Hugs,
Kris
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LasVegas
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Re: Afraid to taper Pred
« Reply #10 on: Aug 23rd, 2005, 8:37pm » |
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The Verapamil was 240mg sustained release Aug 6th-12th, then upped to 480mg on the 13th and hve been on 480mg since. The CH's for the most part have stopped hitting 3 major times daily pretty much as soon as I started the Prednisone on the 6th. But when I tapered a week later down to 40mg of Prednisone the CH's were hitting 3 times daily again...so that's why I upped the dosage of the Verapamil to 480mg which seems to be what is recoemmended for CH's therapeutic dose. Didn't have enough Pred from to taper properly as I was in fear of continuing 40mg and being hit...figured iof the OPred was working and avoiding CH's, might as well keep taking it and hopefully the Verapamil will kick in when i'm out of Prednisone. What I didn't know was the adrenal gland/side effects that could happen if not properly tapered off the Pred....so I got some more Pred last Thursday and upped it back to 60mg. Was fine for the whole weekend and then got hit about 2 hours after I went to sleep last night with a lingering 40 minute long CH that just wouldn;t go away. Normally the Imitrex inhaler works for me within 10 minutes, this time it took 40 minutes to subside. Now 6:30pm and I feel a shadow coming which always seems to turn into a CH within 5-10 minutes increasing intensity every second like an oncoming train. Going to get the Trex....hate this misery!!!!!!!!!!!!!!!!!!!!!! OWWWWWWW! No nasal congestion, just pain in the left eye, front temple, stiff pain in back of left side of neck, left ear.....SH!T!~!
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| « Last Edit: Aug 23rd, 2005, 8:42pm by LasVegas » |
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E-Double
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Re: Afraid to taper Pred
« Reply #11 on: Aug 23rd, 2005, 8:46pm » |
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Talk to your doctor about switching from sustained relase to Regular.
I think Dr. Goadspy even suggests this.
I started going to NECH and seeing Dr. Sheftell, after being on SR for the bulk of a yr. and dealing with my previous neuro. who just gave up on me, he switched the verapamil to Regular and though I still get whacked they have stabilized, are less frequent and for most part less intense.
Good luck!
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LasVegas
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Re: Afraid to taper Pred
« Reply #12 on: Aug 23rd, 2005, 8:59pm » |
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Thanks E-Edouble, good suggestion will search around for links/articles on immeidate release instead of sustained release.....
Time now 650pm and CH is gone....amazing how good the 3mg half shot of Trex works...stuff works best!!!! Going to make myself useful while I can....Gregg in Las Vegas
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Lizzie2
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Re: Afraid to taper Pred
« Reply #13 on: Aug 23rd, 2005, 9:47pm » |
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The regular release verap does seem to be key. After dropping my BP to a pressure so low that it was barely perfusing my vital organs (60/40...pulse 44) - I was switched to the regular release over at UMDNJ - I'd left Jefferson for awhile because I was pissed off and fed up.
I tolerate the regular release MUCH better!! This was awhile back when I was a senior at Penn State - I had been on 240mg Verapamil SR for a long time without any problems.
The problem came with the increase to 960mg - for me anyhow. I was throwing up all day long - couldn't even get up off the bathroom floor because I was so dizzy and the chest pains were so bad. The first time it happened, my roommate took me to the ER because my pulse was 3 times slower than it normally is. They basically just had me ride it out at that point, so I never went back even when I had 2 more very much worse episodes.
When I'd called my neuro regarding this, the message I got from the nurse was that my neuro said as long as it was helping the headaches, I should put up with the side effects.
That's ultimately what led me to leave for awhile and go see Dr. Gallagher and Dr. Rogers over in Jersey for awhile. 'Course I did come back to Jefferson 4 months later.................but now I'm more apt to speak up about such issues. Although there was that time I wound up unresponsive in the ER from a med reaction...
Be careful with meds....always be sure to at least be informed yourself. If we don't take care of ourselves, who will?
And yes - I'm a cynic. And a nurse. 
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LasVegas
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Re: Afraid to taper Pred
« Reply #14 on: Aug 23rd, 2005, 11:00pm » |
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Don't know what my normal blood pressure is, but the last 3 nights I have checked it and it is 136/80...abit high in general and very high for 480mg of Verapamil that is not even working. Maybe i'll change to the immediate release instead of the sustained release I am presently consuming.
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dodie
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Re: Afraid to taper Pred
« Reply #15 on: Aug 24th, 2005, 12:18pm » |
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I used Pred tapers for years and the only side effect was an appitite increase. It always stopped the cluster.
last year I tried it and tapered down twice and CH came back. Then Dr. put me on Topomax. I will never go on that again! although it helped. i am willing to try the Pred. again this time. Never had any other problems with it.
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LasVegas
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Re: Afraid to taper Pred
« Reply #16 on: Aug 26th, 2005, 1:31am » |
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Tonight was the 3rd night of Prednisone at 50mg instead of the previous two or so weeks at 60mg...haven't had any CH's since I wrote 3 days ago/a few posts scrolled above this one....will try and taper Pred at 40mg tomorrow...staying busy and being productive while I can...Gregg in Las Vegas
Anybody got a link to side effects or warnings of Prednisone usage...as it may speciifically pertain to CH's?
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| « Last Edit: Aug 26th, 2005, 1:32am by LasVegas » |
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docblondie
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Re: Afraid to taper Pred
« Reply #17 on: Aug 30th, 2005, 7:10am » |
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Hey Vegas!
Sorry to hear you're still having clusters while on pred. I would taper the high doses- regardless of the HA's and use the imitrex or other abortives for them. Maybe get in to see a neuro. to add another med. to combine with the verap. to see if you get relief. It's all about trying different combinations to see what works for you- Topomax and verap. may work for you. Also trying the IR of verap. may help too.
Best is to taper the pred.- going up and down is not good either- so taper off and try another round from the start to see if that helps.
Adding the topomax can help too- get in to see a neuro. to talk it over.
Hope that helps!!!
The cycle will end- hang in there!
~Chris
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LasVegas
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Re: Afraid to taper Pred
« Reply #18 on: Sep 2nd, 2005, 11:05pm » |
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Officially off the Prednisone, tapered down, up, and fuinally down again, total about 5 or 6 weeks. Feeling good though, Verap at 480mg/daily and no CH's or shadows in 1 week. Praying for 1 more week of no CH's and will taper off the Verap. Thanks for all the insight people.....Gregg in Las Vegas
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