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Topic: Indomethacin substituted for prednisone? (Read 622 times) |
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Major_Headcase
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Indomethacin substituted for prednisone?
« on: Dec 6th, 2006, 5:04pm » |
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Hello all,
In cycle again and working with yet another new doc. He has prescribed an indomethacin blast/taper in place of the usual prednisone blast/taper I've used in previous cycles. He was supposed to be up on CH but he audibly gasped when he found out I was taking 720 mg of Verapamil already (script from my previous doc). Thank god I had printed out some of the good info here on Verapamil dosages being higher ... he relented and allowed me a script for 840mg/day. But he wants me to try Indomethacin in place of prednisone ... Doc said it would start out at 3 times a day and then taper, I didn't catch the amount (haven't picked up my script yet, just left his office).
Has anyone else tried this? Does indomethacin work just as well as the Prednisone for early cycle relief?
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Bob P
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Re: Indomethacin substituted for prednisone?
« Reply #1 on: Dec 6th, 2006, 5:15pm » |
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Indo is an NSAID like over the counter Aleve. It's not a steroid.
Indo works well on CPH but does liitle for clusters.
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| « Last Edit: Dec 8th, 2006, 9:39am by Bob P » |
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E-Double
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Re: Indomethacin substituted for prednisone?
« Reply #2 on: Dec 6th, 2006, 6:48pm » |
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Unless he ius giving you a suppository at a very high dose it will not do jack.
If it does then you have ruled out CH as your condition.
Hope it works
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Major_Headcase
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Re: Indomethacin substituted for prednisone?
« Reply #3 on: Dec 6th, 2006, 8:50pm » |
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Bob P, E-Double,
Thanks for your feedback ... I was afraid of that ... I have a stash of prednisone I could take - but then I'm in the dilemma of not taking my new doc's advice/script. His parting words were, "Call me Monday if you haven't gotten relief." Thing is, my only child is getting hitched Sunday night and I would really rather not get hit during the ceremony (or afterwards, during Dad's big speech, lol).
When I searched on here earlier, about the only hits I got on indomethacin were for discussions on non-CH headaches. That tipped me that it was not a popular substitute for prednisone (or even an unpopular one).
New docs ... one of these days I'll find one who knows more than to simply poke a few keys on an electronic PDR. Thanks again!
"Oh bother!" 
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E-Double
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Re: Indomethacin substituted for prednisone?
« Reply #4 on: Dec 6th, 2006, 8:56pm » |
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Congrats!!!!
Don't sweat the attacks!
I got whacked 2x at my wedding.
Shit happens.
You excuse yourself and abort it then get back to business.
All good!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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BB
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Re: Indomethacin substituted for prednisone?
« Reply #5 on: Dec 6th, 2006, 9:17pm » |
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on Dec 6th, 2006, 8:56pm, E-Double wrote:Congrats!!!!
Don't sweat the attacks!
I got whacked 2x at my wedding.
Shit happens.
You excuse yourself and abort it then get back to business.
All good! |
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My hat off to you Eric for your "cant get me down" attitude !
You are an inspiration , truly .
Thank you
Annette
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #6 on: Dec 7th, 2006, 8:00pm » |
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on Dec 6th, 2006, 5:04pm, Major_Headcase wrote:Hello all,
In cycle again and working with yet another new doc. He has prescribed an indomethacin blast/taper in place of the usual prednisone blast/taper I've used in previous cycles. He was supposed to be up on CH but he audibly gasped when he found out I was taking 720 mg of Verapamil already (script from my previous doc). Thank god I had printed out some of the good info here on Verapamil dosages being higher ... he relented and allowed me a script for 840mg/day. But he wants me to try Indomethacin in place of prednisone ... Doc said it would start out at 3 times a day and then taper, I didn't catch the amount (haven't picked up my script yet, just left his office).
Has anyone else tried this? Does indomethacin work just as well as the Prednisone for early cycle relief? |
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I don't get this at all. Indomethacin isn't a substitute for prednisolone. They are as Bob says, entirely different drugs which work in entirely different ways on entirely different conditions.
It sounds like a desperate GP "throwing drugs at the problem" (although to be fair I have read of several people on here who like Indo- but who knows if they actually had CH or one of the similar Indo responsive headache types instead  )
A therapeutic trial of indo at the outset of CH is a brilliant thing to do as it can rule out other headache conditions and I personally think all possible CH sufferers should try it, very short term i.e. days to make sure it isn't their "silver bullet".
Major- The only trouble with using prednisolone, even short term and tapered as it should be used is that best advice says not more than once a year as steroids do debilitate your body and immune system. A really good option for a nasty cycle which won't stop, but not a long term or regular option ESPECIALLY if you are self medicating.
Assuming your are ECH? Have you tried:
- using the standard Verap (not slow release) in small, regular doses totalling 900+mg throughout the day with a higher dose at bedtime to block attacks?
- long-half-life triptans to buy yourself some sleep/relief?
-verap/lithium combo?
- not trying to block the attacks at all and just whacking them when they happen (my preferred route)
Wendy
P.S. I'm with Eric. I had to go to a funeral and wake when in cycle and rather than worry about having a attack, I took Frova 30 mins before it all started, stayed clear for 5 hours, then had an 02 tank in the car which I used in private while excusing myself to go to the loo. No-one was any the wiser.
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| « Last Edit: Dec 7th, 2006, 8:03pm by pubgirl » |
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stpp77
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Re: Indomethacin substituted for prednisone?
« Reply #7 on: Dec 8th, 2006, 8:48am » |
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Hi,
Makes no sense at all...Having both clusters and migraines. My clusters are episodic and I am not in cycle right now, but migraines are giving me a hard time(go figure--you get a break from one and the other goes). Anyways--I am on a taper of Indocin. I started at a pretty high dose 4 days ago, and have a very specific taper of this medication over the next few weeks.
Yes, the Indocin has made me pretty groggy, has helped with my migraine condition, but there is no way I can see it touching the clusters!!!
Take Care!
sorry edited to finish a sentence
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| « Last Edit: Dec 8th, 2006, 8:49am by stpp77 » |
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #8 on: Dec 8th, 2006, 9:34am » |
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Indocin for migraines is a new one on me as well
W
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stpp77
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Re: Indomethacin substituted for prednisone?
« Reply #9 on: Dec 8th, 2006, 2:16pm » |
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Sorry, should have explained better! I have migraines that cause anything from muscle weakness to hemiplegia and some other things...I am on a variety of preventatives, and we are trying this one with the others...Right now my last one caused hemiparesis (which is right sided weakness--also in a good deal of pain on this side from the weakness), and we are trying this in hopes of helping with everything going on in my body (I wish I could fully explain it, but it is still to new to me, I have only been dealing with this for the last 7 months, and just recently diagnosed). I have been in and out of the hospitals, in and out of acute rehab, and physical therapy).
Anyways, just trying to be helpful. Do tend to lay low and just read and not give much input, since I don't always explain things very well with everything going on...
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| « Last Edit: Dec 8th, 2006, 2:22pm by stpp77 » |
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Major_Headcase
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Re: Indomethacin substituted for prednisone?
« Reply #10 on: Dec 10th, 2006, 2:42pm » |
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I called my new doc back the next day and told him I just didn't have any faith in the indomethacin doing the job. I don't any doubt I have ECH, it's been "walking and quacking like a duck" since I got the crud in 2000. My doc was obliging and called in a script for a Pred blast/taper.
RE sustained release verapamil vs regular ... I've always used SR and never tried the regular. The RS has done the job in the past but maybe I should consider the non-SR? I'm taking 3 1/2 240/mg SR daily now (840mg total).
My son's wedding is about 4 hours away, I haven't been hit since I started the Pred so I think I'm in good shape for tonight ... 
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chopmyheadoff
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Re: Indomethacin substituted for prednisone?
« Reply #11 on: Dec 10th, 2006, 4:15pm » |
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pubgirl, you advise taking verapamil non sr in small regular doses. . .
surely this the same as taking the sustained release ones morning and night?
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #12 on: Dec 10th, 2006, 4:38pm » |
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Hope the wedding goes really well Mr Headcase!
Chop (I don't recommend by the way, I don't touch Verap, I am just passing on the latest best advice we have here from the London Institute of Neurology and what he have learned from talking to sufferers)
Sustained release works for some but for others where the sustained release doesn't the BP does and certainly the best advice here in the UK currently is to avoid the SR and take the regular BP in small, regular doses throughout the day with a higher dose before bed if you get the worst attacks at night.
There is a suggestion that the sustained release doesn't seem to keep the levels consistent enough for some people and they get "break through" attacks.
I am personally not a fan of taking Verap at all but if you need to it seems the regular BP gives more consistent results.
In addition, the doses can be FAR higher than are normally used for Verap in heart patients. Prof Goadsby calls the doses CH sufferers use "heroic" and he regularly prescribes over 1000mgs a day himself while recommending a max guideliine of 950mgs a day.
He does require ECG's and recommend regular dental/gum checks and Verapamil "holidays" every couple of years for CCH'ers, and reduction then total cessation for ECH'ers when they believe their cycle is over.
W
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| « Last Edit: Dec 10th, 2006, 4:55pm by pubgirl » |
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #13 on: Dec 11th, 2006, 3:04am » |
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Just been asked via IM about what I meant about gums so thought I had better post it here as well:
There are a few cases of long term Verapamil users starting to get gum bleeding and sensitivity problems. Prof Goadsby recommends keeping a close eye on the health of your gums and if bleeding becomes a problem, discuss coming off Verap for a while with your neuro.
If it is left, again long term, weakened gums can then cause you to have dental problems.
Hope this helps
Wendy
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chopmyheadoff
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Re: Indomethacin substituted for prednisone?
« Reply #14 on: Dec 11th, 2006, 6:01am » |
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hi wendy.
interesting read , thanks.
i saw professor goadsby and he never mentioned that about the sr.
i am on 480sr at the moment and it seems to be working fine for me.
ill be keeping a close eye on me gums though now 
thanks for the heads up
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #15 on: Dec 11th, 2006, 6:35am » |
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That's rather odd because it is Prof Goadsby who provided the Verapamil regime we suggest to sufferers and him who told us that the BP should be used in regular small doses, not the SR.
I'll ask Mike to ask him to clarify.
I don't think the gum problem occurs in many users but he expressly asked at our conference how many people had the problem and highlighted it as a possible side effect.
W
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| « Last Edit: Dec 11th, 2006, 6:37am by pubgirl » |
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chopmyheadoff
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Re: Indomethacin substituted for prednisone?
« Reply #16 on: Dec 11th, 2006, 7:32am » |
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sorry when you say "the regieme WE suggest to people" , who are you talking about ?
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LeLimey
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Re: Indomethacin substituted for prednisone?
« Reply #17 on: Dec 11th, 2006, 7:46am » |
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Wendy works on the helpline forOUCH UK chop, she has done more to help UK sufferer's in a practical way by finding out about employment law etc than anyone else has done. She is absolutely invaluable and one of my very favourite people. She works as a volunteer as I said on the helpline for OUCH UK and has forgotten more about CH and other headache types than I'll ever know, she's an invaluable resource and a bloody good friend and if that isn't enough she has excellent taste in wine as well! Me, Wendy and a case of Brown Brothers Dry Muscat and we'd take over the world
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chopmyheadoff
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Re: Indomethacin substituted for prednisone?
« Reply #18 on: Dec 11th, 2006, 7:54am » |
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on Dec 11th, 2006, 7:46am, LeLimey wrote:| Wendy works on the helpline forOUCH UK chop, she has done more to help UK sufferer's in a practical way by finding out about employment law etc than anyone else has done. She is absolutely invaluable and one of my very favourite people. She works as a volunteer as I said on the helpline for OUCH UK and has forgotten more about CH and other headache types than I'll ever know, she's an invaluable resource and a bloody good friend and if that isn't enough she has excellent taste in wine as well! Me, Wendy and a case of Brown Brothers Dry Muscat and we'd take over the world |
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oh noooooooooooooo
<== runs for the hills
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chopmyheadoff
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Re: Indomethacin substituted for prednisone?
« Reply #19 on: Dec 11th, 2006, 7:56am » |
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nice work pub girl
the world needs more people like you . .
just dont let that helen character rub off on you !! 
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LeLimey
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Re: Indomethacin substituted for prednisone?
« Reply #20 on: Dec 11th, 2006, 7:56am » |
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on Dec 11th, 2006, 7:54am, chopmyheadoff wrote:
oh noooooooooooooo
<== runs for the hills
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*sniff*
Ahhh... the distinctive smell of Northern Wuss if I'm not mistaken!
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #21 on: Dec 11th, 2006, 8:15am » |
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Sorry Chop, "we" does mean OUCH UK and "we" tend to follow what PG advises in most cases as he has treated more CH sufferers over the years than almost anyone and tends to be as up-to-date with current medical research and practice as anyone can be. (It doesn't mean that we think it is absolute Gospel and that there is no opposing view to be considered, just that he is always worth listening to!)
I will get Mike to query the BP/SR again though as it is really odd that PG didn't mention it to you as he has always been so adamant with us that the BP is better.
W
Cheers Helen. 
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Sandy_C
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Re: Indomethacin substituted for prednisone?
« Reply #22 on: Dec 11th, 2006, 1:12pm » |
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OK, Mr. Headcase, how was your son's wedding yesterday??? I hope all went well, he looked handsome, the bride beautiful, and that old Dad was able to give the first toast without getting hit. Please fill us in.
BTW, my very first ever CH cycle began in May 99, while planning my daughter's wedding, scheduled for July. At the reception, got my usual 8:30 PM hit, just excused myself for a short period of time, came back and had a blast. That was the last hit of that cycle, so I put the whole cycle down as caused by the "stress" of wedding planning. Right.
Since then, no stress to speak of, no wedding planning, but still get those damned CH cycles for the last 7 years! My other daughter is getting married next September. Somehow, that scares me, in more ways than one.
Sandy
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Major_Headcase
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Re: Indomethacin substituted for prednisone?
« Reply #23 on: Dec 11th, 2006, 6:06pm » |
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Sandy C. et al,
Well ... since you asked ... IT WAS AWESOME! The bride was beautiful, the groom (my son) looked damn spiffy - imho, and the ceremonies went off without a hitch. It was a low-key affair, held in a local restaurant (owners are friends of my son), and a crowd of about 60 or so witnessed the "plighting of troths".
My jaws ached from grinning so much by the end of the night ... and I am most grateful to report that "the Beast" did NOT crash the party! My little speech came off just fine (whew!) and the happy couple took a plane out of town today for their honeymoon (to that new tourism hotspot - the Dominican Republic ... not my first pick but they were excited about it and that's what counts).
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pubgirl
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Re: Indomethacin substituted for prednisone?
« Reply #24 on: Dec 13th, 2006, 4:12pm » |
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I DO love a happy ending 
W
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