Cluster Chuck wrote:

Some of the stupid treatments (like attaching banana peels to your head) we are closed minded to, but otherwise we are fairly open.  We are also rather  closed minded to quack cures

Chuck, you never fail to crack me up

If I ever meet you someday, I'm gona slap your ass!

Quote:


You've done it now. Chuck will follow you around like a dog in heat.

So by taking 90mg of Arcoxia (etoricoxib) now every evening, since 4.11.2008, I have been symptom-free. There have been two occasions when I have had a mild attack...perhaps level 2-3, when I drank the cappucino made by a commercial coffee machine and were otherwise stressed out. I have drank red wine, other forms of alcohol, done sports, been working and having vacations, eaten whatever, all kinds of stuff.

I'm now trying dropping the Arcoxia. I haven't taken it at all since the evening of this Monday, 11.5.2009. There have been no symptoms. There is a slight feeling of pressure now, though, but I very much hope it won't "evolve" into a full-blown attack.

Wishing pain-free days for you all,
Rosa  

Wanted to report back on the trial to go off Arcoxia (etoricoxib):

In the evening of 10.5.2009 I took 90mg of Arcoxia. I didn't take it after that, but on 13.5.2009 I started to feel a bit of pain on my right side. It lasted perhaps about 20 minutes and was only very slight. However, by 15.5.2009 I was in constant pain and had three low-level attacks on top of that. I took Arcoxia 90mg again that evening. The next day and several next weeks were completely painless.

However as I ran out of the medicines and had to get more, I decided that it would be a good time to do a trial of lowering the daily amount of Arcoxia. I first took meloxicam 15mg on 31.5.2009 - 3.6.2009. During those days I had low level attacks and some pain. I also took Arcoxia 60mg on 3.6.2009. I continued taking only Arcoxia 60mg until 6.6.2009. Every day was worse and by 7.6.2009 I was in constant point and had low-to-mid-level attacks. On 7.6.2009 I took another Arcoxia 60mg and decided to continue with the 120 mg daily dose. The next day was again completely painless. On 9.6.2009 I forgot to take the 60mg dose during the day and got a low-level attack on the evening. On 10.6.2009 I took 120mg, but still had a low-level attack in the evening, after I had had a fight with my sister.

I got more meds then, so on 11.6.2009 I took 60mg in the daytime and 90mg in the evening, but still got some low-level pain in the evening of 12.6.2009. Starting from then, I have taken only 90mg per day, in the evening, and have been completely painless and have had no attacks.

So the conclusions (for me):

- 15mg of Mobic (meloxicam) per day is not enough
- 60mg of Arcoxia (etoricoxib) per day is not enough
- 120mg of Arcoxia (etoricoxib) per day takes the pain mostly away
- 150mg of Arcoxia (etoricoxib) per day takes the pain mostly away
- 90mg of Arcoxia (etoricoxib) per day take the pain completely away

Again, I strongly suggest everyone to at least try out this medicine. It has changed my life and has been very effective when all other meds have failed.

Ungweliante wrote on Jun 24^th, 2009 at 7:00am:


Its interesting on many drugs as to the balances needed. Too much can be just as bad as not enough.
Your post reafirms the level of experimentation and balance needed to often find relief and the power isnt necessarily in more drug quite often it can be less drug.

Arcoxia a cox-2 inhibitor is heralded as a Vioxx replacement but with all the same dangers. Under a doctors care its probably ok and I'm glad its helping you. Nothing quite so good as relief.

My apologies, but I would stongly suggest anyone willing to try this med understand all its potential downsides before using, its interaction with other drugs used, the potential for disaster with a heart condition etc.etc....
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With knowledge others may find this drug equally beneficial. Thanks for the report.

Greetings, CH community.  Recent lurker, first time poster.  Very informative board; keep up the good work!

Since I'm not yet a medical professional, this is more of an informative post than any kind of advice or recommendation.  I don't have to tell anyone here that different treatments affect everyone differently.  

The OP's post was of particular interest to me because I too have recently found relief in an NSAID.  I'm a PHer, not a CHer, so this may only be relevant to a few of you, but I think it's important to distinguish the differences between these drugs and the side effects that MJ correctly notes are associated with them.  

I was going to type out a lengthy explanation of the differences between selective and non-selective COX-1/-2 inhibitors, but it seems the folks at About.com have already done a pretty good job:

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As MJ correctly noted, Rosa's drug of choice is a selective COX-2 inhibitor, and one that isn't actually available in the United States.  These are the ones you've heard about in the media.  The reason they were developed was because they are strong anti-inflammatory drugs that don't have the GI side effects you typically see with meds like aspirin.  The downside is that they are SO selective (100x more selective for COX-2, in some cases), inflammation is significantly decreased, but the risk for thrombic and cardiac events are markedly increased.

Indomethacin is the drug most commonly used in individuals with PH and other indomethacin-responsive headaches (go figure).  It is among, if not the strongest non-selective NSAIDs on the market.  It inhibits both COX-1 and COX-2 non-selectively, evening out the playing field, so to speak.  The plus side of this is a significant reduction in the risk of cardiac events, and the downside is increased GI problems.  The GI problems, however, are much easier to fix.  In patients where peptic ulcers or GI bleeding are a concern, the side effects can be remedied with the use of a proton pump inhibitor (Prilosec, Prevacid, Nexium, etc).

With either option, lowest effective dose is important in minimize your risks.  As Rosa indirectly pointed out with the dosing trials, too much of any NSAID will contribute to headache rather than resolve it.  

The takeaway: for those of you that might be taking COX-2 inhibitors, yes, cardiac and thrombic events are a legitimate concern that should be discussed with your doctor.  For anyone on the indomethacin route, taking care of your stomach is probably your greatest concern.

Sorry if this is long; I tried to keep it condensed  

Ungweliante wrote on Oct 10^th, 2008 at 3:21am:


Take it from someone who knows too much of or too many NSAIDS can cause Kidney Failure!   

Years ago my Dr at the time prescribed a higher does of anti-inflammatory/NSAIDS for my Rheumatoid Arthritis Low and behold a short time later I was hospitalized for severe kidney failure and almost died. 

I do not recommend taking anti-inflammatory/NSAIDS on a continued basis for CH due to this probable side affect.  Make sure to consult your Dr First!!!

Sort of resurrecting here but it seemed relevant to the topic.  I started on Indocin a little over month ago and haven't had a PH attack since.  Had attacks daily for two months prior to starting treatment.

Currently take a 75mg SR PO qd, with a Nexium 40mg to protect my GI, same instructions. Not a single complaint thus far, no side effects to speak of.

Just thought I'd mention it for those of you who are on the fence about a diagnosis--an in-office Indo test might not hurt!