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prednisone


sleepless
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New here. After 30 years of CH I was granted a 4 year reprieve. Thought I was done... but it's back and so doing my old regime of oxygen, sometimes immitrex but more important I went back to prednisone/verapamil (60mg for 7 days then taper) mix as I did successfully 1-3 times a year for 15 years. Because I've been "away" from CH for a while I went back to old protocal without doing research (stupid I know) and yesterday started looking around the internet and found very little on prednisone (including here on clusterbusters) and the little I found was very critical. Are fewer CH sufferers are using prednisone these days? Is there any recent research on pred? How much prednisone likely to cause long term damage? I'm on day 2 of the pred but a little freaked out. Any suggestions would be really appreciated.

 

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Hiya sleepless (we KNOW that feeling)....welcome aboard...we got yur 6..

Prednisone..or methylprednisolone (IV and/or taper)...are used  to BREAK a cycle...maybe 10-14 days worth.  After that...whatever preventive you at using is SUPPOSED to kick in. Continued use of steroids beyond a "break cycle" taper is decidedly NOT wise. That amount won't have any long term effects...but it is NOT a med to be used long term............

Best

Jon

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sleepless, what jon' says is all correct. For most people, prednisone seems to give some pain-free days but the pain returns when you stop it (or during the taper down).  On the other hand, it is rarely administered in the way that Dr. Goadsby (a CH expert) describes as the standard: "1 mg/Kg up to 60 mg for four days tapering the dose over three weeks is a well accepted short-term preventive approach. It often stops the cluster period, and should be used no more than once a year to avoid aseptic necrosis."  https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf  ("asceptic necrosis" is when bones die from lack of blood flow. hips, shoulders, knees can be severely affected).

You should look into the vitamin D3 regimen, which has helped lots and lots of people.  See "D3 regimen" in the ClusterBuster files section.  If you're going to use Imitrex, also see the file in that section (on page 2), "Extending Imitrex."  You can get two or three shots from a single autoinjector. 

If you used the search bar to look for references at this site to prednisone and didn't find many, you probably didn't have it set to "all content," since there are many pages of references to pred found in that search.  This is just FYI . . . We're always glad when people ask questions!

 

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Thanks so much to both of you, and yes CH father I was not searching properly, (I was a regular on the old clusterheadache website and am new to this site - also it was 2am and was prednisoned out :))

Now that I've started the pred I'm gonna take the Goadsby administration and see it through - it did stop the cluster (for now), then try the D3 regime.

My doctor knows nothing, I've always gotten better information on these sites and at times I think these message boards kept me going.

Again, thanks.

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  • 1 month later...
On 1/27/2018 at 2:31 AM, sleepless said:

New here. After 30 years of CH I was granted a 4 year reprieve. Thought I was done... but it's back and so doing my old regime of oxygen, sometimes immitrex but more important I went back to prednisone/verapamil (60mg for 7 days then taper) mix as I did successfully 1-3 times a year for 15 years. Because I've been "away" from CH for a while I went back to old protocal without doing research (stupid I know) and yesterday started looking around the internet and found very little on prednisone (including here on clusterbusters) and the little I found was very critical. Are fewer CH sufferers are using prednisone these days? Is there any recent research on pred? How much prednisone likely to cause long term damage? I'm on day 2 of the pred but a little freaked out. Any suggestions would be really appreciated.

 

Sleepless, your case sound much like mine. 15 year episodic. Pred/verapamil regimen usually knocked out my cycle in a weeks time for years. I would stop the verapamil after the cycle was broken. 3 years ago the Pred/verap regimen didn't work and then didn't work again when it was represcribed. That is when I started researching the web and found this site and the ch.com site. I started the D3 regimen and within 5 days my cycle stopped and I stayed on it and had no signs of a ch for three years. I got sloppy with my regimen and then forgot my stuff before going on a trip to work at the family coast place in GA and caught something like the flu and was bed ridden for a few days but was off the regimen for at least 5 days. Not very long afterward I got a small ch. Four days later I started getting hammered. My neuro started me back on the Pred/Verap regimen. My ch stopped the first day of prednisone. I got 8 days of PF. Felt great. Then day 10 they came back. I haven't been able to bust it. I have microdosed mm and increased my D3, etc. Still taking verapamil, which made me feel pretty weird this time when first doing 2 240 veraps/day. Prednisone makes my whole body feel good due to the decreased inflammation. Certainly not good for you but if my neuro would give me another round right now I would take it in a heartbeat. I wouldn't do a third round. I wouldn't be freaked out by your first round at all. 

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Similar here....had a great neuro...now at Stanford. We did a methylprednisolone (described by her as souped up prednisone) IV and then taper. Completely stopped the cycle (was ECH at the time) without need for verapamil. Damned miraculous I thought...but think again jonboy. The next two times same protocol had NO effect and I refused any further attempts out of 'pred fear". DID do the verapamil for many yrs...sometimes going over 1000 mg/dy....lucky to not have any consequential side effects and it was 70% effective in stopping or lessening hits....with O2 taking care of the rest and Zomig nasal spray (5 mg) for the occasional breakthrough......

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