Steroids

16 Jan, 2012 - 12:33 pm

After another 3 attacks in 12 hours, the doctor has put me on prednisolone to try stop the cycle and pressure build up, has anyone used this before?

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16 Jan, 2012 - 12:44 pm

Hi Kba78
Yes Prednisolone is a regular abortive treatment for CH but the drug actually has a lot of side effects.
I use it when the pain gets too much during a cycle and have had good success, but I only use it for very short periods of time ... never more than a couple of weeks in duration.
What dose does your GP have you on???
There are a lot on here that use Pred and others who have and won't any more because of side effects something i have been on the whole able to avoid to this point in time.
If you have questions feel free to ask on here or you can send me a private messsage
Cheers
Chris

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16 Jan, 2012 - 12:48 pm

Hi Katy
We had a bit of a discussion on prednisone a while back. This link will take you to the thread. From there you can link to further info if you like.

http://www.clusterheadaches.com.au/forum_posts.php?id=2639

Sorry you are being hit really bad right now

Sara

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16 Jan, 2012 - 1:44 pm

Hi chris, 2 daily for 3 days, 1 daily for 3 days and half daily for 3 days, so its not for very long. Thanks sara, i will check out link. Cheers katy

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16 Jan, 2012 - 2:21 pm

Hi Katy,
I was more interested in the dosage that he has you on rather than the regime for taking them
In my experience doctors (at least for me) nevr prescribed the Pred at the right level to have much effect.
It was through trial and errror that I found a dosage (considerably higher than my doctor suggested) that worked for me>
Chris

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16 Jan, 2012 - 4:12 pm

Hi chris, sorry misunderstood, its 25 mg. cheersThis post was edited on 16/01/2012 at 4:14 pm

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16 Jan, 2012 - 7:20 pm

Hi Katy,

Tried Pred a long time ago and it was somewhat effective. From memory I was on it for about 3 weeks, the dosage would build up for a couple of weeks and then you would taper off; personally never suffered any side effects that I was aware of from taking Pred.
The problem I found with Pred was that as soon as I started the tapering off process the CHs would rebound again, and for me made the bout last a lot longer. However, hope you have more success and it works for you.

For me the meds that work best when I was an episodic suffer were Verapamil as the preventative and Imigran as the abortive, and as 99.5% of my CH’s occur between the hours of 6:00pm and 2:00am of which 65% of those an hour or two after I have gone to bed I would take an Imigran as a preventative (note. not its purpose) before going to sleep and that worked great for me to and stopped nearly all my after going to sleep CHs.

When my condition turned chronic I added Topirmate to the mix which helped a lot, but is a horrible drug with lots of side effects especially in the first two weeks, and I would personally suggest only for use by chronic CH sufferers.

Currently not suffering so I guess this means my condition is no longer chronic, but has it returned to being episodic I don’t know. If so expect a bout in late Feb/early March or late Sep/Oct this year. Obviously hoping I might be going through a period of remission like SaintPeter which I have never experienced since being prescribed with CH 20 years ago.

Please accept that these are just my personal observations into what appears to work well for me. I am not a GP so always seek the advice of your GP or Neurologist before considering any actions you take.

Hope this helps. All the best and hope you turn green soon

Guy

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16 Jan, 2012 - 8:55 pm

HI Katy,
That is the same amount that I was first prescribed
The program that works for me is stright onto 75mg per day for 3 days then 50mg for 3 days then 25mg for 3 days and than stop
There has been times that I have had rebound attacks one or 2 days after stopping the prednisolone. When this happens Repeat the same program and this has never failed to abort the cycle for me.
I sould also point out that after you stop taking I get sometimes for as much as a week, severe shadowing that seems to be on the verge of a full blow attack but never actually get a CH and I get little relief from this but it is far better than a full on CH
Chers
Chris

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16 Jan, 2012 - 9:01 pm

HI again, I forgot to say that this is what works for me and that I knw of others who have tried the same thing and had no luck.
I found that 25mg a day did nothing for me when that is what I was prescribed and from all the information I have seen on the use of prednisolone for CH ifit does not start working in about 2-3 days (when I go straight on 75mgs Mine stop within 24 hours), then you need to see your GP and try and have the dosage lifted.
Please done make any changes based on what anyone says on here but take notes and print pages of others experiences and take it with you when you go to see your GP
Cheers Chris

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16 Jan, 2012 - 9:49 pm

Hi Katy, Chris,

Some great input in regard to Pred. It did work for me initially, but my GP never advised me to go back to starting the cycle again if the CHs still persisted, so some hope for all CH suffers on Pred, if it works for you, methinks.

Chris like you happily green and am hoping to stay that way, actually weening myself off the Verapamil right now as feel confident that I don't need to take it until my next attack.

Cheers
Guy

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17 Jan, 2012 - 12:25 pm

Hi Guys (ha ha) Chris, that's you too...
Katy, my view is well known re: prednisone. I would rather eat someone elses nostril hair than touch that stuff again. A 200kg shrieking mess of angst i'm happy to avoid being.
Personally, I can deal with topamax (topiramate) , but then I have a driver.
If I had to drive, or ride (as is usual in W.A.), i'm not sure i'd be so comfortable.
(your milage might vary, and I sure hope it does. )

cheers peter

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18 Jan, 2012 - 8:09 am

Hi All,

I was always given Pred at 100mg/per day to stop the cycle and then tapered off very slowly, i was on it for extended times for 2 - 3 months at a time. The crappy thing about it was that you retained alot of fluid in your body. When i first used it i went from around 65kg to 90kg in a very short amount of time and found it very hard to shed the extra weight. Before i started on the Pred i was given an injection of steroids to give me an advantage of it starting sooner with the Tablets.

My advise would be to try and stay off it if you can, in saying that if your Dr says you need it then you will have to atleast try it. Remember i am not in the medical proffesion and this is only my opinion.

Matt

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27 Feb, 2021 - 9:42 pm

Hi KBa78, I've suffered from clusters for over 20yrs , prednisone has been my saviour, at first I'd only take it for a week because of the talk about side effects but as soon as I tapered off my clusters would come back, so I chatted with my GP about how long I could take pred safely he said 3-4 weeks but always taper off, so I did and it works miracles for me with little or no side effects at all, but that's me every one is different chat to your doctor about the length and amount and see how your body reacts. I used to suffer badly with 3-6 attacks daily for around 8 weeks, same time every year, I was on verapermil everyday and using imagran and it wasn't really working plus didn't like taking heart medication and vascular constrictor.
Good luck.

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