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Steroids

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#1 Wed, 25/11/2015 - 14:16
Neil Phillips
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Steroids

Can Steriods make the Ch's worse ?

I went onto steriods in August to see me through a 2 week foreign holiday, so I could have a proper pain free break and a glass of Chianti. On my return and within a day or so of finishing the course , the Chs were not only back, but were incredibly vicious. Much worse than any other part of the year. This was a shock as I felt as though my bout was coming to an end, and I thought current thinking was that Steriods could break the cycle. Can they make the cycle worse ? (note I was also having dental probs that week if there is any connection there ?)

Any answers gratefully received

thanks

Neil

Mon, 21/12/2015 - 09:57
Val
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Hi Neil

Sorry for the late reply!  Nice to see you back here, but wish it was for other reasons!!!!    There are several schools of thought regarding steroids; 

1.  They work and work well and the cycle ends.

2.  They work, but when they stop you get vicious attacks, almost as though they have backed up until the steroids are gone.

3.  They work, but they trigger off bad attacks when the steroids end.

4.  They don't work at all.

No-one can predict which response a sufferer will experience with steroids.  As always with CH there are no absolutes.

Val. xx

Mon, 28/12/2015 - 10:41 (Reply to #2)
Neil Phillips
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Thanks for the reply Val, better late than never.

In the past CHs carried on as normal or lighter after coming off steriods but in August the attacks are how you described them in possibility number 2  i.e. Vicious Sad three months of hel since then

I'm back on Steriods for the xmas period for another break. I'm not happy doing this but my episode has dragged on for a year with good and mainly bad periods so I just need a rest.

It's going to be interesting to see how they react this time when the tablets run out. I'm fearing the worst as like the August rest I take these opportunities to have a drink (wine etc) and to feel relitively normal again. My debit column is building up nicely for a full frontal (well, left sided ) onslaught .

I am feeling flipping great on the steriods though, I'm out running and cycling everyday with no aches and pains, I know how Lance Armstrong feels now !!

Neil

Thu, 31/12/2015 - 17:17
Harrietjt
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My husband (CCH 8 years) has had Prednisolone occasionally with different results. The first time it worked well and when the course was finished CH continued in its much calmer form that we can live with. The second time it simply didn't help. This August CH was out of control reaching 10attacks in 24hours and Prednisolone was very good calming the whole thing down to 1-2 attacks/24hrs with no backlash on finishing the meds.

Harriet

Fri, 22/04/2016 - 15:39
Becky1993
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Hi Neil, 

 

i was was wondering the exact same thing but I think you might be right. I've been on prednisolone for 10 days and came off them and within 2 days the CH were back, last night was the worst I've ever experienced, I couldn't cope at all. Nearly took myself off to A&E but working in the hospital I know there isn't much that they can do. I'm waiting on my first Neuro appt in May!

Sun, 24/04/2016 - 07:45
Val
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Hi Becky

The usual steroid regime for CH takes three weeks or so.  You start at a high dose - 60mg  a day for five days and then reduce by 10mg increments every three days thereafter until tapered off.  Steroids should never be stopped suddenly, they should always be tapered off.  You say you were only on the prednisolone for 10 days, what dose level were they and were they tapered off.

Val.

Mon, 25/04/2016 - 07:01
Harrietjt
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Can I ask if anyone has ever heard of or tried remaining on a maintainance low dose of Prednisolone once the full whack has been used to put the beast back in the cage?

Pete finished his successful course of Prednisolone on Friday, and yesterday the beast started to wake up a bit and this morning has already rattled the bars of the cage.

Having just read up about the general use, benefits and drawbacks of Prednisolone therapy, I find myself wondering if a maintainance dose could make the difference.

Harriet

Mon, 25/04/2016 - 14:37
Dorothy
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Sorry your husband has been having such a bad time of it Harriet. I think every person is different as regards how treatment works for them. Steroids stopped working for me but I wasn't on a maintenance dose, just a course every now and then. 

Thu, 16/06/2016 - 18:37
Kit
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I've just started again after almost 2.5 years remission. In that time off I was also diagnosed with type 2 diabetes which I control with diet and am now actually blood sugar 'normal' whatever that is. Anyway my GP refused to give me prednisalone today as the high doses would put my pancreas under severe pressure and might bring me back to permanent diabetes. Reading up on the drug with fresh eyes I can see that patients with diabetes may need increase their insulin or diabetic therapies.

I wonder how many of us are close to diabetes or may be inadvertantly putting themselves at risk through use of this drug as such high levels? 

If you are diabetic hopefully your GP has spotted the risk????

I'm glad mine did and so it's straight onto the the Topiramate we go - Yay!

Cheers

Kit

Fri, 17/06/2016 - 12:12
Val
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Kit, because of the damages that steroids can do to the rest of the body, we have always been told we can only have course of them once every six months.  This allows the steroids to get out of our system before doing too much harm.  I have to say when I had steroids as soon as the dose dropped to 40mgs a day mine were back much as they were before.   The steroid course is usually only given for those who have long cycles, or for chronics who need a respite, or when changing from one preventive to another.

Neil, have you tried asking for Greater Occipital Nerve Blocks?  They are a combo of an anaesthetic and a small amount of steroids given in an injection to the occipital nerves at the back of the head just under the skin.  Some sufferers have a course of steroids, then six months later they have an GONB, then six months after that another course of steroids.  It lengthens the gap between steroid course and lowers the likelihood of long term steroid damage to the body.   There are also multiple nerve blocks that can be done in areas of the forehead as well as the occipital nerves.  Might be worth discussing with your neuro.

Val.

Sat, 03/09/2016 - 19:39
Neil Phillips
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Hi Val, fellow CH'ers 

Sorry for late reply.

Re Greater Occipital Nerve Blocks - This sounds interesting. I'm seeing a Neuro in Nov as I'm now a year and a half into a cycle (prob not a cycle anymore) and I'm so fed up. Does a GONB make the CHs go away for six Months ?

I've just come off steriods again following a 3 week session and a) they were less effective than normal b) Ch's are back and attacks are vicious again, day and night. Oxygen is struggling to abort them, the injectors work well, bu I'm getting attacks again after 4 hours.

I'm considering going back to the Doc to hopefully get my appointment moved foreward.

As I said, I'm thorougly fed up but battling on. I try not to let it change the way I live my life too much.

Neil

Tue, 06/09/2016 - 10:45
Val
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Hi Neil

The GONB response is much the same as steroids.  For some it can  have an immediate and long-lasting effect [ but not six months], so some it takes a few days before it kicks in and then they get relief for a few days weeks, for others it has no effect at all.  Much depends on the skill of the person administering the GONB. Prof Goadsby is the KING of GONB jabs! 

Glad you are seeing a neuro, I was going to post that you need a treatment review as repeated steroid use even with six month intervals, can cause a lot of other serious health conditions, especially at the levels we use them.  There may be something like Gammacore device that you could try, or maybe the new device inserted in the cheek, called SPG, your neuro will determine if you are a candidate for either. 

Keep us posted with how you get on.

Val.

Tue, 06/09/2016 - 15:46
Neil Phillips
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Hi Val,

thanks for your replies. 

The Neuro that I'm seeing in November is a general Neuro. Do I stick with him/her or do I ask to be referred onto a Specialist Cluster Headache Neuro such as Prof Goadsby, as my treatment would then be more targeted to my needs, ie the CH neuro would have a better understanding of the condition and be able to move things on quicker ( I presume ) ?

thanks

Neil

Tue, 06/09/2016 - 21:22 (Reply to #13)
zanycheff
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Normally prednisone is used to break a cycle while titrating another preventative in /steroids and prednisone in particular are not very nice drugs and long term steroid use comes with its own particular problems ,also for ch it seems to be most effective at higher doses 

hope this helps 

zany

 

Thu, 08/09/2016 - 10:25
Val
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Hi Neil

I'd go for a consultation with the Prof every time!  I think you live in England?  If you do you can ask to be seen by a consultant of your choice, its an NHS scheme called 'Choose & Book - Choice at Referral' and you can ask for this for a second opinion referral of that's what it comes down to.

Val.

 

Tue, 13/09/2016 - 17:05
ElizabethK
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Neil,

I would echo what Val has said, get yourself to see the Prof, there is no-one better!

Liz

Sat, 17/09/2016 - 14:24
MarkShepley
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Joined: 26/02/2014 - 14:04

When I first took steriods in 2010, they were a miracle but after 3 weeks or so, things just went back to normal. They act as a buffer whilst Verapamil (or alternatives) build up in your system. My neuro said to me, that Verapamil takes weeks if not months to really work on clusters so the need for a buffer is sometimes required.

Last time I was in cycle (Autumn 2013) the steriods had a significantly lesser impact so maybe I'm getting used to that one. Toying with when to take this bout's steriod treatment. Things aren't bad enough (yet) so maybe I won't but I've a few weekends away soon where I could do with the potential of a short cluster free spell.

Tue, 27/09/2016 - 19:39 (Reply to #17)
Neil Phillips
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Yes, I live in England,

Re Choose and Book - Do I go back to my Doctor and re book this or do I change my current appointment with the Nuero through my booking paperwork, i.e. I phone up the booking service at the NHS.

I've an appointment with the local Neurologist on the 11th Nov.

I'm pretty desperate to get more help as I seem to have gone chronic, having attacks both day and night for almost 2 years now. My life revolves around Oxygen and injectors Sad

I'm generally in good spirits though Smile

Neil

Wed, 05/10/2016 - 09:43
Val
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Unless the existing neuro is willing to refer you on to another neuro, then you h ave to go back to your GP, it has to be a health professional that refers you, you cannot self-refer.  Good luck and keep us posted.

Fri, 11/11/2016 - 08:23
Neil Phillips
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Thanks, it's my appointment with the Neuro day.

 

I'll let you know how it goes Smile

 

Neil

Mon, 14/11/2016 - 10:09
Val
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And how did it go, Neil?

 

Val.

Tue, 06/07/2021 - 01:11
kevin84
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Joined: 12/03/2015 - 11:41

Hi all,  i dont type on here much at all but read everything i can to get other views and how people deal with things.

ive had an aweful 3 months which has seen me hit an all time low, so used prednisone again, used it a few times now with generally good success, that was a month ago i used it. I came off weaning and instantly started back on 8 a day tearing my self to pieces, I spent the last 11 days battling GP as no neuro in northants could be bother to pick up answerphone msgs, been in AnE twice with seperate head and body injuries from littlerally banging through walls, now only to be put back on prednisone for 2 weeks then starting a long term course of Pizotifen increasing dosage.....    im not sure what to make of the steroids as i was told first time using it it was only to be used every 3 months or longer,  could i get some info or guidance on that rule pls and certainly on using it it such quick succession?   
 

thanks

kev

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