Is Prednisone making it worse? Please help :(

[Erikaleigh12890]

Hi all! I am a 27 year old female from Plymouth, MA. I am so excited to attend the CH conference in Sept! So I was just jumping around reading some posts. This triggered a question ... I have been getting CH since age 12. I was misdiagnosed until age 22. I had always had seasonal attacks every fall and spring, pretty clear in the winter and summer. I always knew what month and what time they were coming. Well the past five years with my specialist just seem to be pumping 80mg Prednisone tapers into me everytime a cycle begins. I use Sumatriptan injects for emergency (at work, in public) cases and O2 when at home. But to "break my cycle" he had me on Prednisone. It's been about 2 years with slight breaks off prednisone. I am scared to death of the side effects and what it does to the body. I tried the d3 Reg with no luck, verapamil fast release at 240mg no luck and he told me to get off and go on prednisone, mushrooms worked so well for me years ago and kept me free for one year, but these past two years are just non stop. I feel like I'm losing me mind, I've lost jobs, had to stop school. Any insight on if prednisone is making it worse?

[CHfather]

I wonder if you could get to see Dr. Brian McGeeney in Boston.  He's a great, great friend to people with CH.  I'll PM you a way to contact him (he posts here using a screen name, but I don't like to put people's real names with their screen names). At the very least, I'm sure he'll be at the conference.  I think everyone here will agree that prednisone is meant for short-term relief to allow other meds to kick in, NOT for long-term treatment.  It's not exactly clear to me how much you're taking, but in my opinion it sounds like much, much too much.

 

Your dosage of verapamil was very low. If there wasn't a medical reason not to go higher, you should have been trying two, three, and even four times as much verap.  Depending on how much Imitrex you're using, that can be causing rebound issues, too.  I'm glad O2 is working for you!  Are you splitting your injections?  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

 

It's pretty rare that the D3 doesn't help.  I'd consider trying that again.  You can be directly in touch the the originator of the D3 regimen, Batch, who will do his 100% best to make it work for you.  Batch will be at the conference, too.

 

Mushrooms won't help while you're taking pred or trex.

[jon019]

Hello.....what he said ^^

 

...especially re the verapamil....240 is a pointless dose. Close to the typical starting dosage then you ramp up

until efficacy found or side effects preclude.....at times I used over 1000 mg/dy (with minimal side effects)....480 has

been reported as the clusterhead "sweetspot...as has been stated multiple times...clusterheads can tolerate much larger doses than are used for blood pressure treatment....I don't know why...and don't care...but a lot of GP's are scared to go there..

 

....and I'd get a different specialist....prednisone in ch treatment is ONLY for cycle breaks (1-2 week tapers)....you are

wise to fear the long term effects. It doesn't always work either......my neuro was fond of methylprednisolone

(I think a more potent version of prednisone)...she would do an IV drip then tablet taper.It worked once to entirely break and stop a cycle....it was like a miracle...and it was only the first time that it worked. After 1 or 2 more complete failures "we" decided...no more....

 

Best

 

Jon

[ThatHurtsMyHead]

ErikaLeigh12890,

 

Silly question, but if the magic M helped you years ago, why not hit it again?  Or Change to the RC seeds?

 

PFW,

J

[Pebblesthecorgi]

80 mg of prednisone is a middle of the road dose for clusters.  Generally one seeks the lowest effective dose 60-100 mg a day) to pause the cycle and maintain it for a week or two while you increase the verapamil dose (which most probably will be constipating so use a laxative and stool softener).  

 

You will find the needed verapamil dose is going to be higher than you would think (up to 1200 mg for a short time in some instances)  and blood pressure needs to be monitored to avoid getting dizzy.  

 

Long term exposure to high dose steroids (months or years) have potential serious side effects which need to be monitored closely by someone familiar with managing high dose steroids.  The emotional toll of high dose steroids is also not insignificant and needs to be monitored usually by someone who is close enough to you to notice a mood change.

 

If you have been on prednisone at 60 mg a day for a couple of years your concerns are justified.  Short bursts of steroids like prednisone do not require a taper but if you have been on 80mg for most of 2 years weaning off might be a challenge and the guidance of an endocrinologist or rheumatologist knowledgeable in this is justified.  The prednisone can suppress normal communication between the adrenal gland and the brain and tapering off oral therapy has to be done in such a way to allow your own adrenals to start functioning normally.  Also if you have been on prednisone for a long time and then are under increased stress (surgery, injury or intense life event) you actually need a boost dose of a steroid to handle things physiologically.

 

Prednisone and verapamil can be helpful in busting a cycle but try and wean off as sensibly as possible using O2 as a abortive.  Once you are off roids, verapamil and other blockers for a week consider another trial of MM in the correct set and setting with a knowledgeable sitter.  Sometimes when you get wrapped up in a menagerie of modalities it takes a while to refocus and follow a disciplined path (which, of course, will always have detours)

[Erikaleigh12890]

Hi all! Wow what great support and feedback! Thank you all. I am going to try a different specialist. I agree with all of you. I want to try MM again, I just need to figure out my schedule. I work full time and I'm a full time student so finding time to do the MM while being away from home so much its difficult. (needing my oxygen instead of using injects, etc.) And thank you for the info on prednisone. My goal is to get myself feeling back to normal...as normal as I can. Thank you all.

[CHfather]

Best wishes, Erika'!  Keep us informed if you can.

[dennisoc]

Do the mm in smaller doses that don't effect yer work...Small tastes...not recreational shit...chew tiny pieces ..almost imperceptible...and live PF.

[Erikaleigh12890]

Thanks all! After attending the conference, I am sickened how long I was on Prednsione and worried of the side effects. My hip has been bothering me ALOT but I always put it off to working out. I'd like to get an MRI or Cat scan to check in my hip. Has anyone else done this?

And in response to MM in smaller doses, I am going to try that!

[ThatHurtsMyHead]

Erika,

 

Sadly, many of us with CH end up with permanent body damage due to the scripted drugs the docs hand out like tick-tacks...   I don't mean to scare you, but hip replacement is a very real issue for many people that take high doses of prednisone.  Please have your hip checked.  

 

MM can be very challenging to many of us, but it can be a real life saver.  NO side effects after you're down from the dose.  I'll make a change to that, one side effect many of us feel after several doses is a VERY good sense of well being.  It's been documented to last for weeks to months, to years after our doses of MM (seeds, LSD etc).  

 

J

[fireface]

I learned this weekend that Prednisone may have caused hip damage. After a horrendous cycle ... and several prednisone dose packs... my hips started to hurt and I didn't know why... Maybe now I do...

[1 Last Song]

80mg doses of Prednisone is a fairly hefty dose. Yes, some do 100mg and then taper, but 80mg should do the trick. I would bet that if 80mg didn't stop the attacks then 100mg isn't going to neither. Also, I hope that I misunderstood, but it looked like someone said you had taken 60mg of Prednisone a day for years ?? OMGosh! That would be deadly and side effects would happen fairly quickly. Like the others did say, Prednisone should be used sparingly for short terms and must be tapered correctly.

 

To answer your question: I've done a TON of steroids, too many in fact. I know first had their benefits and their nasty side effects. Thru all my years of using it, I don't feel like it's ever made my CH worse. My advise is to use it as a lifeline only. Try to get back to something else that's worked before (MM ??).... and maybe seek another doctor that's willing to do more than write a script for Prednisone.

 

Good luck !

[1 Last Song]

I learned this weekend that Prednisone may have caused hip damage. After a horrendous cycle ... and several prednisone dose packs... my hips started to hurt and I didn't know why... Maybe now I do...

 

Sorry to hear that FIreface. Steroids did severe damage to my hips (And much more). Don't rely on bone density scans to check your hips. It's not good enough. You need x-rays and tell them upfront to look for AVN (A Vascular Necrosis).

 

Good luck !

[Erikaleigh12890]

Hi! I was on 80 mg tapers for about two years. This consisted of 80 mg per day for one week, then 70 mg per day for one week, and so forth. And once I got to the bottom of my tapers my doctor would tell me to go right back on... it was brutal.

[1 Last Song]

Hi! I was on 80 mg tapers for about two years. This consisted of 80 mg per day for one week, then 70 mg per day for one week, and so forth. And once I got to the bottom of my tapers my doctor would tell me to go right back on... it was brutal.

 

That sounds brutal. Did it stop and prevent your attacks ?? I don't mean to sound like I'm downing your doctor, but it seems like after a few rounds of those tapers, the doctor should've had a meeting with you to tell you the dangerous side effects you WILL face if you kept going at that rate on Prednisone (Or other steroids). The doctor should've also been trying other meds / treatments for you so that you wouldn't need to do that many tapers.  Writing a script for a taper seems like the easiest way out for him/her without really finding something less damaging to help you. Even if it were to send you to other 'specialist' for possible new ideas.

 

Again, I don't think steroids have ever caused my clusters to get worse. The beast does what he wants, when she wants, almost regardless of what I do. Other meds have made me worse for sure, but not a steroid medication ... except for maybe a steroid block that I had called SPGB. <- That made me much worse quick!

 

Also, I didn't answer one of your questions from above: Yes, I have had multiple MRI's, CT scans, X-rays, on my bones due to chronic steroid use and permanent damage that it has caused. I wouldn't rely on a 'Bone Density Scan' as I had one and it came back 'Normal', then I was diagnosed with AVN (Bone Death) just about 2 months later.

 

Good luck and I hope you find some relief soon.