Prednisone Withdrawl

[Kenneth]

Hello Clusterbusters 

Hoping you guys can offer some advice or even share your experiences,

Sorry in advance this became a long post 

But first some back ground information I am 38 years old and I am episodic I had my first attack at 25 years of age and was misdiagnosed for the first two years, in the past I have utilized Prednisone Verapamil and the injections they are all godsends and have worked effectively they all however come with nasty side effects the injections in particular wipe me out, 3 years ago I received a prescription for oxygen its great when it works as it has no side effects but it often just seems to calm the attack and then I get hit again once I stop the oxygen.

My recent dance with the bastard started in December and I began my normal therapy 120mg of prednisone for two days followed by a 12 day tapper and 240mg twice a day of verapamil using a mixture of the injections and oxygen to abort the attacks the prednisone as alwlays appears to work for me pretty quickly and within 5 days I am no longer having attacks, however this time within days of coming off the prednisone I began having attacks again, my neurologist put me back on prednisone at 140mg and again at the end of my run the attacks began again, in the end  totaled 45 days of going up and tapering down on prednisone I am now finally clear of attacks and prednisone.

Its worth mentioning that when I am on prednisone I am manic as in I am highly efficient sleep 5 hours a night have laser like focus and serious cognitive enhancement I just get things done it is amazing and I honestly wish this aspect could stay with me, the down side is I have insane mood swings I go from 0 to extreme anger and hatred and then back to happy and focused in seconds.

 

So here is my question who has experienced prednisone withdrawl and what can be done about it ? I very suddenly find myself feeling tired all the time unmotivated dizzy and my body aches, I have gone from being the guy that loves to lift heavy weights at the gym and write short stories to the guy that pounds coffee and doesn't want to leave the house or the sofa I also feel pretty nasty anxiety when interacting with any one outside i guess its only fitting that after the last few months of side effects and the up and down roller coaster ride of attacks that I now have withdrawals !!! 

There is a wealth of information with regards to supplementation for adrenal fatigue and given how I feel I am starting to think that I might be experiencing this I am hopping that some one that also suffers from Cluster Headaches might offer some advice , my neurologist is very sympathetic and beyond giving me prescriptions does not seem very interested .

Much love to my fellow sufferers 

Ken 

 

[CHfather]

Kenneth, I can't answer your direct question.  I'm going to assume that you know that that's a whole lot of prednisone, and that continuing to treat your CH in that way is exposing you to serious risk, particularly of avascular necrosis, which has caused several people with CH to require various joint replacements (hip, knee, shoulder)..

Particularly since the pred is no longer stopping your cycles (that's a common experience -- helps while you're on it; attacks return when you're off; it's generally considered a "bridge" medication for CH, to reduce pain while other meds, particularly verap, kick in; it's not really a "treatment" in the way your doctor seems to be prescribing it), you should (in my opinion) be looking for other treatments.  480 mg/day of verapamil is considerably less than many people require when they are in cycle.  Some only get significant relief with twice that amount.  The vitamin D3 regimen, described in the ClusterBuster Files section, has helped hundreds of people.  I'm strongly recommending that you try that.  If you're not staying on the O2 for 5-10 minutes after an attack has ended, you should start doing that as a way of possibly heading off subsequent attacks.  You can substantially reduce the amount of Imitrex you're using by following the instructions in the "extending imitrex" file, also in the ClusterBuster Files section (looks like right now it's toward the bottom of page 1).  Melatonin at night, starting at about 9 mg and working up as needed, helps some people.  And of course busting, which too many people come to after what they thought would work didn't work or stopped working, or the side effects became too severe or too risky.  Again -- You can read about busting in the ClusterBuster Files section, the numbered files.

[Jacqui]

 Prednisone to date has been my only effective long lasting abortive treatment, however, I have to taper very very slowly or I rebound at the 10 or 20 mg level. I've never started at a dose higher than 60 or 80 mg, and lower the dose by 10mg every five days until I get to 20mg. Then I'm tapered down by 5 mg every five days and when I get to 5mg I taper to 2.5 mg for five days and then go to every other day.

 Are you started at such a high dose because initial lower doses are NOT effective?

 I'm episodic... A 6-8 week cycle that occur anywhere from 12, 18 or 24 months apart. Since the whole point of the prednisone taper is to break the cycle long enough for a prophylactic medication to become effective, tapering too fast, especially with such a high dose, sounds like it's become counterproductive.

Oxygen is successful for me but only for a few hours and then I get hit again. Imitrex is also very effective but again, the attacks just end up coming more often. I've been tried on high doses of verapamil, lithium, and many others and none effective during a year long cycle. Should I ever have another cycle like that, I will try busting.

So far, the prednisone (slow) taper for my episodic clusters, has been most effective and I've had a bone density study and many other tests showing healthy normal bone density and very little arthritis in my joints. I chalk it up to good genetics in that area..

[CHfather]

Thank you for this clear and thoughtful post, Jacqui.  I'd urge you to strongly consider the vitamin D3 regimen described in the ClusterBuster Files section.  If it helps you stay off the prednisone, that would be a good thing.  I'm glad to see that you are considering busting, too.

A quick story: I went to noted big-city orthopedist because I was having pain in my knee.  I was about 50 years old at that time.  He sent me for an x-ray, and raved about how I had the knees of a much younger man -- no arthritis.  He said I needed meniscus surgery.  After the surgery, I got worse and worse, and eventually an MRI revealed avascular necrosis.  I don't think a conventional bone density test will reveal AVN, but in any event my sense is that it can develop pretty quickly in a previously-healthy joint.  Since we know that developing AVN is a risk of steroid use, I'm just urging you to keep considering other options.  Immediate relief from the terrible pain of CH can very reasonably take precedence over any future risks, but if there's a way to minimize those risks through less risky treatments, that would seem to be the right way to go.  

I hope that didn't sound like a judgment or a lecture.  Just a suggestion to keep considering all your options, particularly, for now, the D3.

 

[Kenneth]

Hi Guys,

Thank you both for your replies and the information.

From what I have read it definitely seems like my Prednisone dose is very high and that my taper is to extreme.

 Jacqui  the only reason I have been taking such a high dose was due to it being what my Neurologist advised I haven't ever tried a lower dose, perhaps a bit ignorant on my part !

I cant help but feel that the more and more frequent joint injuries I am accumulating might be related to the Prednisone I visited my GP and had a chat about Prednisone withdrawals and he suggested blood tests to make sure my hormone levels have not been totally obliterated from the medication.

CHfather I took your advice and after reading up ordered Melatonin and also all the materials for Busting, funnily enough the Busting ingredients arrived before my eBay order of Melatonin ! I tried a microdose yesterday to see how I would react and felt fine so I now have that in my arsenal, my plan is to attempt Busting and not Prednisone the moment I feel shadows or have an attack.

[CHfather]

Kenneth, just to be clear. If you are in cycle, you want to bust as a preventive measure, which means taking a dose every 5 days (usually three doses will have an effect).  It helps some people as an abortive to stop attacks, but not everyone.  I guess you ought to know, too, that sometimes after the first and/or second dose, it's not unusual for people to experience "slapbacks" -- attacks that are worse than usual, or occur at different times than usual, or both.  If that happens, it is a sign (although an unpleasant one) that the doses are working, although they can be working even if you don't have slapbacks.  Oxygen is your best friend at those times.  You might want to put the words "red neck" into the search bar at the top right side of the page, which will take you to a post by Batch about en effective oxygen strategy that most people are not aware of.   

[Pebblesthecorgi]

Good advice and I would reinforce a couple of thoughts.  Might try a more moderate dose 80-100 mg for a longer period of time...1-2 weeks then a very slow taper over 2-3 weeks.  You can ask about increasing the verapamil (up to 1200 mg a day) then taper when pain free for a month or so.  The verapamil can have some cardiac effects and higher doses need to be monitored.   Steroids can be a godsend and safe if used judiciously but there are always potenial side effects.  A slow taper is the most effective way to prevent and manage the mood stuff.