Question about prednisone

[kat_92]

Hey all! 

Its my second day on the prednisone steroid prescribed by my doc. I’m asking anyone with experience taking the prednisone. Is it supposed to break the cycle completely until the next one? Or is it just supposed to give me a few pain free days? Seems to be helping I still have some mild pain behind my eye. 

Thanks 

[Dallas Denny]

Typically pred is prescribed as a bridging med to give some relief til a prophylactic drug like verapamil has time to take effect.....for most folks it doesn't abort the cycle but provides some temporary relief until you finish the taper 

DD

[kat_92]

Would it be safe to take verapamill and the d3 regimen at the same time? I have one week left of the loading dose and then I will be on the matinence dose. I don’t want to inquire about verapamill unless it’s safe to take both. 

[Pebblesthecorgi]

Prednisone is ok with verapamil and D3.  Prednisone is a potent antiinflammatory.  Depending on the dose regimen you are on it most likely not stop a cycle but it likely will give short term relief while preventive meds start to work.  The D3 regimen is intended to reduce inflammation and will be better tolerated and safer than long term steroid use.  

[CHfather]

3 hours ago, kat_92 said:

Would it be safe to take verapamill and the d3 regimen at the same time?

Yes, but I believe Batch still recommends (he used to recommend it) that you take the calcium supplement at least 8 hours apart from the verapamil, because verapamil is a calcium channel blocker.

[FunTimes]

I take both Verapamil and the d3 regimen.  Verapamil around 6am and d3 between 12 and 1pm. I took prednisone about 3 or 4 years ago and just got my brand new hip! The only thing that the doc could think to pin the hip replacement on was the prednisone.  I'm 43 years old.  Be careful with that stuff. Dont over do it. It will keep most of the clusters away only when your taking it.  Stop taking it and the clusters return.  Just my experience. 

[CHMom]

@kat_92 - I realize I'm replying a little late here, but for it's worth, the first time I took prednisone it worked amazingly the break the cycle. The prednisone made me feel like garbage the first 2-3 days, but once I started tapering, I felt better, and the clusters were gone! Feeling awful from the prednisone was worth breaking the cycle of CHs. The second and third times I took prednisone (the following year), it was less effective for me. Last year when my cycle kicked up, I started the D3 regimen and had good results with that. It didn't break the cycle, but it lessened the intensity of the headaches, which was awesome. Best of luck to you. You found a great community here.  

[kat_92]

@CHMom thanks for the reply! I started the D3 regimen at the beginning of my cycle this time and I’m almost positive that’s the reason I haven’t had a full blown “attack”. Only what you would call shaddows. There is no other explanation for it in my opinion. I am really hoping this goes away soon for at least a few months so I can get my life back on track :/ 

 

PF wishes 

Kat 

[Siegfried]

I am currently on Prednisone. Arrived in the ER previous week. Attacks started on Friday and continued into Saturday but the background pain between attacks did not go down anymore. Normally it falls back to KIP 1 or 2 but now it went just to a 6 or 7 and with the next attack back to a 8-9. Could not stand the pain anymore and triptans gave only relief for a few hours. I saw no end in sight so I tried my luck in the ER on Saturday evening. Drove to there between two attacks and at my arrival, got already another one. They put me straight onto the oxygen to make it a bit milder which worked well. Then they gave me a shot of Prednisone in my vain in my arm and I must say... after an hour, the pain started to go away. I was astonished by the effect ! Now I am taking 32 mg every day now for a week and had not an attack anymore since then... only 1 hour some mild-sharp pain in my eye on Wednesday but nothing serious. Tomorrow I start to taper down... will see how that works out.

And yes, steroids feel like.... steroids. I have lots more energy, don't need much sleep, very clear thinking and also very positive thinking. Hope I don't get a backslash when start tapering down. They also asked to try the Verapamil again. So now I am my first week on 120 mg and end next week, I need to go for an EG to go to 240 mg. Hope this time it helps as last time Verapamil did not do much.

I can not tell you if it brakes cycles or not as I don't have that much cycles. I have more like a chronic pattern with attacks in the weekend and reasonable days during the workweek all year around. However last week of August it got exceptionally bad so maybe yes I am in some kind of cycle.

All the best !

siegfried

 

[artunltd]

Cheers all,

I was hoping to never have to come back here again. After 3 1/2 years of no CH, they came back again this summer in July. First gradually then progressed into a full cycle.

Three years ago the headaches stopped suddenly with prednisone, YEA!!!!!!! I have been suffering off and on for 8 years previously. About 2-3 cycles a year.  (episodic). Started a regime of 40 mg per day and seemed to work for the first 3-4 weeks.(could drink a beer, with no problems) Now still taking 40mg per day, about 8 weeks now, and still getting about a 5-6 kip CH for about 45 min. to 2 hours. Usually about 1-2 am in the morning. Sometimes if I shoot a red bull quickly that seems to shorten the duration and pain, but sometimes not.  Haven't started on the Verapamil regime, D3, again  yet. Yesterday tried to have a beer with pizza, (I really love beer) got a 8-9 kip about 1 hour later. ouch!!!!!!! Was on the triptans before and didn't help.

These really suck. I live in Korea so oxygen is not an option. I just turned 63.

Any suggestions??????????    Help please...…….how can I get out of this cycle?????????

[spiny]

It would be a good idea to start your own thread Art'. In the interim, I wonder why you have not begun the D3 Regimen? It sounds like a good idea to get that building up in your system. And that is a lot of Pred over 8 weeks. It is most often used to provide relief while the Verap kicks in, not as a stand alone med. You don't say, but what form of triptans did you take? Spray, pills, or shots?

[Darren]

On 9/19/2019 at 3:06 PM, CHMom said:

@kat_92 - I realize I'm replying a little late here, but for it's worth, the first time I took prednisone it worked amazingly the break the cycle. The prednisone made me feel like garbage the first 2-3 days, but once I started tapering, I felt better, and the clusters were gone! Feeling awful from the prednisone was worth breaking the cycle of CHs. The second and third times I took prednisone (the following year), it was less effective for me. Last year when my cycle kicked up, I started the D3 regimen and had good results with that. It didn't break the cycle, but it lessened the intensity of the headaches, which was awesome. Best of luck to you. You found a great community here.  

I had a somewhat similar experience.

I've had episodic CH for about 17 years now.

My first prednisone taper (2017) was an 8 day taper. 40mg x 2 days, 30mg x 2 days, 20mg x 2 days, 10mg x 2 days, stop. On this cycle and all subsequent ones, verapamil started in day 5 of the taper. The prednisone completely killed this cycle.

But then I had a rebound cycle in 2017, only about 7 months later. This was odd, since I had never had less than 9 months between cycles previously, and had been getting longer remissions, with the most recent one previously being 17 months. My neuro then had me do a 13 day taper as 60mg x 2 days, 50mg x 3 days, 40mg x 3 days, 30mg x 2 days, 20mg x 2 days, 10mg x 1 day. Helped until the tail end of the taper, but then they started breaking through. Verapamil reduced the frequency, but this cycle lasted longer than usual. I was always about 4-5 weeks and my cycle would end. At week 6 with CHs showing no sign of slowing down; my Neuro put me on a second taper  (another 13 day). That ended the cycle, or, timing was coincidental. I don't know what it was, but I suspect it was the prednisone, as the cycle wasn't slowing down before the second taper, and the attacks were brutal on this one.

On my most recent cycle (July 2019) I did a 13 day taper at the start. CHs started breaking through towards the end of the taper again. After about a week of just verapamil, he put me on a second taper (8 day). Cycle ended. 

The prednisone definitely works for me. But, like others, I do worry about the effects on the pred on my body. I never had any negative side effects that I noticed. Never felt like crap, didn't gain any weight, etc. Had some extra energy, but nothing negative. 

About 3 weeks after my latest cycle ended, I got knocked over while playing ultimate. Landed on my shoulder, and broke my collarbone. I'm in week 4 of recovery from that now, and it's going well. I have played a ton of sports for all 41 years of my life. Football and Rugby while younger. More recently (14 years), ultimate, and running (3 years). The only break I ever had in all 41 years was my nose, from rugby in highschool. I know prednisone can mess with bone density in long term use. And am reading that newer research is suggesting that even short term high dose use might have the same effect. So, it makes me wonder if it was related. Likely just coincidence, but who knows. It does scare me a bit.

We are all so desperate that we would do almost anything for relief. But, just be cautious, and be aware of potential side effects...as is the case with any medication. There are getting to be more and more options available to us (thankfully). Many swear by Batch's d3 regimen, which I also started mid way through my most recent cycle. Some treatments (like the d3) have less risks involved. But, also it seems like these bloody CHs affect everybody differently, and we all have success or failure with different treatments. So, weigh the pros and cons of any treatment, and just be sure that you are informed of any risks. Do what you need to do to get through them. That's all that any of us can do. This forum is a great resource, with so many extremely helpful contributors. 

Edited October 3, 2019 by Darren
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