Do I or don t I that s the question cycle started just before Xmas started...

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  • Hugs to keep you going

  • Hi Zeke has anyone explained to you what the long term effects of taking pred are? If you have just done a cycle of pred, i wouldn't recommend doing another one so soon.

    Have you looked into the D3 regimen?

  • Hi Rachel, yeah I'm fully aware of the effects of pred, both short and long term. That's why I'm not that keen. Looking into D3 now so I can get a better understanding. But sometimes it's the old devil you know thing. It's the only thing that had been successful and I normally go pf for a couple of years between short doses, so haven't really had to think about alternatives for a while.

  • Fair enough. If your cycles are normally treated well enough with the pred to keep them at bay for a few years then id say you're probably pretty safe to go another round. If you were going to be taking it back to back as treatments a few times a year then id definitely try to guide you down an alternative route but if youre only having to take it here and there over the space of a few years then i say you do what you gotta do.

    No point making yourself suffer for an extra week if its not necessary.

  • Thanks Rachel, that pretty much is exactly the same advice that my Neuro gave, but thought I'd put it out there for comment. Pred is nasty

  • Yeah it is hey. The only positive is the relief from the pain and extra energy. But the negatives definitely outweigh the positives.

    What dosage do you take and for how long?

  • I take 75mg for five days, 50 for five days, 25 for five days then halve it every five days.

  • Far out that is a high dose. You must get really agro by the 3rd day of being on 75mg. But if thats what you have always done, then id say stick to that.

    If you're worried about doing this round so close to the last, then maybe id suggest just starting at 50mg for a week and then 25mg for a week and so on?

  • Ive personally never bothered tapering any lower than the 12.5mg. In the past, ive done 50mg for a week, 25mg for a week and then 12.5mg for 2 or 3 days and then i stop it altogether.

  • Nah no agro, but it doesn't make me feel very nice, biggest problem I have is the withdrawals afterwards. Side effects aren't great so that's why the long taper. Agree with your idea on starting at 50 mg tho

  • I cant say ive ever gotten withdrawals from the pred. But i have always tried to keep each round to 14-18 days tops. The weight gain and mood swings were the worst side effects i got from the pred. I havent taken it in a long time. Im having great results from the 5 MeO-Dalt. I had good results from the D3 also.

    Yep i reckon you give another round of pred a go starting at 50mg and if you still cant seem to interrupt this cycle then look into the D3 regiment instead.

  • With the D3 do you stay on it when not in cycle? I don't do anything between cycles, I live as though they simply don't exist. Maybe I'm lucky

  • Thanks so much for the advice Rachel, it's great to get opinions from other sufferers that tried and tested.

  • Im not the right one to ask for that. Im chronic, well i was until the 5 MeO-Dalt lol maybe Josie will be able to answer that question. Josie is episodic but continued taking the D3 but only a maintenance dose amount.

  • No worries Zeke. I hope you find some relief soon mate. Keep some redbulls stocked in the fridge. They can help with aborting while you wait fir the pred to work its magic.

  • Cheers, wishing you all the best in staying on top of it

  • G'day Zeke, just throwing my two cents in. I was on the same dosage as you, and I had success for a couple of cycles. First cycle I was on it and it killed it in two days. Second cycle took more than a week. Third cycle was a failure and under the 'guidance' of my neuro I had 3 courses back to back. I had acne all over my back, I was an expert level asshole and the grocery bill rivalled the power bill. I've since noticed a marked deterioration of my joints. I ended up treating the rest of that cycle with oxygen. By the way, at that stage I was fearful I was turning chronic because it was lasting for months. The prolonged cycle I attribute to sumatriptan. I no longer need to take either! Good luck on your journey mate!

  • I continue to take the regimen. I spent 7 yrs as a chronic (2008-20015), starting using psilocybin at the 2nd year mark. Continued on for the next 4 1/2 yrs with fairly regular treatments. The best run of pain free time was 42 days. Then sometime in 2011 or 2012 I started on the Vitamin D3 Regimen. My levels were so low! <33ng/mLs. Cluster patients report they achieve the best results when they're able to get their 25(OH)D levels up to <65ng/mL. With consistent lab tests and sticking to the regimen as written, my best levels never went beyond <60ng/mLs.

    I definitely noticed a major reduction in frequency, duration and intensity. Read all about it from the author's first post on Cluster Headaches dot com. .pl?num=1291969416

  • Hey Zeke, pred is often used as an interim measure to give some other long term preventative, like verapamil, a chance to build up in your system. I did a 16 day pred taper round about the same time as you, but started on verap the same time. Been completely pf since then.

  • Hi zeke, I'm episodic and take the d3 until I'm positive ch cycle has passed, (a few weeks after my last shadow, even decreasing to 5,000iu by the 2nd week) But continue to use a normal dose of 1000iu with my other vitamins throughout pain free periods. That seemed to work for me. Pls feel free to pm me with any questions. Good luck

  • Xxxxxxx Yzzzzzz we have exactly the same story!

  • Thanks for all the support and info people. I couldn't do it anymore so I am back on the pred at 50mg to start. Had my first 6 hour sleep in a week a more. I know it's not good for me and that gets me down but fatigue and pain is too much to bear.... I am looking into the D3 though and see how that goes.... Cheers every one and have a great weekend

  • We've all been there zeke. You just do what you need to get thru this. I totally understand and in the meantime research other options to be armed further for next time. Good luck

  • Josie Panucci Loko cheers