Rose Posted June 30, 2017 Share Posted June 30, 2017 Hi everyone, new to ClusterBusters...but so familiar with clusters! Prednisone has been my go to drug for years, for many reasons. It is very effective for me, once I reach the right level. In the past, it has alleviated all other aches and pains, but for some reason, this time around, it seems to be causing pain. Full disclosure, I am 62, very physical, but always have been. The more prednisone I take (highest dose 60 mg) the worse I feel. Breakthrough CH treated with sumatriptan injection (split). I have had episodal clusters since the age of 19. Appreciate any input you might have. Thanks for now, Rose Quote Link to comment Share on other sites More sharing options...
spiny Posted July 2, 2017 Share Posted July 2, 2017 Welcome Rose! Pred is a wonder drug with some bad side effects. Long term usage is not a really good thing. I totally understand your taking it if it works, but I wonder why your doctor has not given you life saving O2 or a course of Verapamil. It is the most common effective drug prescribed. Cher's usually can tolerate pretty high doses. Pred is mostly used as a 'bridging' medication to take till the Verapamil kicks in. Like about one or two weeks of Pred and then it is dropped. Good to read that you know how to split your injections!!! I am not sure why you are having aches and pains, but Pred can destroy your hips by ruining the joint. This has caused many to need hip replacement surgery!!! If you have taken a lot over the years perhaps this is part of the problem? I can also destroy your shoulders. Are you being treated by a Neuro? He should know better. And he should give you O2 to kill any hits!!! It is the safest treatment and a primary go to for us. A PCP likely would not be up on the best treatments for CH. And when you find something that works, that is what you want and trust. Years ago they did not know about the severe long term damage it can cause. So, if you have been using it for that long, you might want to look in that direction. How long do your cycles last? ATB! spiny 1 Quote Link to comment Share on other sites More sharing options...
Rose Posted July 3, 2017 Author Share Posted July 3, 2017 Thank you so much for your response. I have tried O2 and Verapamil, with no success, unfortunately. My cycles are typically 6-8 weeks. Sansert was my wander drug, it is NLA. Indeed, Prednisone is awful, but my Dr. is aware of bone issues. I do have osteopenia. I so fear the overuse of any drugs as I age especially prednisone and sumatriptan. Again, thanks. Rose Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 3, 2017 Share Posted July 3, 2017 We'd probably urge you to give oxygen another try. For many/most people, past O2 delivery systems have been inadequate (flow too low, mask wrong). 90-plus percent of people for whom O2 didn't work in the past find that with higher flow rates, better mask, and good breathing strategies it will work for them. 1 Quote Link to comment Share on other sites More sharing options...
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