I've mentioned to you before the dangers of using chronic steroids, but here it is again. My doctor had a rule that I had to go 6 weeks between steroid tapers. I had received IV steroids a number of times in hospital and infusion centers. I had also taken a number of steroid tapers anywhere from a few days to up to 2 weeks in length, although most of my tapers were around 6 days, if I can remember properly.
The result for me is a very painful bone disease called Avascular Necrosis, where you basically get "heart attacks" to your bones. The steroids can lead to fatty deposits that can lodge in vessels that supply blood to the long bones (femurs, hips are most common - but also can get it in other joints). When the blood supply is cut off, the bone dies - the ischemia of the blood being cut off is quite painful, and then of course there is pain caused by the dying of the bone and resulting bone death, including walking around on dead bones. The ultimate risk is that the joint being supported by the bone could collapse and then a joint replacement is called for.
NOW I'm not trying to introduce a scare tactic. Steroids are great for many people. They are especially great for episodics or for chronics who are beginning a new preventive and they need something to help while the preventive is building up in their system. I don't think they should be used regularly for chronics just to buy a few days of reduced hits, only to have the beast return to the same-old after the steroids are gone, resulting in frequent re-dosing of steroids.
Aside from diseases like AVN, steroids in general can lead to osteopenia and osteoporosis. And this is just for the bones. Steroids also have a vast number of effects on other systems in the body.
I never knew about AVN when I took all those steroids, and to be frank, if someone had told me there was this miniscule risk that I would develop a disabling bone disease, I probably would have just waved my hand and kept taking the steroids. To me, that small risk was nothing compared to the need to reduce the head pain. But looking back, I don't feel that way. Sure it saved me a bit of pain, but it resulted in some pretty significant problems.
I'm lucky in that I only have AVN of the knees - almost everyone who has it in the knees also has it in the hips. And it usually attacks the hips first, not the knees. Because my knee joint had not started to collapse, my doctor did a surgery called core decompression where he drilled holes in the dead areas of the bone to try to decompress the pressure that had built up there and also to try to revascularize the area by promoting new vessel growth and blood supply. It didn't feel better immediately - I went through 2 courses of physical therapy (one for about 2 months and one for 5 months) and finally felt better. The 2nd course of PT was for 2 hours twice a week, and I worked very hard at it, and now I have very little knee pain and walk without limping most of the time. I will always have a risk for AVN in other joints, and I can no longer take steroids unless absolutely necessary. Since diagnosing AVN, I have had steroids 3 times only - twice were joint injections for severe joint flare-ups, and once was a steroid taper for my first flare with rheumatoid arthritis. My neurologist wouldn't give it to me even if I was begging and promised that I would accept the risk!
Once again, not trying to scare you off. Just know that steroids for chronic CH should be used judiciously and not without knowledge of their potential danger. It is definitely not something to be relied on for a long term daily basis to prevent CH. I think you definitely need to keep searching for a preventative that might help you.
Take care,
Carrie