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Question about steroids for chronics (Read 3329 times)
Ungweliante
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Question about steroids for chronics
Jul 15th, 2008 at 10:13am
 
I have used steroids since the first day of April 2008 and got hit around once or twice per day. Yesterday I finally took the last small dose of the steroids, as planned by my doctor, and am now getting hit around three times or more each day. Today I've been getting hit every five hours.

So, my question for those of you who are chronic and have used steroids to ward off the beast on a somewhat long-term basis: For how long did you get increased activity after tapering off the steroids? Did the hits gradually come less often after some time or did they just continue at the same, increased rate?

Best regards and PFDAN to you all,
Rosa
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« Last Edit: Jul 15th, 2008 at 10:14am by Ungweliante »  
 
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nani
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Re: Question about steroids for chronics
Reply #1 - Jul 15th, 2008 at 10:18am
 
That's a really long time to be on steroids.  Undecided

When I need to, which has only been once since I've been busting, I go on a short taper to give myself a short (usually only the days I actually take them) break. They won't break a chronic cycle.
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gizmo
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Re: Question about steroids for chronics
Reply #2 - Jul 15th, 2008 at 10:21am
 
The one time I used steroids they completely stopped the hits.
After tapering off the hits were exactly as before - no increase or decrease.

Oliver
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thebbz
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Re: Question about steroids for chronics
Reply #3 - Jul 15th, 2008 at 2:10pm
 
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Presnisone is not a preventative. It is a transitional drug therapy, to be used while a preventative reaches its theraputic level. It has many side effects associated with long term use.
Please be careful Huh
thebb Smiley
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Lizzie2
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Re: Question about steroids for chronics
Reply #4 - Jul 15th, 2008 at 8:23pm
 
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 Smiley
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« Last Edit: Jul 15th, 2008 at 8:24pm by Lizzie2 »  

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Ungweliante
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Re: Question about steroids for chronics
Reply #5 - Jul 15th, 2008 at 8:59pm
 
Hey everyone,

Perhaps I wasn't altogether clear in my previous post - I'm NOT using steroids anymore. I stopped using them. This Monday I took the last dose of my gradual reduction of the daily steroid dose.

I stopped using them for two reasons. First, because I need to be detoxed for the clusterbusters to have any effect, and second, because of all the side effects that steroids cause when you take them on a long-term basis.

Please...while I appreciate everyone's concern and am thankful for it, I'm interested about how people have been coping right after getting off the steroids after using them for several months. Did you get hit more often than normally? If so, how long did this increased activity last?

Best regards and PFDAN to everyone,
Rosa
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Lizzie2
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Re: Question about steroids for chronics
Reply #6 - Jul 15th, 2008 at 9:52pm
 
For me, being chronic and taking the steroids every 6 weeks or so, I found the following:  I would have reduced to 0 hits while on the steroids and my chronic migraine was improved.  Sometimes after the first couple of days on the steroids, I'd have no hits at all, but usually I just had a reduced amount during the steroid taper.

After I went off, within a short period of time the CH went back to their usual, which for me was anywhere from 2-6 plus or minus a day...up to as many as 10 for me and occasionally I have days with none.  FOR ME, stopping the steroids usually resulted in CH back to usual and continued until the next time I used the steroids.

Hence why I say not the best way to use them.  It's fine if you're using them intermittently for a very much needed break in the chronic life.  Especially good to use them while starting a new preventive medication.  Otherwise, may not be worth it if it just buys you reduced hits while you're on them, but then they go back to the norm once you are off.  That's what happened to me.  So it was great to get a few days feeling better every 6 weeks or so, but in the end that really wasn't worth it.  I didn't use it to try to boost a new preventive because I've never found a prevent that really worked for me in any long term way - bits of success with verap, lithium, kudzu - but nothing earth-shattering or long lasting.

Hope this is more helpful.  I only said what I did before because from other posts I have read of yours, you appeared to say that the steroids reducing the pain is of greater benefit than the risks they pose.  In some cases, this is true - when using them for an episodic cycle to break cycle or help while going on a new prevent, or in chronics for a break when you can't take it any longer or when starting a new prevent.  I just don't think it's worth the risk to use them repeatedly when the clusters return to their norm once the steroid is tapered off.

My .02.  Take care,
Carrie
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