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Corticosteroids, prednisone, dexamethasone, etc...

Discussion in 'General Treatment' started by Eeyore, May 11, 2015.

  1. Eeyore

    Eeyore Senior Member

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    Has anyone taken these during the course of ME, and if so, what was the effect? Did you have any unusual effects, and did it have any effect on the ME in general?

    I'm not suggesting anyone try this - only curious if anyone has. Oral corticosteroids can be dangerous, especially with long term use, but whether or not they affect the disease process or symptoms at all could give information about how it works.

    So if any of you have, I'd very much appreciate a report of how you felt it helped or worsened your ME (or did nothing) as well as the duration of the effects.
     
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  2. cman89

    cman89 Senior Member

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    I know they are used to reduce the effects of an MS attack. Not sure about ME. I know with ME the effects of drugs can be a lot more random.
     
  3. Eeyore

    Eeyore Senior Member

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    If corticosteroids do work, then it's more likely autoimmune, autoinflammatory, genetic, etc., but less likely infectious (although these are by no means absolutes).
     
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  4. nandixon

    nandixon Senior Member

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    @Eeyore

    I haven't tried steroids yet, but prednisone is definitely on my short list to try, if nothing else for the potential benefit of gaining insight into the disease, as you mentioned.

    @Woolie has had some good success with prednisone, as she mentioned on her thread here:

    Prednisone got me out of bed, should I continue?
     
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  5. Eeyore

    Eeyore Senior Member

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    That's interesting - and fits with my current thinking about the illness. I hope to hear others' experiences as well.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Am taking Cortef now but my entire system is so severely messed up from severe MCAS reactions to food, mold exposure, severe autonomic problems, viral issues, shortness of breath and very low BP that it is too early to assess and I started several new meds at the same time. I have no way to isolate what the Cortef is doing vs. my other new meds.
     
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  7. rosie26

    rosie26 Senior Member

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    I tried 5mg Prednisone in my first severe year of ME and it felt like it made the overdrive part of the ME worse for me. It was an utterly intolerable experience.

    If you are interested, I found Prozac worsened the underdrive - the crushed exhaustion side of the ME. I was given a 20 mg tablet of Prozac and it crushed me even further - I couldn't believe I could feel even more crushed than I already was. If you can remember those lead coats that dentists would put on you when having an xray - that was what Prozac felt like - being given a lead coat to wear.

    Those 2 tablets are the closest I have experienced of how ME made me feel in my first severe year of ME in regards to the overdrive and underdrive thing. But, how accurate my thoughts on that are, I don't know.
     
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  8. Woolie

    Woolie Senior Member

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    Hi @Eeyore, yes, I've been having great success with prednisone - fairly large doses - which I started taking after a two month crash that left me bedridden. As you'll see on that thread that @nandixon posted above, lots of other people have had success too, but most have either tried it "accidentally" (when given it for a rash or something else unrelated) or have been given it in small, replacement doses. Not everyone has had a good experience, though, so the MECFS variability thing seems to be true.

    I'm currently on 25mg, have come down from 40mg over the last two months. That's serious stuff. But not as serious as being in bed 24/7 and losing my job. Hoping to get down to 10mg over the next few months then stay on that. Side effects are puffy face and general flabbiness on arms and back. This suck, but obviously nowhere near as much as being bedbound. The doc is monitoring blood pressure, blood glucose and also has me on vitamin D and medication to counter the potential effects of the drug on osteoporosis.
     
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  9. justy

    justy Donate Advocate Demonstrate

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    I was given prednisolone 30mg a day for lung issues and felt considerably worse in my M.E symptoms. Some issues cleared up - lymph node behind head went down for first time in 7 years, anal pain went away entirely and a few other minor things. But I ahd crushing exhaustion coupled with mild steroid psychosis that made it intolerable as a treatment. I also had severe weight LOSS as I felt really weriud about food while I was on it (14 days).

    After I came off I felt much worse then before I started and it took many months to regain the lost ground. Since then I tired 5 mg pred for asthma and had severe agitation and suicidal ideation on just 5mg.
     
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  10. Eeyore

    Eeyore Senior Member

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    @Woolie - Do you get the impression (or is it too early to tell) that it can induce a remission, which might then last for a time, or that you will need continuous treatment? Do the positive effects wear off very rapidly?

    @justy - Interesting that it made you tired. Steroids are known for making people wired. My great aunt, who was a nurse when she worked, did private duty nursing for cancer patients, mostly blood cancers, and said the patients would be bouncing off the walls and hyper from the steroids. Being tired is very atypical. You might do better on a steroid that crossed the blood brain barrier better, like dexamethasone. Or worse - hard to say...
     
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  11. ukxmrv

    ukxmrv Senior Member

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    Steroids such as Predislone do help me in the short term so I save them for times I need to leave my house. There is a payback of PEM though which is why I don't take them all the time.

    If I increase the dose the "good effect" lasts longer and the PEM crash takes longer to set in.

    Dexemethasone doesn't have any of the good effects even in the short term and I feel poisoned when I took it.
     
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  12. Eeyore

    Eeyore Senior Member

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    Interesting regarding dex. The main diff between dex and prednisone (which is diff from prednisolone, the former being the only one available orally, so I'm guessing you had prednisone) is that dex is longer acting and crosses the BBB.

    Prednisone is used most often by GP's for routine things (e.g. say you have poison ivy). They have more experience with it. Dex is used when you need high concentrations for longer periods - the most common example is chemotherapy for some cancers, but it's also used in rheumatology I think... I know oral corticosteroids are used by rheumatologists for some conditions, but not sure which ones, or why.

    Actually, that would be a good question for Dr. @Jonathan Edwards.

    In rheumatology practice, do you use dex or prednisone or both, and what makes you choose one or the other? What guides your decision making in oral steroid use (in terms of which one you select)?
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    UK rheumatologists almost always use prednisolone. The availability of oral prednisolone and prednisone is different in UK and US. As far as I know we use prednisolone because it is cheap and there is no particular advantage to dexamethasone for rheumatological problems. Dexamethasone tablets are also pretty tiny and may be difficult for arthritics to pick up.
     
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  14. Eeyore

    Eeyore Senior Member

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    Thanks @Jonathan Edwards. It's probably similar in the US.

    Hematologists here use a lot of dex in treating malignancy, but I've never known a GP to use anything other than prednisone (orally) or hydrocortisone in the US. I didn't have enough experience with rheumatology to know.

    I always learned that prednisolone had lousy oral bioavailability (vs prednisone), so was only administered IV, but was about 20% or so more potent mg for mg.

    Dex tablets are often pretty tiny.
     
  15. rosie26

    rosie26 Senior Member

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    Yes, that was what I experienced too, the agitation and I just felt like I wanted to run out on to the main road and end it all, just to get rid of that unbearable feeling inside my body - but of course I knew I had to just wait for it to pass once the tablet wore off. But I got a lot of that similar feeling with the ME which made me liken it - that ramped feeling.

    It's now written in my medical notes not to give me Prednisone.
     
    Last edited: May 13, 2015
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  16. Eeyore

    Eeyore Senior Member

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    Steroids are well known to cause pretty severe agitation. The effect is probably at least somewhat understood, although I can't claim knowledge of the mechanism, but it's pretty much universally reported. I don't think it's usually suicidality though - more likely just agitation.
     
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  17. nandixon

    nandixon Senior Member

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    On @Rebecca2z's thread (e.g., this post), she felt a great improvement from the steroids she was given with her rituximab infusions.

    She has an autoimmune polyglandular syndrome, APECED, marked by anticytokine autoantibodies (to the IL-17 class). But she "only" had ME/CFS, for decades, prior to the APS developing - with the notable exception of also having candidiasis during that time as well.

    Hopefully the rituximab will start working soon for her (I think she's getting close to the 3-month post-treatment mark). I've wondered if she might try long-term dexamethasone or prednisone if the rituximab doesn't work.
     
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  18. Woolie

    Woolie Senior Member

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    This is a tricky one. I've always had a relapsing/remitting pattern to my MECFS, so its often hard to tell what's what. I suspect prednisone's more about relief of symptoms while you're on it. But I do have a hope that just giving my immune system a break from its usually massive hyperresponsive state might also be helpful in the longer term. It seems to me lots of the things that are found in our blood - for example, low or ineffective NK cells - might be caused by immune exhaustion. So there's my hope.

    Pred is first line treatment for a lot of AI diseases, including lupus, crohn's ulcerative colitis, polymyalgia rheumatica, and also MS (in MS, massive doses are often given at the beginning of a flare).

    On the mental side, I had trouble sleeping for the first few nights (maybe first two), but that's gone now. Sometimes, I feel like I want to get things done too quickly. When in a conversation sometimes my words kind of get in the way of each other, and I have to correct myself. Its like a kind of very mild buzzed state. Really mild though. I'm a university lecturer and can still give my lectures, and am still writing good articles, etc, so no real loss of quality there. Oh, and I also feel hot, even when its not.

    Depression has been associated with increased cortisol levels. And there are warnings on the label that some people feel depressed in prednisone. These two things might be connected. But for me, I feel more cheerful than before the pred.

    The positive effects don't wear off. The only other thing I'd want people to know is that its all about dose. When I first tried pred, I did 20mg. That worked for two days and then the symptoms came back. I raised the dose to 40mg, and the symptoms went away and stayed away. Soon I was able to gently drop the dose down 2.5 mg at a time, now on 25mg and still working. Blast-then-reduce seems to be a common strategy with prednisone. Most people who have commented here on PR have probably not taken enough pred to get enough of a reduction in immune activity to get relief.

    @Eeyore, not sure you can tease apart a genuine response to infection from AI disease just from the way a person reacts to pred. Pred will reduce your immune response irrespective of whether its an ineffective one or a really useful one (e.g., the flu). So for example, pred is sometimes give to people with acute mono/glandular who are having a partiuclar bad time with symptoms.
     
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  19. Eeyore

    Eeyore Senior Member

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    Yes true, but prednisone given with infections will suppress the immune system and lead to some exacerbation of symptoms. It's not 100% by any means, but it's about looking at the whole picture and trying to see what makes the most sense.
     
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  20. justy

    justy Donate Advocate Demonstrate

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    Steroids are also well known to cause steroid psychosis, which is far worse then agitation. This is what happened tpo me and now I cant take prednisolone, and uncertain about other steroids. I did not JUST have agitation. I felt like I was dopey, exhausted and at the same time horribly drugged do that reality didn't 'look' right. I had severe racing thoughts and for two weeks felt revolted by food or the thought of eating - I had to be forced to eat tiny amounts and felt disgusting while I was doing it - I couldn't even bear to watch anyone else eating - it just seemed such a horrible thing to do. (I normally love eating).

    Suicidal ideation is not unknown in steroid psychosis. I had to be dosed with valium while I was on them to control the severe anxiety they caused, and I couldn't be left alone as I started to freak out. It was an awful experience. But not being able to take steroids if necessary is also pretty scary when you have fibrosis in your lungs and I poorly working immune system.
     
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