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Should steroids be avoided?

Discussion in 'Pain and Inflammation' started by Zuriel, Jan 29, 2013.

  1. Zuriel

    Zuriel

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    Today, my ENT doctor prescribed 5 days supply of oral Prednisolone followed by 6 weeks of Nasonex
    spray to reduce sinus congestion/ post nasal drip. Just wondering what effects will these have on those of us with me/cfs. Any input will help me make an informed decision. Nasal washes helped reduce the foul odour from the drip.
  2. ukxmrv

    ukxmrv Senior Member

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    The Pred was initally very good but then made me more and more hyped leading to a terrible crash.

    What dose has your doctor prescribed?

    I get terrible sinus infections but use a nasal wash with tea tree and sea salt to keep it largely under control. Some times I need doxycycline for the infection.

    The pred/nasal spray combo has never done anything to help with this problem for me.
  3. Ema

    Ema Senior Member

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    Have you been tested for MARCONS? This is a type of staph infection that is common in those with compromised immune systems. The test is a swab up the nose for culture and treatment is an antibiotic nasal spray.

    If you have a chronic case of sinusitis, you might want to try a two week course of something like Augmentin and/or Clindamycin which both work well on anaerobic bacteria (which is usually what nasal infections are caused by).

    Do you have a colored or clear discharge?

    The steroids are not going to be a long term solution for you though they may make you feel better temporarily due to the anti-inflammatory effects. Bottom line, if you have an infection, you need antibiotics. If you have some amount of low adrenal reserve, you may need steroids. But you would not know this without proper testing (saliva cortisol and/or ACTH stim test) and taking high doses of steroids long term in definitely not good for the immune system overall.

    Ema
    heapsreal likes this.
  4. Dreambirdie

    Dreambirdie work in progress

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    When I have sinus infections, I use nutribiotic nasal spray with grapefruit seed extract. It works great for me. Also, doing regular netti pot rinses with salt water can be very helpful.

    As for prednisone, one word comes to mind: YIKES! I have had absolutely HORRIBLE reactions to steroids and would never ever ever consider taking them again.

    Good luck with whatever you decide.
    MishMash likes this.
  5. Patrick*

    Patrick* Formerly PWCalvin

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    I've had a doctor tell me that under no circumstances should I try steroids for ME/CFS. This was early in my journey, so I didn't ask a lot of follow up questions...I wish now I'd asked.

    I think the main thing to keep in mind is that steroids reduce inflammation and suppress the immune system. Sometimes the reduced inflammation makes us feel better, but the suppressed immune system is not necessarily what we want. There are multiple aspects of the immune system (see the Th1/Th2 model) so, while you many benefit in the short term by suppressing an overactive Th2, in theory, you could do damage by also suppressing the Th1 side (which is already suppressed in many PWMEs). I'm just speculating here, but I believe I've read this ^ somewhere...

    Here are some other threads from around the internet:

    http://abreathofhope.blogspot.com/2006/08/oral-steroids-for-mecfscfidspvfs.html

    http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=572261

    http://forums.phoenixrising.me/index.php?threads/ms-treatment-steroids-and-me.18932/
    Zuriel and Wayne like this.
  6. Ema

    Ema Senior Member

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    The suppression is only true of HIGH doses of steroids, not physiological doses. Physiological doses of cortisol actually improve the immune system of those that are low. But the only way to know if the level is low is by proper testing (saliva cortisol or ACTH stim test).

    Ema
    Valentijn and heapsreal like this.
  7. Dreambirdie

    Dreambirdie work in progress

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    Not in my case! The effect of taking hydrocortisone (as I have written about extensively on other threads) proved to be COMPLETELY detrimental to my adrenals and my immune system. I took it for only six weeks back in 2009, and it led to a major crash (as bad as being struck by lightning!) that has lasted for four years, so far. It was the ***WORST*** thing I ever took. Like an F-4 tornado ripping through my life and destroying all the progress I had achieved up to that point.

    And btw, I did all the proper testing, which indicated I was low in cortisol. But now I realize that much of this cortisol problem is due to blocks in my methylation pathways, which are affecting my HPA axis. Working with that is a much safer way to go.

    I know there are people who claim to have done well with HC, and good for them. They played with fire and didn't get burned like I did.
    MishMash, taniaaust1 and jeffrez like this.
  8. jeffrez

    jeffrez Senior Member

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    Going off prednisolone is what caused me to develop CFS, and also led to some persistent stomach problems. Steroids can be life saving, but should be avoided if at all possible. If one does have to go on them, careful tapering is absolutely essential to avoid crashing or getting worse, including probably 3 to 6 months of adrenal cortex afterward to complete the taper. Even then you might have weakened your adrenals, perhaps permanently.
    MishMash likes this.
  9. Ema

    Ema Senior Member

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    I don't claim to have done well. I HAVE done well thanks to appropriate testing and lots of trial and error with steroid formulations and dosing. The ones who don't do well usually are lacking one or the other and unfortunately have not had the opportunity to improve and so continue to decline. The body cannot mount an immune response without the endocrine system!
    sianrecovery likes this.
  10. Dreambirdie

    Dreambirdie work in progress

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    I was not referring you, Ema. It was actually Wayne I was thinking about. He has written about his positive experiences with HC several times. I am sorry that you have not had more improvement.

    My point is that whoever takes steroids should be ***EXTREMELY CAREFUL*** because they have the potential to make you much much worse. In my case HC was the next best thing to total hell. I would not go there again.

    Over and out ~~~DB
    MishMash likes this.
  11. Wayne

    Wayne Senior Member

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    Hi Zuriel,

    I think it's always best to avoid taking medications/drugs if at all possible. For some, doing various sorts of sinus rinses can help considerably, or even completely clear up a troublesome sinus situation. --- I myself have done a technique, known by various names, such as Nasal Specific and NCR. The different names reflect certain variations, but the technique most often used conventionally by ENTs is called Balloon Sinuplasty, and works extremely well for some people. Here's a link to a 1-minute video briefly describing it:

    Balloon Sinuplasty Explanation

    In some cases, they've discovered that properly draining the sinuses can have a profound effect on brain function, with some literature making references to "rehydrating the brain", and improving various forms of hypopituitarism. Makes me think about the HPA axis dysfunction many of us deal with, and whether one aspect of it may lie in our sinuses.

    There's quite a lot of information online if you do a google search on some of the above terms.

    Best Regards (and good luck), Wayne
    Zuriel and jeffrez like this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    the idea of steriods/prednisone etc for sinusitis is to reduce swelling of the sinuses and allow them to drain and help remove bacteria that have built up. I think one still needs a few weeks on antibiotics to clear things up. Problem with chronic infections we have from a crappy immune system is that thye keep returning, so the above treatments are needed when they flare up. saline sprays etc can hopefully help reduce the bad flare ups??
    It does seem from what i have read that those with low adrenal function can improve immune function with low dose cortisol.
  13. Zuriel

    Zuriel

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    Thank you all for your extremely informative and helpful responses.
    The prednisolone prescribed is 25mg x 5 days and Nasonex 100mcg/spray each side. If these fail, he'll recommend
    that I go for polypectomy to remove a nasal polyp. After the procedure, I have to stay on steroids for another 6 months.
    Very scary. My adrenals are not in good shape, so I shall go for the non-steroid route. Balloon sinuplasty is a safter
    alternative due to the close proximity of the brain to the sinuses.
    Glad I asked. Thanks gain. :thumbsup: :thumbsup:
  14. ramakentesh

    ramakentesh Senior Member

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    I think they work wonders.
  15. Ema

    Ema Senior Member

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    Regardless of who you were referring to, this thread is about the use of steroids with regards to sinus infections which we all seem to agree is likely not the best plan of attack.

    As far as hypocortisolism in ME/CFS, when one has been low in cortisol for some extended period of time, the body becomes extremely adept at squeezing every last drop of cortisol out of the system. The cortisol receptors are upregulated to take advantage of any cortisol that comes by. Because of this, the transition onto cortisol replacement can often be quite uncomfortable and requires some amount of knowledgeable management and trial and error with different forms and doses.

    It's similar to what happens when one with anorexia starts eating again. The body isn't quite sure how to process food anymore and this can cause terrible symptoms. But the answer isn't to call food the enemy of the anorectic and starve to death any more than cortisol is our enemy when, in fact, they are both essential for life.

    Ema
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  16. Ema

    Ema Senior Member

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    Goldenseal works really well on chronic sinus infections as well. In many cases, it can eliminate the need for antibiotics.

    Also, make sure to use distilled water for any nasal rinses to prevent infection.

    Ema
  17. Dreambirdie

    Dreambirdie work in progress

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    This is all speculation. It sounds good in theory, but theory and reality are 2 very different things. In my case, buying into this kind of theory caused one of the worst crashes of my life. I am still recovering from it, FOUR YEARS LATER. This is why I urge people to be extremely careful.

    As for the anorexia and hypocortisolism comparison... that is WAY too far of a stretch. I have never heard of an anorexic having a multi-year crash from eating food. o_O But I have heard of many people getting into serious trouble with HC, even if they started slowly and titrated up.

    If someone is getting good results from HC and finds it helpful, all the more power to them. I was NOT one of those people.

    Peace out.
  18. jeffrez

    jeffrez Senior Member

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    Speaking of goldenseal, this may or may not be useful:

    http://www.herbcraft.org/survivingsinusitis.html

    You should talk to your doc about getting a nebulizer. You can shoot antibiotics, antifungals, steroids if needed up into your sinuses without having to take them systemically. That might be enough to eradicate a lingering infection, then maintain with neti pots, Xlear spray, etc.
  19. Research 1st

    Research 1st

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    Should steroids be avoided? Good question. If you have normal blood pressure I would say on balance, yes. If you don't and can barely stand up but have the muscle strength and energy levels to, but are disabled by OI, you could consider it perhaps.

    There have been reports over the years of the medication Florinef (Fludrocortisone) making some people with ME CFS worse though. This would at first seem contradictory as cortisol is often reported to be reduced in CFS research studies. One can conclude/presume from this that for some reason when you have ME CFS the body needs cortisol to be lower. Potentially this could be that ME CFS patients have a hormone sensitive infection that replicates in the presence of steroids including androgens, thus making patients worse, over time. Certainly If we think of the age of onset of ME CFS sufferers and who is affected most severely, then adolescents and young adults seem to be especially affected by severe grade CFS. These are a group of people with very high hormone levels compared to people in their 50's, who in the majority, are often less severely affected. Maybe food for thought there when considering the option of starting corticosteroid or indeed taking testosterone if you're male or HRT if you're female.

    A better drug for ME CFS if you have severe OI disabilities, in my view, and want to boost your orthostatic function is Midodrine (Gutron). This is often used for POTS or for those with low blood pressure on standing, such as syncope disorders, and OI found in conditions with CNS damage. The benefits of Midodrine is it isn't a corticosteroid, however, it does have some unpleasant side effects.

    Getting a prescription to this medication is not routine. Unfortunately, Midodrine requires the permission of a specialist to order it. Take it in a safe environment to see if you can tolerate it (It constricts blood vessels and may cause chest pain and very high BP). You also cannot take the medication and lay down flat afterwards (risk of supine hypertension), so not very useful for those who are bed ridden which is ironic as its the only drug I can think of to literally be able to make people who cannot sit or stand upright, do just that.
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  20. sianrecovery

    sianrecovery Senior Member

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    I recently did a short course of pred at 20mg daily for two weeks, and a two week taper. It was for a sight issue. It worked, though of course that may reverse. I am ok the other side of this (not worse anyway). I also did an ultra-low dose of HC cream for a year under the guidance of my ME a few years back, and my cortisol back in normal range.
    I cared for both my parents thru terminal cancer, and they had pretty bad issues with the prescribed steroids. My mother in law had a stroke partly induced by their use for her rheumatoid arthritis. They are not drugs to use lightly, but sometimes the risk is worth it I think.

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