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Should I take the steroids or not? Advice sought

Discussion in 'General ME/CFS Discussion' started by sianrecovery, Sep 14, 2013.

  1. sianrecovery

    sianrecovery Senior Member

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    Hi Peeps

    I'm a long-term MEer, and was doing a lot better on thyroid meds and following Rich's protocol. Then I had a very stressed bit caring for my brother when he was undergoing chemo (and living in a moldy flat).

    I am pretty ill now, and have also noticed a sudden decline in my sight. This led to a recent diagnosis of macular degeneration. I'm back to be hot and cold, night sweats, exhausted, confused. I also have long-term issues with a genetic kidney disorder, protozoan infection etc.

    My ME doc, who I like very much, and respect, has suggested the current manifestation may be partly an allergic/autoimmune response to the bugs I haven't managed to eradicate. She has suggested four months of augmentin, a month of anti-fungals and three weeks of steroids, starting off with a high dose and tapering down. She is very keen on the gut as a means of restoring health, and I don't think she'd suggest this without considering it necessary. On the other hand, having done my parents meds when they were dying of cancer, I am afraid of steroids, and afraid of their effect on underlying infections. Or is it worth the risk to shut off the inflammatory process?

    Would very much appreciate people's thoughts and experience.
  2. Plum

    Plum Senior Member

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    I personally would not take steroids unless I was sure it would help. I think that they mess with your adrenals too much and create long term problems. I have been given a steroid injection recently but I had to do it in order to get to the next phase of treatment - NHS. I think 3 weeks is a long time.

    If it were me, I'd focus on sleep, eating really well (organic, lots of veges), doing some juicing. I don't think our bodies respond well to doing things quickly and I very rarely thing prescriptive drugs help at all - except pain meds. I would then look into natural anti-fungals.
  3. jeffrez

    jeffrez Senior Member

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    Sorry to hear of your troubles. Deciding whether to use steroids is never easy. If it would save my sight, however, I'd probably put that near the top of the list of reasons to do it.

    I can't really second guess your doc, but I would just say that in general the advice for steroids is "go high, and go fast." Three weeks doesn't sound excessively long, but it's not the shortest time, either. Dose packs, for example, are designed for 6 day use. The dosage there isn't super high, only 24mg methylprednisolone, I believe, but even if you doubled or tripled initial dosage, one could still probably do a safe taper in a week or 10 days or so. But if your doc feels 3 weeks is necessary to get the full anti-inflammatory effect, like I said, I can't second guess. Certainly it's not uncommon for people to be on steroids for much longer than that.

    Another thing to think about in regard to steroids and thyroid issues is a thyroid dump. With chronically insufficient cortisol, much of the thyroid hormone just circulates in the blood, without getting into the cell. When you then pump in high doses of steroids, all that circulating T3 suddenly has access to the cell. That can cause typical hyperthyroid symptoms, either mild or severe. So if you have thyroid issues you have been treating with meds, you might need to be aware of that and adjust the dosage when doing the steroids, at least at first.

    You might ask if it would make sense to do an initial shorter course, like a dose pack-sized taper, and if that didn't work then do a larger taper. Given your symptoms, I would probably start higher, though, like maybe at least double (48mg) or even triple and then tapering rapidly. But again, talk everything over with your doc and defer to actual medical advice. From the sound of it, it seems that the steroids might not be the worst idea. Sometimes they're a necessary evil, with the benefits ultimately outweighing the risks. They can really be a lifesaver, and three weeks isn't a huge amount in the scheme of things.

    Just be sure not to crash your adrenals at the back end of the taper. With ME, it's probably better to taper a bit longer at the end, like instead of 4mg medrol down to nothing, more like 4, then 2, then 1, then 1/2, then even 1/4, 1/8, etc., just to be sure your HPAA/adrenals are coming online sufficiently, and then even perhaps augmenting after you're completely off with adrenal cortex extract for a while in case there is any lingering adrenal insufficiency.

    Best of luck, wishing you the best in this. Sounds very difficult, hope you pull through quickly. :)
  4. sianrecovery

    sianrecovery Senior Member

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    That is an incredibly helpful response, for which I am very grateful. I am indeed on T3 meds, prescribed by the same doc, and she hadn't mentioned the potential effect of steroids on them. I take 37.5 mcg liothyronnine daily. I had low cortisol for many years, tested via saliva, but it finally crept into the normal range a year or so ago. It is a difficult decision, and actually, I would feel much more comfortable with a shorter course of steroids than three weeks, having seen how difficult it was for my parents to taper off steroids after comparatively short courses. But, as you say, sight kind of trumps everything. Thanks again.
  5. stridor

    stridor Senior Member

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    My brother who has MD has found macuhealth stabilized the condition.
    maryb and sianrecovery like this.
  6. sianrecovery

    sianrecovery Senior Member

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    Thanks Stridor, will check it out xxxx
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Are you taking the AREDS formula for macular degeneration? If so, watch out for the zinc oxide it contains. My digestive system could not tolerate it.
    sianrecovery likes this.
  8. sianrecovery

    sianrecovery Senior Member

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    Am two weeks in on 20 mg prednisone a day. Start taper off in a couple of days. Been great to be out of pain and have more energy, tho I realise there may well be a price to pay. Sight stabilised, but not returned to previous level of acuity.
    jeffrez likes this.
  9. stridor

    stridor Senior Member

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    Glad to hear that you had a symptom holiday. What price are you expecting to pay? These low physiological doses are not the same as therapeutic doses used to treat active disease. I have been on 25 mg a day for over 2 1/2 years and will not be able to quit (tried 3 times). Mercury took out my adrenals.
    sianrecovery likes this.
  10. sianrecovery

    sianrecovery Senior Member

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    Price to pay I thought would be increased exhaustion etc on stopping. Sorry to hear about your adrenals. I watched both my parents struggle to come off relatively low doses of steroids so I'm not regarding 20 mg as small dose, but thanks for reassurance. Price to pay for staying on I would associate largely with reduced immunity.
  11. Ema

    Ema Senior Member

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    Best wishes for a successful, symptom free taper...glad your sight has stabilized too!
    jeffrez and sianrecovery like this.
  12. sianrecovery

    sianrecovery Senior Member

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    Thanks Ema, for your good wishes and all of your help. You really are a light in the dark xxxx
    Ema likes this.
  13. jeffrez

    jeffrez Senior Member

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    Osteoporosis or osteopenia is another potential effect. I would max out doses of Vit D and calcium while on steroids, and probably for fairly long time afterward, just making sure not to OD. It won't completely prevent bone mineral loss, but it can help reduce it.

    Glad to hear you're stabilizing, hope you continue improving!
    sianrecovery likes this.
  14. sianrecovery

    sianrecovery Senior Member

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    I already have osteoporosis, but I also have medullary sponge kidney, kidney stones, and calcifying kidneys, so calcium is not a go to supp for me. It's present in the Holistic Heal Neurological health formula which I have been taking for Rich's protocol, and I am looking for an alternative.
  15. Wayne

    Wayne Senior Member

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    "My sister at one point was having a very hard time overcoming a very severe allergy episode, with the symptoms becoming life threatening. When I saw her, her whole system looked "devastated", and her sometimes inability to breathe would land her in the emergency room.

    Since I had long suspected she had low cortisol levels, I suggested she try some small amounts of my HC to see if it would help her overcome her crisis. Feeling somewhat desperate, she reluctantly agreed. Much to her surprise, she was markedly better the very next day, and this crisis was soon behind her. -- Very much anecdotal, but I think a relevant story to this thread."
    .....................................................

    Sianrecovery, I posted the above back in January on a different thread, and wonder if trying a short-term dose of low-dose hydrocortisone might have worked well for you. Perhaps something to keep in mind if you're faced with a similar situation in the future. --- I hope things progress well for you... :)
    jeffrez likes this.
  16. Creekee

    Creekee Senior Member

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    Hellooo Sian,

    You may want to try some Vitamin K for the osteo...

    Big hug!
    sianrecovery likes this.
  17. PNR2008

    PNR2008 Senior Member

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    I am facing a crisis and not thinking clearly it is difficult to explain. Two ER visits for extreme POTS landed me in the hospital for 2 days. Most tests were normal while I suffered with extreme fatigue, leg pain, low BP which was brought up by saline infusions. A week later had a nuclear stress test that sent me to the moon while the results showed normal. Was injected with lexiscian (regadin) for 24hrs was wired and tired and in bed all week-end. I am languishing through these tests that are killing me, the results are normal and I know something is more wrong than usual. Why am I surprised, silly me? Back on florinef giving another try. The thing is my symtoms are mimicking Addison's which my aunt had. An ACTH was done on me 20yrs ago when my skin darkened but was normal even though I had thyroiditis. That endro dropped me like a hot potato because of normal results. The cardio says I have to go through my PCP for ACTH test, yet POTS can be a symtom of Addison's. WTF!!! Either way I'll have to go on steroids and I don't do well on Prednisone or Florinef. Right now too weak to organize my health care and I am stuck.
    ahimsa and sianrecovery like this.
  18. sianrecovery

    sianrecovery Senior Member

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    Thanks for the feedback Wayne and Creekee. Steroids clearly have a part to play in managing inflammatory crisis. As for osteoporosis - yes to bit K and I understand strontium and dried prunes (who knew?).
    Very sorry to hear of your current trials PNR - I have always found endo's among the most useless of the docs I've consulted, entirely hampered by a set of by the rote tests that work to a one size fits all philosophy. Found that book by Neil Nathan, On Hope and Healing, helpful for contextualising endo issues.
    Have just done two days on 15 mg pred, have a third day today, then plan three days on 10 mg, then two on 7.5, three days on 5, then three days on 2.5. Already back in pain and tired. Sad to leave my little steroid holiday behind, but have too many infectious disease concerns to stick with it long-term.
    justy, Wayne and Ema like this.
  19. PNR2008

    PNR2008 Senior Member

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    sianrecovery, you made me laugh about your endo statement. Thanks I needed it. Good luck and take care.
  20. sianrecovery

    sianrecovery Senior Member

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    On 10 mg now. Bumpy but tolerable so far. Sad to have the pain back.....

    PNR, endo's seem almost wilfully cruel to me. One of my good friends with ME actually took her life after a particularly contemptuous and devastating consult with one. As we say in the UK, don't let the bastards grind you down.....

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