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Steroids and lyme/co ...are they safe?

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Posted 11/26/2018 10:42 AM (GMT -5)
I've been hearing a lot of split opinions on this one but multiple people and doctors have been telling me that steroids suppress the immune system and shouldn't be taken for lyme + co patients. I personally have been on a small dose of t3 (liothyronine, 5mcg) and hydrocortisone (oral, 5mg) for about 4.5 months now every day. My LLMD's reasoning behind it is because rifampin and rifabutin (one of my abs) causes hormones and other drugs to metabolize faster and thus if not supplemented, many patients exhibit a "adrenal crisis"-like picture after being on rifampin/rifabutin for an extended period of time...

What do you guys think? I keep getting concerned about my steroid intake and have been asking my LLMD when I can be off them, but she doesn't seem too concerned and wants me on them at least for another couple months.

Let me know your thoughts! Thank you!
Posted 11/26/2018 11:00 AM (GMT -5)
I don't know enough about rifampin/rifabutin effect on adrenals (have heard it does affect it), and I know next to nothing about steroids...

Like other lyme patients I tend to have a blind kneejerk reaction when someone mentions lyme and steroids, big no-no (have been conditioned that way). But it sounds like your doctor has experience using these medicines with other patients in the past. I'm guessing they understand the right balance with what they are trying to do, and that the net effect is more positive than negative. Have you been able to find anything searching the archives?

I have heard of other patients being on lower dose steroids while treating (for various reasons). Of course I'd be like you, very nervous about taking steroids because it is generally considered such a big no-no in the lyme community and depresses immune system. Although when used by an experienced practitioner who understands these infections, well I'd be somewhat less worried because they theoretically have a solid strategy and understanding of the pros and cons. But I'd still want to research the issue thoroughly (have other patients done similar protocols, do other doctors use this strategy, etc).

I hope others will be able to offer ideas or insights on the issue.
Posted 11/26/2018 11:03 AM (GMT -5)
Steroids in doses used for autoimmune diseases is contraindicated - it will suppress your immune function and allow the lyme infection to flourish.

Low doses of hydrocortisone to support adrenals is sometimes necessary,
5 mg seems higher than what I’ve seen though. Usually see 1-2 mg I think?
Discuss this with your LLMD - let him know your concerns.
Posted 11/26/2018 1:51 PM (GMT -5)
I remember earlier this year I was taking Flonase everyday and that's when my Lyme really started getting out of control. I was getting rashes, body pains, nerve pain, severe fatigue, etc. And I've tooken Flonase off and on for the past 5 years so I know it wasn't an allergic reaction. From what I know Flonase is a type of steroid spray. And it seemed like it really made the Lyme flourish (like another comment mentioned) in my body. So from personal experience I wouldn't take anything with steroids in it.
Posted 11/26/2018 2:24 PM (GMT -5)

JayPoppa said...
I remember earlier this year I was taking Flonase everyday and that's when my Lyme really started getting out of control. I was getting rashes, body pains, nerve pain, severe fatigue, etc. And I've tooken Flonase off and on for the past 5 years so I know it wasn't an allergic reaction. From what I know Flonase is a type of steroid spray. And it seemed like it really made the Lyme flourish (like another comment mentioned) in my body. So from personal experience I wouldn't take anything with steroids in it.

Some Lyme patients need to support their adrenals and take the low dose cortisone.
Low doses are fine.
If your adrenal glands aren’t working properly - you need to have support - but it should be tested - see if your cortisol is low.
Posted 11/26/2018 2:25 PM (GMT -5)
I've taken steroids for herx and adrenal problems. I didn't have any major problems with it, but keep the dose low. 20-40 mg hydrocortisone, or 1-2 mg dexamethasone per day seems to be okay.
Posted 11/26/2018 3:02 PM (GMT -5)

Quin said...
I've taken steroids for herx and adrenal problems. I didn't have any major problems with it, but keep the dose low. 20-40 mg hydrocortisone, or 1-2 mg dexamethasone per day seems to be okay.

Is 20-40 mg hydrocortisone a low dose? In comparison - what would be the dose to treat autoimmune diseases?
Posted 11/26/2018 4:03 PM (GMT -5)
20 mg hydrocortisone is around the amount your adrenals would produce naturally. So this is considered a fairly safe dose.

The typical dose for immune suppression is much higher, 100mg or more.

Dexamethasone is 20x to 30x more potent than hydrocortisone, so the doses are proportionately lower.
Posted 11/26/2018 4:52 PM (GMT -5)
5 mg of hydrocortisone is very low. Taking it along with rifampin is a smart move because of the CYP enzyme issue.

While on rifampin/rifabutin, Dr M had me on 20-40mg hydrocortisone per day. Before starting he did an ACTH stim test on me and (per usual) both my ACTH and cortisol were low so i need to be on higher doses. Adrenal insufficiency has been my most prominant issue so my cortisol is especially low. I had no adverse effects from the HC. I also take 100mg DHEA and 25-50mg pregnenolone per day for adrenal support. No adverse effects there, either.
Posted 11/26/2018 5:05 PM (GMT -5)

Aerose91 said...
5 mg of hydrocortisone is very low. Taking it along with rifampin is a smart move because of the CYP enzyme issue.

While on rifampin/rifabutin, Dr M had me on 20-40mg hydrocortisone per day. Before starting he did an ACTH stim test on me and (per usual) both my ACTH and cortisol were low so i need to be on higher doses. Adrenal insufficiency has been my most prominant issue so my cortisol is especially low. I had no adverse effects from the HC. I also take 100mg DHEA and 25-50mg pregnenolone per day for adrenal support. No adverse effects there, either.

Is Dr J continuing to prescribe what Dr M prescribed for you?
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