Help my mom! She is on high dose glucocorticoids for an autoimmune disease, should I give her DHEA or pregnenolone?

[Korven]

My mom had an autoimmune flareup earlier this year (temporal arteritis i.e inflammation in arteries) and was put on very high dose glucocorticoids to stop the disease process. The plan is to slowly taper down the drug during 2 years.

I am worried that this problem will just keep coming back and am also worried that her bones will get really weak, along with all of the other unpleasant side effects from taking prednisone e.g cancer risk, dementia, cardiovascular disease, etc, etc.

How can I help her? She is 60+ years old, unjabbed (thank God!), probably hypothyroid and often very stressed out. She has also had rheumatoid arthritis her whole life.

From what I understand, taking prednisone will shut down ACTH production by the pituitary, leading to adrenal involution and loss of protective hormones like DHEA. Basically, you are only left with the harmful effects of unopposed cortisol.

Is it a good idea to give her a replacement dose of DHEA or pregnenolone? Something like 100 mg preg and 5 mg DHEA per day? Or would progesterone be better? Anything that else that could help her?

She is eating robustly (because I have been nagging her about the importance of diet) and is open to trying supplements to help wean off the prednisone/or at least mitigate the harmful effects.

I am super grateful for any advice on this predicament. Thank you.

 

[Hans]

My mom had an autoimmune flareup earlier this year (temporal arteritis i.e inflammation in arteries) and was put on very high dose glucocorticoids to stop the disease process. The plan is to slowly taper down the drug during 2 years.

I am worried that this problem will just keep coming back and am also worried that her bones will get really weak, along with all of the other unpleasant side effects from taking prednisone e.g cancer risk, dementia, cardiovascular disease, etc, etc.

How can I help her? She is 60+ years old, unjabbed (thank God!), probably hypothyroid and often very stressed out. She has also had rheumatoid arthritis her whole life.

From what I understand, taking prednisone will shut down ACTH production by the pituitary, leading to adrenal involution and loss of protective hormones like DHEA. Basically, you are only left with the harmful effects of unopposed cortisol.

Is it a good idea to give her a replacement dose of DHEA or pregnenolone? Something like 100 mg preg and 5 mg DHEA per day? Or would progesterone be better? Anything that else that could help her?

She is eating robustly (because I have been nagging her about the importance of diet) and is open to trying supplements to help wean off the prednisone/or at least mitigate the harmful effects.

I am super grateful for any advice on this predicament. Thank you.

Progesterone has the same anti-inflammatory effects of cortisol, so I'd add high-dose progesterone. Preg can also be useful and perhaps small amounts of DHEA. Something like the 8:1 ratio of cortinon.

 

[Korven]

Progesterone has the same anti-inflammatory effects of cortisol, so I'd add high-dose progesterone. Preg can also be useful and perhaps small amounts of DHEA. Something like the 8:1 ratio of cortinon.

Thank you Hans, your help is greatly appreciated.

I have no problems with experimenting on my own lab rat but feel a little uncomfortable with giving stuff like prog/preg/DHEA to other people... at the same time I feel like I need to do something because chronic exposure to prednisone is really, really bad news.

Not asking you for medical advice or anything, but progesterone will not interfere with the anti-inflammatory effect of prednisone? Just don't want to mess anything up and feel like an idiot. Maybe I should start with just giving her DHEA and see how she gets on with that?

 

[Hans]

Thank you Hans, your help is greatly appreciated.

I have no problems with experimenting on my own lab rat but feel a little uncomfortable with giving stuff like prog/preg/DHEA to other people... at the same time I feel like I need to do something because chronic exposure to prednisone is really, really bad news.

Not asking you for medical advice or anything, but progesterone will not interfere with the anti-inflammatory effect of prednisone? Just don't want to mess anything up and feel like an idiot. Maybe I should start with just giving her DHEA and see how she gets on with that?

I understand. You can always show her doc the studies on the anti-inflammatory effects of progesterone and then let him help administer an appropriate dose and do tests etc.

 

[Vileplume]

Does she take her basal body temperature? It’s always helpful to know, to get an indication of thyroid function.

Based on the long-term arthritis, I think you’re right that she has probably had hypothyroidism for some time.

 

[Korven]

I understand. You can always show her doc the studies on the anti-inflammatory effects of progesterone and then let him help administer an appropriate dose and do tests etc.

Good idea. I am trying to find a more open-minded doctor here willing to test and prescribe DHEA or progesterone etc but it is kind of difficult.

...If all else fails I will have to go the lab rat route, give her 5 mg DHEA x 2 daily or something and keep track of her symptoms.

Does she take her basal body temperature? It’s always helpful to know, to get an indication of thyroid function.

Based on the long-term arthritis, I think you’re right that she has probably had hypothyroidism for some time.

Yeah she says her body temperature is around 36,2 C or 97,1 F so likely hypothyroid. But she typically has very warm hands, warmer than mine so that makes me confused. I thought adrenaline/low thyroid would cause vasoconstriction and cold hands.

Also good point about the arthritis hypothyroidism connection. I think I come from a long line of hypothyroid and stressed people...

I am getting stressed out thinking about the prednisone breaking down her bones with no support from youth-associated protective hormones/androgens. And this will continue for 2 years. Stupid doctors, why can they not just give her replacement doses of these together with the corticosteroids? Now I have to take that responsibility. I already stopped her from taking Fosamax which is a really toxic "bone health" drug (it actually causes way worse bone fractures) and her doctor got mad at her.

Rant over.

 

[Vileplume]

Good idea. I am trying to find a more open-minded doctor here willing to test and prescribe DHEA or progesterone etc but it is kind of difficult.

...If all else fails I will have to go the lab rat route, give her 5 mg DHEA x 2 daily or something and keep track of her symptoms.



Yeah she says her body temperature is around 36,2 C or 97,1 F so likely hypothyroid. But she typically has very warm hands, warmer than mine so that makes me confused. I thought adrenaline/low thyroid would cause vasoconstriction and cold hands.

Also good point about the arthritis hypothyroidism connection. I think I come from a long line of hypothyroid and stressed people...

I am getting stressed out thinking about the prednisone breaking down her bones with no support from youth-associated protective hormones/androgens. And this will continue for 2 years. Stupid doctors, why can they not just give her replacement doses of these together with the corticosteroids? Now I have to take that responsibility. I already stopped her from taking Fosamax which is a really toxic "bone health" drug (it actually causes way worse bone fractures) and her doctor got mad at her.

Rant over.

Yeah, in the most recent Danny Roddy episode, Ray mentioned that widely available prescription pregnenolone could cure most modern diseases, but since it’s not patentable, no companies are interested in formulating it.

However, it’s awesome that you’re taking responsibility for your mom, like getting her to stop taking Fosamax. It probably feels like a battle against the medical system—and it becomes inevitable as we and our families age!

In his Hypothyroidism book, Broda Barnes writes a lot about his hypothyroid patients with low temperature having arthritis.

But it’s fascinating that her hands are often warmer than yours! But yeah, if 97.1 is her mid-day temperature, that is low. Does she drink milk?

 

[EvanHinkle]

Why not try blocking TLR4 with some charcoal? Dose it away from her meds. It’s going to be a pretty benign substance if you’re concerned about getting too experimental.

 

[Phosphor]

Just a comment on pregnenolone, which may or may not be useful. I was taking 90mg of Naturethroid and my free T4 was in range, my free T3 was low, and my TSH was on the low side. I started taking 10mg pregnenolone in the mornings, and "coincidentally" the pharmacy did not bother to call me that my Rx for the thyroid had been filled, so I stopped taking it. And --- holly cow. My lack of motivation is gone, my mood is VERY much better, my energy level is better, and this is WAY better than taking thyroid. Just an anecdote for you. No I haven't done any thyorid tests since I went off the thyroid quite a few weeks ago. Can't see why I should, either. Pregnenolone is OTC and cheap.

 

[Korven]

Yeah, in the most recent Danny Roddy episode, Ray mentioned that widely available prescription pregnenolone could cure most modern diseases, but since it’s not patentable, no companies are interested in formulating it.

However, it’s awesome that you’re taking responsibility for your mom, like getting her to stop taking Fosamax. It probably feels like a battle against the medical system—and it becomes inevitable as we and our families age!

In his Hypothyroidism book, Broda Barnes writes a lot about his hypothyroid patients with low temperature having arthritis.

But it’s fascinating that her hands are often warmer than yours! But yeah, if 97.1 is her mid-day temperature, that is low. Does she drink milk?

Thanks for your support man, I will try to get her that book so she can read it herself. It definitely feels like an uphill battle trying to keep the medical system away from friends and family. I just realized she also got prescribed PPIs so trying to wean her off of those as well...

Yeah she does have milk with her porridge, plus she is eating some yogurt as well so calcium should at least be 1+ grams I believe... which is good!

Why not try blocking TLR4 with some charcoal? Dose it away from her meds. It’s going to be a pretty benign substance if you’re concerned about getting too experimental.

Thank you for that recommendation, that is a great idea! Will see if I can convince her to take charcoal, I remember her seeing me chugging AC once and she asked if that was safe or not

Just a comment on pregnenolone, which may or may not be useful. I was taking 90mg of Naturethroid and my free T4 was in range, my free T3 was low, and my TSH was on the low side. I started taking 10mg pregnenolone in the mornings, and "coincidentally" the pharmacy did not bother to call me that my Rx for the thyroid had been filled, so I stopped taking it. And --- holly cow. My lack of motivation is gone, my mood is VERY much better, my energy level is better, and this is WAY better than taking thyroid. Just an anecdote for you. No I haven't done any thyorid tests since I went off the thyroid quite a few weeks ago. Can't see why I should, either. Pregnenolone is OTC and cheap.

Thank you, that is very useful information :) Will definitely keep it in mind as I think my mom needs some extra help to get her thyroid working.

 

[Rasaari]

When I was on corticosteroids pregnenolone and vitamin D were essential for keeping me sane. Especially D. And that was for a few weeks. Cant imagine 2 years, crazy. How much is the dose?

 

[Korven]

When I was on corticosteroids pregnenolone and vitamin D were essential for keeping me sane. Especially D. And that was for a few weeks. Cant imagine 2 years, crazy. How much is the dose?

Dose started at 60 mg per week and has tapered down to around 10 mg now, then she will stay at like 5 mg for 2 years. All of this sounds ******* stupid to me and there is a relatively high risk of symptoms coming back during the taper. Now she is convinced she has to take alendronic acid/bisphosphonates to prevent loss of bone mineral density because her doctor told her so. And I am having a really difficult time selling pregnenolone and DHEA instead of doctor prescription.

Ugh....... I am so ******* done with medical system. Endless stupidity. But thanks for the tips, I appreciate it. She is taking vitamin D.

 

[Peachy]

Dose started at 60 mg per week and has tapered down to around 10 mg now, then she will stay at like 5 mg for 2 years. All of this sounds ******* stupid to me and there is a relatively high risk of symptoms coming back during the taper. Now she is convinced she has to take alendronic acid/bisphosphonates to prevent loss of bone mineral density because her doctor told her so. And I am having a really difficult time selling pregnenolone and DHEA instead of doctor prescription.

Ugh....... I am so ******* done with medical system. Endless stupidity. But thanks for the tips, I appreciate it. She is taking vitamin D.

How is your mom doing? I’m reading through this as the medical greats are jacking my dad up with chemo and lots of steroids so he can tolerate it better. As a result he’s wired for days after chemo. Ughhhhh.

Did you find anything particularly helpful? I need to get him on progesterone ASAP and will probably do so next week.

 

[Korven]

How is your mom doing? I’m reading through this as the medical greats are jacking my dad up with chemo and lots of steroids so he can tolerate it better. As a result he’s wired for days after chemo. Ughhhhh.

Did you find anything particularly helpful? I need to get him on progesterone ASAP and will probably do so next week.

Thanks for asking @Peachy. She is doing well at the moment but is still on 5 mg prednisolone and I think it will be a 1 year long taper before she gets off them. We ordered some blood tests and not surprisingly her DHEA levels were tanked, but she didn't want to experiment with more hormones like pregnenolone, progesterone or DHEA, which is understandable. At least I managed to get her to stop taking the prescribed PPIs (which are terrible for bone health) and NOT take alendronate which seems like the most sketchy invention ever by big pharma, it's an osteoporosis drug that causes so-called "atypical femure fractures" where the femur snaps in half randomly.

Sorry to hear that about your dad. My mom was also wired when she took the 60 mg dose at the beginning of the disease onset, she felt horrible. In theory DHEA and pregnenolone and progesterone should help mitigate some of the negative effects of glucocorticoids. But I didn't do any experiments on the lab rat... uhm, I mean my mom.

 

[youngsinatra]

My mother got diagnosed with rheumatoid arthritis after she was taking 100mg of zinc per day for a couple months in 2020. She got very copper deficient (with anemia) and her joints began to inflame like crazy. She also felt extremely fatigued, short of breath, depressed and cold all the time.
I think the RA came up due to copper deficiency induced iron dysregulation — causing inflammation in various tissues. She needed some crazy immunosuppressive injections weekly and high dose cortisone to manage the inflammation, which had side effects, like insomnia, weight gain, water retention,

She got off zinc, ate a good organic whole foods diet and after 6-7 months she felt way better, with almost no pain. She got off all medications for a few more months and then revisited the doctor, who basically said that she has no signs of RA anymore.

She also discovered that certain trigger foods (for her it’s gluten, eggs, dairy and pork) can cause moderate-severe flare ups, with gluten being the most severe one and the other ones being moderate. She also has celiac, but that has been diagnosed long before the RA.

Interestingly I also react exactly the same to those trigger foods and I get RA symptoms by eating them. I also have celiac disease. So probably have gotten a good portion of my mother genetic material. :P

She also tried getting her vitamin D up to 75ng/ml but that did not really helped her one bit according to her. She also tried omega 3 high dose with only limited effect.

 

[Peachy]

Thanks for asking @Peachy. She is doing well at the moment but is still on 5 mg prednisolone and I think it will be a 1 year long taper before she gets off them. We ordered some blood tests and not surprisingly her DHEA levels were tanked, but she didn't want to experiment with more hormones like pregnenolone, progesterone or DHEA, which is understandable. At least I managed to get her to stop taking the prescribed PPIs (which are terrible for bone health) and NOT take alendronate which seems like the most sketchy invention ever by big pharma, it's an osteoporosis drug that causes so-called "atypical femure fractures" where the femur snaps in half randomly.

Sorry to hear that about your dad. My mom was also wired when she took the 60 mg dose at the beginning of the disease onset, she felt horrible. In theory DHEA and pregnenolone and progesterone should help mitigate some of the negative effects of glucocorticoids. But I didn't do any experiments on the lab rat... uhm, I mean my mom.

An osteoporosis drug that causes femurs to snap in half. Lord help us all. You’re being a great support. Nice job on the PPI!

I’m focused on keeping my dad from having major nutrient deficits. I can’t stop the chemo-steroid spiral because he’s adamant. But at least he takes his supplements religiously (mostly LifeBlud magnesium and b’s). I’m getting some organ meats/marrow into him to help with hemoglobin and all the other good stuff.

He’s actually gained a healthy 10 pounds while being pounded with chemo for months which is almost unheard of. And he has all his hair!

 

[peter88]

She also discovered that certain trigger foods (for her it’s gluten, eggs, dairy and pork) can cause moderate-severe flare ups, with gluten being the most severe one and the other ones being moderate. She also has celiac, but that has been diagnosed long before the RA.

Do you know what mechanism would cause eggs or pork to cause these issues? Is it an allergy?

 

[youngsinatra]

Do you know what mechanism would cause eggs or pork to cause these issues? Is it an allergy?

Some say it’s due to it’s high arachidonic acid content.

 

[Korven]

Bad news:

My mom was going to wean off the prednisone but had a high CRP test (20) - so she is instead going to increase her prednisone dose again to 10 mg (from 2.5 mg).

Good news:

I convinced her to start taking 50 mg pregnenolone each morning. Hopefully this will replenish adrenal reserves (especially DHEA which is low in untreated GCA patients) and also help her wean off the prednisone at some point. We had her do blood work and her DHEA was basically non-existent, which obviously is very bad with unopposed high cortisol ...

"We have recently demonstrated that DHEA is a potent inhibitor of IL-6, which confirmed an earlier study in mice. Since IL-6 is an important factor for B lymphocyte differentiation, the missing down-regulation of this cytokine, and others such as TNF, may be a significant risk factor in rheumatic diseases." Replacement therapy with DHEA plus corticosteroids in patients with chronic inflammatory diseases--substitutes of adrenal and sex hormones - PubMed

She is eating a pretty good diet and is avoiding gluten (I even got her to avoid nightshades as a diet experiment) so I'm not sure what else to try. Thyroid maybe?

 

[Korven]

Doctors as always completely useless. Don't have any answers except increasing prednisone dose and hope things get better.