Good information to know about prednisone.

Thank you for sharing. This all makes sense to me. Why is it that doctors are so focused on “prednisone only” to relieve the symptoms of inflammation. Why do they not get to the root of trying to adjust the cortisol levels in the adrenal gland.? Also anti-inflammatory diets and physical therapy stretch exercises can help.

Actemra worked for me. Now I need to find a way to discontinue Actemra.

I have a new lease on life. I'm trying to address the myriad of other problems I now have in the wake of long term Prednisone use and chronic inflammation. Realistically, I don't expect to cure everything. I just want to feel like I'm going in the right direction.

I know Prednisone was going in the wrong direction for me. Especially true when increasing my Prednisone dose was all I could do.

Thank you for sharing. This all makes sense to me. Why is it that doctors are so focused on “prednisone only” to relieve the symptoms of inflammation. Why do they not get to the root of trying to adjust the cortisol levels in the adrenal gland.? Also anti-inflammatory diets and physical therapy stretch exercises can help.

I’m on Infusion therapy with Actemra, once a month for three months and reducing Prednisone from 10mg to 5 to 2.5 after each session.
After my first Infusion, I had terrible nerve pain in my left hand/wrist ( which suffers from carpal tunnel). Did you have side effects from Actemra, and what are the benefits of Actemra?

So, what can anyone, including docs, do to adjust this cortisol level?
I think it requires testing and close monitoring and most docs don't want to deal with that today. They like pred because it's quick. I don't know how they handle the barrage of complaints about the side effects, which must drive them crazy, and surely they don't have the time to deal with all of them, but that's not my problem. They prob have stock answers at the ready.

At any rate, here's what I found as a first response to the question about how docs adjust cortisol levels:

"Doctors can treat high cortisol levels, also known as hypercortisolism, with medications that control cortisol production in the adrenal glands. These medications include:
Ketoconazole, Osilodrostat (Isturisa), Mitotane (Lysodren), Levoketoconazole (Recorlev), Metyrapone (Metopirone), and Mifepristone (Korlym, Mifeprex).

Medicines to control cortisol production at the adrenal gland include ketoconazole, osilodrostat (Isturisa), mitotane (Lysodren), levoketoconazole (Recorlev), and metyrapone (Metopirone). Mifepristone (Korlym, Mifeprex) is approved for people with Cushing syndrome who have type 2 diabetes or high blood sugar. Jun 7, 2023"

Things we can do to help lower cortisol:

"Here are some things you can do to adjust cortisol levels:
Exercise
Regular exercise can improve cortisol levels in the long term, but some studies suggest that the best intensity level is unclear. The Physical Activity Guidelines for Americans recommend 150 minutes of moderate-intensity exercise and two days of muscle-strengthening activities per week. It's also important to stay hydrated, especially during hot weather.

Stress management
Try relaxation techniques like deep breathing, meditation, or journaling. You can also try spending time with supportive people, taking time for yourself, or setting boundaries in your relationships.

Diet
Eat a balanced diet that includes 30 different types of plants per week, like live yogurt, kimchi, kombucha, kefir, and sauerkraut. Avoid foods that increase cortisol, like caffeine, alcohol, saturated fats, and simple sugars.

Supplements
If recommended by a doctor, supplements like magnesium, vitamin B12, folic acid, and vitamin C can help regulate cortisol levels. "

Getting enough sleep and being out in nature were also suggested.

Best to all.

Excellent response!! There really isn't much that can be done to increase cortisol levels.

The treatment for a low cortisol level is a synthetic cortisol like Prednisone or some other corticosteroid. We just have to hope our adrenal function will improve as we taper our Prednisone dose lower. Most of the time that will happen as long as we aren't constantly increasing our dose. It can be very uncomfortable to taper off Prednisone.

So, what can anyone, including docs, do to adjust this cortisol level?
I think it requires testing and close monitoring and most docs don't want to deal with that today. They like pred because it's quick. I don't know how they handle the barrage of complaints about the side effects, which must drive them crazy, and surely they don't have the time to deal with all of them, but that's not my problem. They prob have stock answers at the ready.

At any rate, here's what I found as a first response to the question about how docs adjust cortisol levels:

"Doctors can treat high cortisol levels, also known as hypercortisolism, with medications that control cortisol production in the adrenal glands. These medications include:
Ketoconazole, Osilodrostat (Isturisa), Mitotane (Lysodren), Levoketoconazole (Recorlev), Metyrapone (Metopirone), and Mifepristone (Korlym, Mifeprex).

Medicines to control cortisol production at the adrenal gland include ketoconazole, osilodrostat (Isturisa), mitotane (Lysodren), levoketoconazole (Recorlev), and metyrapone (Metopirone). Mifepristone (Korlym, Mifeprex) is approved for people with Cushing syndrome who have type 2 diabetes or high blood sugar. Jun 7, 2023"

Things we can do to help lower cortisol:

"Here are some things you can do to adjust cortisol levels:
Exercise
Regular exercise can improve cortisol levels in the long term, but some studies suggest that the best intensity level is unclear. The Physical Activity Guidelines for Americans recommend 150 minutes of moderate-intensity exercise and two days of muscle-strengthening activities per week. It's also important to stay hydrated, especially during hot weather.

Stress management
Try relaxation techniques like deep breathing, meditation, or journaling. You can also try spending time with supportive people, taking time for yourself, or setting boundaries in your relationships.

Diet
Eat a balanced diet that includes 30 different types of plants per week, like live yogurt, kimchi, kombucha, kefir, and sauerkraut. Avoid foods that increase cortisol, like caffeine, alcohol, saturated fats, and simple sugars.

Supplements
If recommended by a doctor, supplements like magnesium, vitamin B12, folic acid, and vitamin C can help regulate cortisol levels. "

Getting enough sleep and being out in nature were also suggested.

Best to all.

I am going to try LDN, if I get up the nerve. I have a doc who is awesome and will prescribe. I've done my research down to what I want my capsule ingredients to be! Some seem to upset folks' stomachs. But I will discuss this with the doc before placing my order with a compounding pharmacy.
It's not a perfect plan but very promising. More and more docs are using it with great success. There will always be side effects with meds whether we feel them or not. Since I can't take steroids, I have opt'd to try this stuff.
CBD is also a possibility. Can't do medical mj (makes me anxious).
Thanks for all your great info on this topic.

I think Dr treating PMR have a pretty tough job. They disease requires long term steroid use.(>two weeks). Its also about the only thing right now that works over night. They try to do some due diligence to make sure its not something else. But they know when they start you on the prednisone it will work over night and you most likely will not be able to taper off. Most testing for how your cortisol is doing requires you be on less than 4mg of prednisone. By then most everyone is having a flare and its almost impossible to reliably test. The patient becomes its own worst enemy. Dr's just try to make it work. I know of no other drug right now that can treat inflammation for PMR as well as corticosteroids. All the things you mentioned are great and yes we should be doing them but how many of us do. The steroid replaces our bodies cortisol. The body has plenty to fight inflammation with this increase in prednisone. Its when you start to taper off the prednisone then you run short because your adrenal system has shut down. All the drugs you mentioned and Cushing's disease are over produced cortisol. Our problem is our bodies have shutdown production or adrenal insufficiency. I know of no other drug that replaces cortisol in our body other than corticosteroids.