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Good information to know about prednisone.
Sometimes the information we receive about prednisone is overwhelming. I stumbled across the following that contains information about Prednisone that doesn't seem too overwhelming.
https://www.ncbi.nlm.nih.gov/books/NBK534809/
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The body does not produce more cortisol to shut down what the body (wrongly) perceives is an attack on itself which prompts a very strong immune response. The body doesn't know it's made an immune reaction mistake and is attacking healthy cells. So we need to add a drug to control the inflammation and pain caused by the attack. That's my understanding.
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?
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1 ReactionSo, 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.
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6 ReactionsI have been on Actemra for 5 years. I started with injections every 2 weeks. I was switched to weekly injections after 18 months. For the last 2 years, I have done monthly infusions. I have had minor lab abnormalities but not anything serious.
I was able to taper off prednisone in 1 year after starting with the Actemra injections. PMR was diagnosed more than 15 years ago and I had many relapses. I was on prednisone for 12 years to treat PMR so getting off prednisone was like a miracle to me. I have been completely off Prednisone for the past 3 years.
I had various problems crop up after I tapered off prednisone. The various problems were attributed to long term prednisone use or were idiopathic. When things happened a workup was done and medical specialists didn't think Actemra caused any of the problems
Subjectively, it seems to me that monthly infusions work the best for me. I have stopped the injections but my symptoms returned. I recently stretched the time to 7 weeks between Atemra infusions but my inflammation markers increased to slightly above normal. I had slightly more pain but nothing severe. When I do Actemra infusions every 4 weeks, my inflammation markers are negligible or practically zero. My rheumatologists wants me to continue with Actemra infusions every 4 weeks and not stretch the time between infusions.
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2 ReactionsI should say here that I believe you have to have had 5 years of treatment for the Reclast to benefit your bones! So far I’ve had only 2 infusions (in 2 years).
The fractures I incurred might of happened even without osteoporosis. I had a car accident in which a woman cut me off and I fractured my sternum ( yes, I had my seatbelt on!)
I slipped and fell and broke my left kneecap in half . Had surgery and they put some rods and pins in to help it heal. After months of physical therapy I’m grateful to be walking without having to use a cane!
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.
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2 ReactionsI 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.
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1 ReactionI dont need to take meds for PMR . Mine is in remission but LDN seems interesting to me. Some have said it doesnt work and it may not. Its meant more for RA type inflammation. But worth a try.
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1 ReactionI read somewhere that when you have adrenal insufficiency and low cortisol levels that you might be able to receive hydrocortisone injections to help boost the cortisol. This is a discussion I will have with my endocrinologist. I have been prednisone free for almost 2 weeks now managing any pain that I have with anti-inflammatory diet, physical therapy exercises and ibuprofen. It feels really good to be off of the prednisone. I am going to have my cortisol level. Tested in about two weeks.