@vasculitisfoundation thank you. So far, so good. I was recently diagnosed with Secondary Adrenal Insufficiency. My mother also has Secondary with a pituitary tumor. I have been undiagnosed for several years until I realized I should probably be tested since I was feeling EXTREMELY exhausted and started having issues with emergency headaches when things get too emotional. I sort of put the picture together and went to see my doctor. I also have a neuromuscular disease thought to be Spastic Paraplegia -- Complicated; Dysautonomia with tachycardia; along with pulmonary disease. I have an MRI scheduled for next week, so we will go from there. They were trying me without steroids but I kept having headaches due to my stressful lifestyle. We shall see but so far, everything has been unique. Thank you again for your response. Your video is very informative.
@@MoncœrCoyoteSmith Wow, that is a lot to deal with. I hope the MRI provides some answers. We have a more recent webinar on adrenal insufficiency. I am not sure if you saw this one but it might be helpful as well ruclips.net/video/SpklfekRHLc/видео.html
I have secondary adrenal insufficiency after my pituitary tumor was removed. My pituitary no longer works. I am very tired all the time and my whole entire body, bones and muscles just hurt and ache all of the time nobody has answers for me.
How frustrating for you. We hope you find a medical provider who can help you find answers and work with you to create a treatment plan that addresses your concerns. We are a patient advocacy organization for people living with vasculitis and are not medical experts, so unfortunately we are unable to give you any guidance on the questions you have about treatment.
You need to be sent to an Endocrinologist to help and very delicately Rea just your cortisol . to low or to high cortisole levels will make you feel like the life is being sucked out of you. I wanted an endoc- but afraid because some don't know the correct leveling making a gamble for better or much worse. 5 years of torture and hope I recover and the same for you.
Strange you should feel better with the tumor removed but many doctors seem to excuse the insufficiency that comes with taking man made hormones. I also just made an easy statement about adrenal glands adjusting cortisol. a lot more comes with Addisons or adrenal insufficiency Hormones and Immune problems causing other illnesses such as cancer.. But, good news is after having tumor removed and taking steroid will cause you to go through a recovery prosses that sucks and eventually your Adrenals will start working fully. its taking mine years but depends on the condition.
@@robsolo4024I don't remember saying they don't work entirely and if they weren't I would be in Adrenal Crisis because like I said I hoping to stay from the stuff that messed me up in the first place... all you need is a 1 % off and feel like the living dead ! and some feel less like many others have explained. still for many pro's endocrinology- doctors is still a mystery as far as educated practice? depending how all your other organs levels are working and your health entirely. Pituitary being taken out? isn't this a Cushings syndrome which is very relative alike Addisons! your surly taking one or the other and hope its working great for you! Still not recovered fully and getting sick of it. they shouldn't be injecting people Dexamethasone just for poison -ivy risking what makes a person feel alive like life . 👍
This doesn't just happen with high dose steroids. I've been taking 6mg prednisone daily for 6 years and was just diagnosed with SAI although I've been symptomatic for 3. Started becoming symptomatic from a taper of 1mg per month down to 3mg.
Thank u for sharing your experience as well as pointing out SAI can happen even on low dose steroids taken for longer than a few months. Are u continuing to taper down to eventually get off of the steroids?
1 Injection Steroid phsychosses 2 years and 4th year still weak vertigo Depression shaking in moring waking . up to 2 hous. Suicide idiation feeling like death came over.
I took 1 large dose and became so physically emotionally ill for 5 years with some recovery but don't know a full recovery is possible. I had a inflammation from a product . Nurses at Dartmouth medical center were very worried about giving me this injection and now I know why . sometimes I want to just give up its horrible and took my life out of me including my religion as crazy as that may sound.
They can put you in mager depression vertigo steroid phsychosses ostio- in time and death possible. Life shorter and Suicidal idiation. if that is not enough nothing is. 5 years of dead life so far and many have no other alternatives. practical torture to patient for many pros don't know what they are doing. levels are not fugured well enough to but cause more harm than good.
I am 511 240 pounds what would my lowest possible dose be? I’m trying to lose about 20 pounds and being on the stuff is very difficult. I currently take 15 mg in the morning and 10 mg in the afternoon
Great explanations!
Many think of suicide from the horror of STEROID PHSYCHOSSES. you much dead on your own.
I am on low dose daily. I feel it keeps my cortisol in the Goldilocks zone- just right.
So glad you found a dose that is working for you.
@vasculitisfoundation thank you. So far, so good. I was recently diagnosed with Secondary Adrenal Insufficiency. My mother also has Secondary with a pituitary tumor. I have been undiagnosed for several years until I realized I should probably be tested since I was feeling EXTREMELY exhausted and started having issues with emergency headaches when things get too emotional. I sort of put the picture together and went to see my doctor. I also have a neuromuscular disease thought to be Spastic Paraplegia -- Complicated; Dysautonomia with tachycardia; along with pulmonary disease.
I have an MRI scheduled for next week, so we will go from there. They were trying me without steroids but I kept having headaches due to my stressful lifestyle. We shall see but so far, everything has been unique.
Thank you again for your response. Your video is very informative.
@@MoncœrCoyoteSmith Wow, that is a lot to deal with. I hope the MRI provides some answers. We have a more recent webinar on adrenal insufficiency. I am not sure if you saw this one but it might be helpful as well ruclips.net/video/SpklfekRHLc/видео.html
I have secondary adrenal insufficiency after my pituitary tumor was removed. My pituitary no longer works. I am very tired all the time and my whole entire body, bones and muscles just hurt and ache all of the time nobody has answers for me.
How frustrating for you. We hope you find a medical provider who can help you find answers and work with you to create a treatment plan that addresses your concerns. We are a patient advocacy organization for people living with vasculitis and are not medical experts, so unfortunately we are unable to give you any guidance on the questions you have about treatment.
You need to be sent to an Endocrinologist to help and very delicately Rea just your cortisol . to low or to high cortisole levels will make you feel like the life is being sucked out of you. I wanted an endoc- but afraid because some don't know the correct leveling making a gamble for better or much worse. 5 years of torture and hope I recover and the same for you.
Strange you should feel better with the tumor removed but many doctors seem to excuse the insufficiency that comes with taking man made hormones. I also just made an easy statement about adrenal glands adjusting cortisol. a lot more comes with Addisons or adrenal insufficiency Hormones and Immune problems causing other illnesses such as cancer.. But, good news is after having tumor removed and taking steroid will cause you to go through a recovery prosses that sucks and eventually your Adrenals will start working fully. its taking mine years but depends on the condition.
@@trafficjon400 How do you know if your adrenals are starting to work again I do not have a pituitary gland it’s been totally removed
@@robsolo4024I don't remember saying they don't work entirely and if they weren't I would be in Adrenal Crisis because like I said I hoping to stay from the stuff that messed me up in the first place... all you need is a 1 % off and feel like the living dead ! and some feel less like many others have explained. still for many pro's endocrinology- doctors is still a mystery as far as educated practice? depending how all your other organs levels are working and your health entirely. Pituitary being taken out? isn't this a Cushings syndrome which is very relative alike Addisons! your surly taking one or the other and hope its working great for you! Still not recovered fully and getting sick of it. they shouldn't be injecting people Dexamethasone just for poison -ivy risking what makes a person feel alive like life . 👍
This doesn't just happen with high dose steroids. I've been taking 6mg prednisone daily for 6 years and was just diagnosed with SAI although I've been symptomatic for 3. Started becoming symptomatic from a taper of 1mg per month down to 3mg.
Thank u for sharing your experience as well as pointing out SAI can happen even on low dose steroids taken for longer than a few months. Are u continuing to taper down to eventually get off of the steroids?
1 Injection Steroid phsychosses 2 years and 4th year still weak vertigo Depression shaking in moring waking . up to 2 hous. Suicide idiation feeling like death came over.
I took 1 large dose and became so physically emotionally ill for 5 years with some recovery but don't know a full recovery is possible. I had a inflammation from a product . Nurses at Dartmouth medical center were very worried about giving me this injection and now I know why . sometimes I want to just give up its horrible and took my life out of me including my religion as crazy as that may sound.
8:46 First time I've ever heard that.
Yep, that's why if you are taking prescription corticosteroids many healthcare providers will tell you to take your dose in the morning.
I HAVE ADDISIONS DISEASE SINCE 1981 . I STARTED MEDICATION AGAIN FROM THE YEAR 1999. SHOULD I CONTINUE FOR WHOLE LIFE ??🤔🤔🤔
Yes
@@creativefun4710 ...???
@@astrologersriuday1187 You don't have addisons asking these Questions
@@astrologersriuday1187 Addison's means you have no Adrenal Glands and you must have Hydrocortisone injections for life.
23:52
Do corticosteroids alone lower your ANCA score? I cannot find any research which shows this.
They can put you in mager depression vertigo steroid phsychosses ostio- in time and death possible. Life shorter and Suicidal idiation. if that is not enough nothing is. 5 years of dead life so far and many have no other alternatives. practical torture to patient for many pros don't know what they are doing. levels are not fugured well enough to but cause more harm than good.
I am 511 240 pounds what would my lowest possible dose be? I’m trying to lose about 20 pounds and being on the stuff is very difficult. I currently take 15 mg in the morning and 10 mg in the afternoon
You may find this article, from Very Well Health, to be helpful.
www.verywellhealth.com/how-can-i-lose-prednisone-weight-gain-1942985