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Dx'd with Addison's and primary wants me to stop HC and take Prednisone. Should I?
Hello, I've been dx'd with Addison's, but I really don't think they know what it is that I have...if, it is PAI or SAI? I've been to 3 different Endos and still not sure what it is that I have.
The first Endo found that my Cortisol was 1 and my ACTH was 2.7 and that was the initial testing, but they did repeat the tests and did an ACTH stem test and cortisol on Am/Pm. Still...my tests were low and they dx'd me with Addison's disease. I think...still not sure what the proper name is and that is bad. So, still looking for a GOOD Endo. :/
The second Endo that I saw...said that I was SAI. But...he just went over the last Endo's blood work. :o I just came right out and asked him what it was that I had, but he didn't do any kind of blood work or anything...to confirm it. So...not going back to him. He must not know what he is doing. I am so confused and just want to know what it is that I have.
Also, I have been dx'd with Lyme disease from Igenex. I know that IT can mimic anything and wonder, if IT isn't doing all the catastrophic mess in my body and messing with my adrenals or pituitary.
I feel that the Lyme has either infiltrated my Adrenals or Pituitary and causing ALL of this to show up. Couldn't that be a possibility? I know that Lyme can go anywhere and do anything that it wants to us. My LYME has NEVER been treated with Antibiotics. Heck, the NL couldn't even find it...but, I got IT bad!!! Also, I have candida and never took antibiotics...WHAT IS UP WITH THAT??
Well, they found the Addison's first in May of '12 and the Lyme Nov. '13.
The first Doc(Endo) even brought up the possibility of me having Cushing's disease. How? Now, I'm really confused. :o
What is so bad is...that I have so many other problems that I can barely walk. I was recently put in the Hospital and tests run to find out what was really wrong. The reason that I was put in was because my Primary had passed away and he was a D.O. that had treated me for my pain, for 7 yrs.. When, he passed...I was stuck seeing his partner and he, the first month took my breakthrough meds and cut them in half. The pain was already bad and barely being covered. The D.O. was prescribing the Norco 10/325 mg. but he put me on 5/325 mg and my pain level was awful and didn't realize how much the 10's were helping that breakthrough pain.
Then the next month, when it was time to fill my Fentanyl patch...just wouldn't fill it. He prescribed something called Flector and my husband asked the pharmacist how they compared and he said that they didn't compare at all and that we would be wasting our money, if we got them. I was so angry and in so much pain. I DIDN'T understand why he would do that and especially, after just getting a NEW dx's of Cauda Equina Syndrome and Sciatica the week before by the tests, in the Hospital. :o But, he didn't care if I was in pain or not!! Just wrong!!! >:o
I had to go to another Doc, in town and he gave me the prescription of the Fentanyl patch...Thank GOD or I would have been in pain and having to go through withdrawals. HOW CRUDE AND RUDE of a so called Doc, to do that to a person who is suffering. I wish he could have felt my pain...then, he wouldn't have done that.
Quick question...can Lyme cause Cauda equina? I think that I've read somewhere...where it can. So, IF I get the Lyme under control...you think that the CES will get better? Or...should I go see a NL or NS? I don't want to lose my legs and already have urinary incontinence BAD and have had two mishaps with bowel incontinence. IS it the Lyme doing that..or the CES?
My question and problem to you is mostly about the prednisone right now. Since, he also gave me a prescription of Prednisone and to stop taking my Hyrdocortisone. WHAT??? When, I asked the pharmacist how that I was going to do that with ADDISON'S?? She said that it would only be a month. A MONTH WITHOUT MY HYDROCORTISONE!?!?! With Addison's...I didn't think that you were suppose to EVER NOT take it. Am I right? Are these people quacks??? I know that I don't EVER suppose to stop taking it...or I could have an adsonian crisis!!
Thanks for any response...just need to know what to be doing RIGHT. :)
God Bless all... ^_^
The first Endo found that my Cortisol was 1 and my ACTH was 2.7 and that was the initial testing, but they did repeat the tests and did an ACTH stem test and cortisol on Am/Pm. Still...my tests were low and they dx'd me with Addison's disease. I think...still not sure what the proper name is and that is bad. So, still looking for a GOOD Endo. :/
The second Endo that I saw...said that I was SAI. But...he just went over the last Endo's blood work. :o I just came right out and asked him what it was that I had, but he didn't do any kind of blood work or anything...to confirm it. So...not going back to him. He must not know what he is doing. I am so confused and just want to know what it is that I have.
Also, I have been dx'd with Lyme disease from Igenex. I know that IT can mimic anything and wonder, if IT isn't doing all the catastrophic mess in my body and messing with my adrenals or pituitary.
I feel that the Lyme has either infiltrated my Adrenals or Pituitary and causing ALL of this to show up. Couldn't that be a possibility? I know that Lyme can go anywhere and do anything that it wants to us. My LYME has NEVER been treated with Antibiotics. Heck, the NL couldn't even find it...but, I got IT bad!!! Also, I have candida and never took antibiotics...WHAT IS UP WITH THAT??
Well, they found the Addison's first in May of '12 and the Lyme Nov. '13.
The first Doc(Endo) even brought up the possibility of me having Cushing's disease. How? Now, I'm really confused. :o
What is so bad is...that I have so many other problems that I can barely walk. I was recently put in the Hospital and tests run to find out what was really wrong. The reason that I was put in was because my Primary had passed away and he was a D.O. that had treated me for my pain, for 7 yrs.. When, he passed...I was stuck seeing his partner and he, the first month took my breakthrough meds and cut them in half. The pain was already bad and barely being covered. The D.O. was prescribing the Norco 10/325 mg. but he put me on 5/325 mg and my pain level was awful and didn't realize how much the 10's were helping that breakthrough pain.
Then the next month, when it was time to fill my Fentanyl patch...just wouldn't fill it. He prescribed something called Flector and my husband asked the pharmacist how they compared and he said that they didn't compare at all and that we would be wasting our money, if we got them. I was so angry and in so much pain. I DIDN'T understand why he would do that and especially, after just getting a NEW dx's of Cauda Equina Syndrome and Sciatica the week before by the tests, in the Hospital. :o But, he didn't care if I was in pain or not!! Just wrong!!! >:o
I had to go to another Doc, in town and he gave me the prescription of the Fentanyl patch...Thank GOD or I would have been in pain and having to go through withdrawals. HOW CRUDE AND RUDE of a so called Doc, to do that to a person who is suffering. I wish he could have felt my pain...then, he wouldn't have done that.
Quick question...can Lyme cause Cauda equina? I think that I've read somewhere...where it can. So, IF I get the Lyme under control...you think that the CES will get better? Or...should I go see a NL or NS? I don't want to lose my legs and already have urinary incontinence BAD and have had two mishaps with bowel incontinence. IS it the Lyme doing that..or the CES?
My question and problem to you is mostly about the prednisone right now. Since, he also gave me a prescription of Prednisone and to stop taking my Hyrdocortisone. WHAT??? When, I asked the pharmacist how that I was going to do that with ADDISON'S?? She said that it would only be a month. A MONTH WITHOUT MY HYDROCORTISONE!?!?! With Addison's...I didn't think that you were suppose to EVER NOT take it. Am I right? Are these people quacks??? I know that I don't EVER suppose to stop taking it...or I could have an adsonian crisis!!
Thanks for any response...just need to know what to be doing RIGHT. :)
God Bless all... ^_^
I know its been a couple weeks since your question about the Fentanyl patch but thought I would post.
I've been on the patches for 9 years and will not use the gel patches, there have been a lot of problems and recalls on them. I switched from Walmart to CVS so I wouldn't have to deal with them.
But, having said that I never had a problem with a leak from unsticking them from my skin or the patch itself. They are a lot thicker than they appear.
You don't say what your dose is but please be aware they can cause severe bowel problems, central sleep apnea and higher doses actually increase pain. Detox is not fun.
I started in Jan. decreasing from 125mcg down 12mcg each month and just stopped at 25mcg. Every month was 2 weeks of withdrawal symptoms I wouldn't wish on anyone. My pain level is now half what it was at the higher dose, I can breath again and my bowels are beginning to work. Plus my brain fog and concussion is pretty much gone unless my Addison's Disease is flaring or I have a migraine.
I hope you find a good doc to handle your pain issues as well as your other conditions.
I've been on the patches for 9 years and will not use the gel patches, there have been a lot of problems and recalls on them. I switched from Walmart to CVS so I wouldn't have to deal with them.
But, having said that I never had a problem with a leak from unsticking them from my skin or the patch itself. They are a lot thicker than they appear.
You don't say what your dose is but please be aware they can cause severe bowel problems, central sleep apnea and higher doses actually increase pain. Detox is not fun.
I started in Jan. decreasing from 125mcg down 12mcg each month and just stopped at 25mcg. Every month was 2 weeks of withdrawal symptoms I wouldn't wish on anyone. My pain level is now half what it was at the higher dose, I can breath again and my bowels are beginning to work. Plus my brain fog and concussion is pretty much gone unless my Addison's Disease is flaring or I have a migraine.
I hope you find a good doc to handle your pain issues as well as your other conditions.
I only tried that patch once - even though I live in pain, I could not tolerate the med. So I had to go off it.
No help sorry.
No help sorry.
Thank you guys so much for your information. LYME IS BAD and then, you have all the co-infections to deal with!! :/ Plus, they found I have a petrusion on my L4-L5...great..more and I know they will want to do surgery.
Just dealing with so much. I found out that the Addison's was caused by the candida. Yep, you heard me correctly. Another words, I wouldn't have had the AI, if I had of had the candida. WOW...it blows my mind. I would have thought that the Lyme would have been the cause and not the candida, but read it in black and white.
Today, I'm so frustrated. Had to put a new Fentanyl Patch on and Walmart ONLY had the gel fentanyl patches and I HATE those. Always afraid that the medication is going to leak out. And...today, while putting the first one on...the end stuck to the medicine part and had to pull and prize it off of it and went ahead and put it on. I was already afraid of it, now I am afraid that there is going to be a leak and the medicine is going to leak out. I've looked all over the net, but can't find anyone else that has posted on it.
OH....I wish that I NEVER had to see those things again or any kind of medication. SO sick of it!!!
Please, if anyone reads this and knows post and let me know if I need to take it off. I don't want it to leak out and worry about it doing it, maybe in a certain position that I lay or something. IT very well could, for it really stuck to it...right where the medicine is. :o Oh..please tell me that it won't leak..please...
Thank you for any response. :)
Just dealing with so much. I found out that the Addison's was caused by the candida. Yep, you heard me correctly. Another words, I wouldn't have had the AI, if I had of had the candida. WOW...it blows my mind. I would have thought that the Lyme would have been the cause and not the candida, but read it in black and white.
Today, I'm so frustrated. Had to put a new Fentanyl Patch on and Walmart ONLY had the gel fentanyl patches and I HATE those. Always afraid that the medication is going to leak out. And...today, while putting the first one on...the end stuck to the medicine part and had to pull and prize it off of it and went ahead and put it on. I was already afraid of it, now I am afraid that there is going to be a leak and the medicine is going to leak out. I've looked all over the net, but can't find anyone else that has posted on it.
OH....I wish that I NEVER had to see those things again or any kind of medication. SO sick of it!!!
Please, if anyone reads this and knows post and let me know if I need to take it off. I don't want it to leak out and worry about it doing it, maybe in a certain position that I lay or something. IT very well could, for it really stuck to it...right where the medicine is. :o Oh..please tell me that it won't leak..please...
Thank you for any response. :)
I found this from Biologo Detox on Lyme Disease (Borreliosis)...
"Borrelia infection can cause a huge range of different health problems. It is known as the ‘great imitator’ as it can mimic or cause a huge range of problems.
These are just a few of them:
Schizoaffective disorder
Multiple sclerosis
Bell’s Palsy
Amylotrophic lateral sclerosis
Alzheimer’s disease
Parkinson’s Disease
Thyroid disease
Hyperparathyroidism
Lupus
Rheumatoid arthritis
Polymyalgia rheumatica
Fibromyalgia
Multiple Chemical Sensitivity
Bipolar disorder
Addison’s disease
Depression
Chronic Fatigue Syndrome/ME
Autism
Chronic Heart Failure
Toxins produced by Borrelia have a particular attraction to fatty tissue, nerve cells and the brain in general. These toxins and neurotoxins cause great disruption and damage to cells, affecting cell function, the release of neurotransmitters, hormone function, enzyme activity and cell receptor activity. For instance chronic fatigue due to Borreliosis can be explained because its toxins block a vital cell calcium channel that is involved in energy processes in the cell."
Hmmmm interesting.
"Borrelia infection can cause a huge range of different health problems. It is known as the ‘great imitator’ as it can mimic or cause a huge range of problems.
These are just a few of them:
Schizoaffective disorder
Multiple sclerosis
Bell’s Palsy
Amylotrophic lateral sclerosis
Alzheimer’s disease
Parkinson’s Disease
Thyroid disease
Hyperparathyroidism
Lupus
Rheumatoid arthritis
Polymyalgia rheumatica
Fibromyalgia
Multiple Chemical Sensitivity
Bipolar disorder
Addison’s disease
Depression
Chronic Fatigue Syndrome/ME
Autism
Chronic Heart Failure
Toxins produced by Borrelia have a particular attraction to fatty tissue, nerve cells and the brain in general. These toxins and neurotoxins cause great disruption and damage to cells, affecting cell function, the release of neurotransmitters, hormone function, enzyme activity and cell receptor activity. For instance chronic fatigue due to Borreliosis can be explained because its toxins block a vital cell calcium channel that is involved in energy processes in the cell."
Hmmmm interesting.
I don't know enough about Lyme to comment. There is a Lyme forum here and I hope they can help you.
If you have AI - you cannot quit cold turkey and go on pred, but you can switch from HC to pred as they are both used for replacements.
Pred lasts longer than HC. So you take less. Look up a steroid calculator and see what the doctor ordered vs what you were taking. Going to pred from HC is easy peasy! Going from pred to HC will require a wean of some sort and will hurt like crazy. Your body may be used to the long acting and will not be as happy with the short acting HC. Hopefully with the pain patch, you won't notice.
If you have AI - you cannot quit cold turkey and go on pred, but you can switch from HC to pred as they are both used for replacements.
Pred lasts longer than HC. So you take less. Look up a steroid calculator and see what the doctor ordered vs what you were taking. Going to pred from HC is easy peasy! Going from pred to HC will require a wean of some sort and will hurt like crazy. Your body may be used to the long acting and will not be as happy with the short acting HC. Hopefully with the pain patch, you won't notice.
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