Depression and being off endocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Depression and being off endocort
let me start by saying I know I am a very lucky person and that I have no real personal reason to feel how I do but boy either I need to increase my prozac, same dose 10 years now or I am having a reaction to being off endocort. I had been weaning ever so slowly off, taking antihistamine and all went very well, I fogot to say I had been on endocort for 1 and a half years mostly on 6 mg the 3 mg then one every other day then down to once a week then one every 10 days etc, then my daughter and I had a short city break to Rome for a long weekend, of course I had a mini flare the day before so after being off endocort for some weeks I took 6mg for 2 days felt better had a great time didnt take any more and forgot all about it, now for my issue, over the last year there have been various emotional stresses in my life but I have coped ok, difficult farming year, friends business, going bust afer 30 years then lately my best friends husband has had a massive stroke and probably will never recover much of himself, all that is sad and depressing but lately I find myself dwelling on everything negative, I am INCREDABLY irritable, have bad joint ache in my hips, usually love to shop for christmas for grandkids and friends etc but this year I have no intrest in it the whole thing makes me cross, normally I love shopping, I seem to be in a delicate remission from the LC but I KNOW and so does my long suffering husband I am not myself, do you think its possible that the lack of endocort is having this effect, if so what do I do??????????????? I really dont want to take endocort to help me off endocort but I am pretty sure my adrenals are not quite right or am I just going nuts, any advise would be a God send. Beni
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mzh
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It sounds like stress is part of it. Just because it isn't your personal stress doesn't mean you won't be upset if something bad has happened to a close friend. But your hip pain isn't from stress. Have you had a good medical exam lately? I have it too on one side but it's from a disk problem. Your problem may be from something else....
I suggest you get a cortisol level check, either blood or salivary, to see if being off the Entocort is a problem or is you simple have low or high cortisol. (Did you have a cortisol test before you went on Entocort? That would be the only way to tell if Entocort might be the cause.)
Entocort probably doesn't have has enough cortisol in it to make a difference in cortisol testing.The Entocort monograph says it won't affect cortisol testing and I believe it. My AM cortisol level while on 3 mg Ento was only 9; the range is 6-25 in my lab. Heck, You might even have high cortisol.
Another thought; winter is coming. Do you have SADD? Lots of people get depressed in the winter.
I suggest you get a cortisol level check, either blood or salivary, to see if being off the Entocort is a problem or is you simple have low or high cortisol. (Did you have a cortisol test before you went on Entocort? That would be the only way to tell if Entocort might be the cause.)
Entocort probably doesn't have has enough cortisol in it to make a difference in cortisol testing.The Entocort monograph says it won't affect cortisol testing and I believe it. My AM cortisol level while on 3 mg Ento was only 9; the range is 6-25 in my lab. Heck, You might even have high cortisol.
Another thought; winter is coming. Do you have SADD? Lots of people get depressed in the winter.
Also have sleep apnea
depression and off endocort
thanks for the reply, yea I am sure stress has something to do with my symptoms but that isnt the issue, my problem is I am not dealing with stress in the way I normally do, this is not just deperession its loads of irritability etc. I spoke to a person yesterday who has UC he said that when he went into remission and stopped the endocort he had EXACTLY the same emotional symptoms as me, when I asked how long it lasted he told me he didnt know as after a while he had to go back on endocort. Tex has there been any reserch done on this? I am pretty sure I have mild adrenal fatigue even if its not caused by coming off endocort Beni
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mzh
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The reactions you're having have been listed in Entocort side effects. I found this on Netdoctor, a UK site but it's probably elsewhere. The red color is mine.
Corticosteroid treatment, especially with high doses, can alter mood and behaviour early in treatment. People may experience confusion, irritability, nightmares, difficulty sleeping, mood changes and depression, and suffer from delusions and suicidal thoughts. In a few cases these effects have also occured when corticosteroid treatment is being withdrawn. For this reason, it is important to let your doctor know if you notice any change in your mood or behaviour during treatment or when stopping treatment, particularly if you begin to feel depressed, or have any disturbing thoughts or feelings. Most of these problems go away if the dose is lowered or the medicine is stopped. However if problems do happen they might need treatment.
Corticosteroid treatment, especially with high doses, can alter mood and behaviour early in treatment. People may experience confusion, irritability, nightmares, difficulty sleeping, mood changes and depression, and suffer from delusions and suicidal thoughts. In a few cases these effects have also occured when corticosteroid treatment is being withdrawn. For this reason, it is important to let your doctor know if you notice any change in your mood or behaviour during treatment or when stopping treatment, particularly if you begin to feel depressed, or have any disturbing thoughts or feelings. Most of these problems go away if the dose is lowered or the medicine is stopped. However if problems do happen they might need treatment.
Also have sleep apnea
Hi Beni,
I'm not aware of any research studies on the association of depression and irritability associated with budesonide (other than what Marcia described), but there are plenty of posts on various IBD boards describing such symptoms as a result of taking budesonide, and there are also a lot of comments about such symptoms occurring during withdrawal from the drug. Apparently it's not a common symptom, but it does happen in some cases. Hopefully, the problem is just transitional, and it will disappear after a while.
Withdrawal symptoms such as that are the norm for withdrawal from prednisone after taking it for a moderate length of time, so it's likely that some people will be affected the same way by budesonide. Budesonide normally doesn't affect the adrenals as strongly as prednisione, but it eventually can have an effect, after extended use. And, of course, many people with MC or some other IBD have adrenal issues just from the disease itself. These usually resolve after remission is reached, but there are exceptions in some cases, where the symptoms may not be completely resolved.
Tex
I'm not aware of any research studies on the association of depression and irritability associated with budesonide (other than what Marcia described), but there are plenty of posts on various IBD boards describing such symptoms as a result of taking budesonide, and there are also a lot of comments about such symptoms occurring during withdrawal from the drug. Apparently it's not a common symptom, but it does happen in some cases. Hopefully, the problem is just transitional, and it will disappear after a while.
Withdrawal symptoms such as that are the norm for withdrawal from prednisone after taking it for a moderate length of time, so it's likely that some people will be affected the same way by budesonide. Budesonide normally doesn't affect the adrenals as strongly as prednisione, but it eventually can have an effect, after extended use. And, of course, many people with MC or some other IBD have adrenal issues just from the disease itself. These usually resolve after remission is reached, but there are exceptions in some cases, where the symptoms may not be completely resolved.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Beni,
I'm kind of not surprised by your stuggles post Entocort. I encountered brain issues (but not anxiety and not depression) after getting off of Entocort. It just didn't feel like by brain chemistry was working right and I even googled adrenal fatigue three times post Entocort. I thought I'd share my experience so you might have a "plan B". My brain struggles were with memory issues, brain fog, and the ataxia. My last Entocort was Jan 15th. Jan thru July I was still having significant issues and was not improving. Around August I added 2000 mcg daily of Methylcobalimin (absorbable B12), 50 mg every other day of P5P Pyridoxal 5 Phosphate (absorbable B6), and 2400 mcg daily of metafolin (absorbable folate). Within 2 weeks I'd had dramatic results. The brain fog that I'd had round the clock for 12 months was significantly better and the ataxia was improved and my mind was clearer. Three months out I'm finally having energy to go out and do evening activities. I still get fatigue here and there but overall the vitamins were a huge benefit.
Before this post I googled depression and anxiety and B vitamins. There are tons of scholarly articles about folks on antidepressants being helped by B vitamins for anxiety and depression concurrently with their antidepressent meds. The b vitamins above are the "absorbable ones." i.e. much easier for those of us with compromised digestion to absorb. I was taking other B's b/f this but flat out did not have the same results. Tex has mentioned these before and in his book talks about the absorbable B12. I just thought I'd mention these so that you might have a "plan B." Again I recommend these formulas--if you decide at some point to try but can't get the formulas in the UK let me know and I'll ship you some as a gift--they helped me that much. In the US there is only one mfg making the metafolin--maybe it is easier to source in the UK.
On days that I don't eat salmon or sardines I'm taking krill oil which I think is also helping with the brain issues. I was taking 1000 mg/day and recently increased it to 2000 mg/day.
Some other things that seem to be helping are eating a lower grain diet. Fats seem to be important. I don't seem to do as well on a lower fat day. For fats I'm eating an avacado every other day, EVOO, ghee (clarified butter and coconut oil.
Lastly for help with stress relief I really like Polly's book recommendation, "Relaxation Revolution," by Herbert Benson MD.
Again my situation was somewhat different but if you google B12 and anxiety and depression and folate and anxiety and depression I think you'll see what I mean. Hopefully you'll improve without this but at least you'll have some other options.
Keep us posted, Brandy
I'm kind of not surprised by your stuggles post Entocort. I encountered brain issues (but not anxiety and not depression) after getting off of Entocort. It just didn't feel like by brain chemistry was working right and I even googled adrenal fatigue three times post Entocort. I thought I'd share my experience so you might have a "plan B". My brain struggles were with memory issues, brain fog, and the ataxia. My last Entocort was Jan 15th. Jan thru July I was still having significant issues and was not improving. Around August I added 2000 mcg daily of Methylcobalimin (absorbable B12), 50 mg every other day of P5P Pyridoxal 5 Phosphate (absorbable B6), and 2400 mcg daily of metafolin (absorbable folate). Within 2 weeks I'd had dramatic results. The brain fog that I'd had round the clock for 12 months was significantly better and the ataxia was improved and my mind was clearer. Three months out I'm finally having energy to go out and do evening activities. I still get fatigue here and there but overall the vitamins were a huge benefit.
Before this post I googled depression and anxiety and B vitamins. There are tons of scholarly articles about folks on antidepressants being helped by B vitamins for anxiety and depression concurrently with their antidepressent meds. The b vitamins above are the "absorbable ones." i.e. much easier for those of us with compromised digestion to absorb. I was taking other B's b/f this but flat out did not have the same results. Tex has mentioned these before and in his book talks about the absorbable B12. I just thought I'd mention these so that you might have a "plan B." Again I recommend these formulas--if you decide at some point to try but can't get the formulas in the UK let me know and I'll ship you some as a gift--they helped me that much. In the US there is only one mfg making the metafolin--maybe it is easier to source in the UK.
On days that I don't eat salmon or sardines I'm taking krill oil which I think is also helping with the brain issues. I was taking 1000 mg/day and recently increased it to 2000 mg/day.
Some other things that seem to be helping are eating a lower grain diet. Fats seem to be important. I don't seem to do as well on a lower fat day. For fats I'm eating an avacado every other day, EVOO, ghee (clarified butter and coconut oil.
Lastly for help with stress relief I really like Polly's book recommendation, "Relaxation Revolution," by Herbert Benson MD.
Again my situation was somewhat different but if you google B12 and anxiety and depression and folate and anxiety and depression I think you'll see what I mean. Hopefully you'll improve without this but at least you'll have some other options.
Keep us posted, Brandy
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mzh
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Brandy, thank you; you just helped me a lot even thought I'm not the OP. I'm on Entocort every other day since 11/1 and I struggle to find the right words although my problems started beforehand. Scallop is the word that comes out when I want to say scaffold, for example. It comes out right after the 2nd or 3rd try but this is vexing. I misplace and can't find things I know I have; it's driving me nuts. I don't think I've had a stroke but sometimes I wonder. The absentmindedness is a big worry.
I'm taking a balanced B and it helps, but not enough and also the methylcobalamin 2000 I think. Never heard of the P5P.
Where do you buy your supplements?
I'm taking a balanced B and it helps, but not enough and also the methylcobalamin 2000 I think. Never heard of the P5P.
Where do you buy your supplements?
Also have sleep apnea
thank you Brandy for your advise, definately going to try the vit B to start with. I am hoping I am not going to have to go back on the endocort but after about 5 weeks now I am starting to have flares again, still at the stage of blaming this food or that situation but have had D at NIGHT, not usual for me 3 nights in the last 6, holding my breath that its not coming back, if it does I wont be depressed due to coming off it I will be depressed having to go on it again !!!!!!!!!!!! will just wait and see, thanks again Beni
Hi Beni,
Hope you do better! Maybe keep the foods simple for a little while. I've found that helpful in flares post Entocort. Also--forgot to mention since I think you live in the UK/northern latitudes--maybe increase your vitamin D a little during the winter. Keep us posted. Brandy
Hi MZH,
I picked up everything at Vitamin Shoppe everything was on the shelf but you can get the stuff on line. Jarrow on the b-12 methylcobalamin but I believe there are a number of options available for this. Solgar for the folate 800mcg metafolin. Solgar for the b-6 p5p pyridoxal-5-phosphate.
The one that I think really helps me with the short term memory issues is the Metafolin. Discussion by another poster here and general on line discussion on neurotalk forum was that users saw results in 6 months. I saw pretty dramatic results in two weeks and still going well after 3 months. I believe the other poster on here is taking 3000mcg metafolin per day as part of the prescription Metanx. I started (actually tapered up to 2400 mcg) of the metafolin and have been taking the 2400 mcg for the last 3 months. Prescription dose for the diabetics with neuropathy has part of Metanx is 6000 mcg metafolin. Metanx is the prescription form for these B vitamins.
I'm 51 so my situation was not a stroke. Last year when all of this started along w/ MC I thought it was due to periomenopause but now I think that my brain issues are mostly MC related with some periomenopausal hormone issues. Who knows?
I work on a keyboard and my symptoms were transposed letters when typing on the keyboard at work--as well as the 12 months of brain fog and ataxia and short term memory issues like you discussed. If I take 2400 mcg of the metafolin I don't have transposed letters when at work. I decided this weekend to try 800 mcg yesterday and today and am having more struggles with typing and memory. I noticed it last night. I'll probably stay on the 2400 mcg thru the holidays and attempt a lower dose after the holidays.
Let me know if you have any questions, Brandy
Hope you do better! Maybe keep the foods simple for a little while. I've found that helpful in flares post Entocort. Also--forgot to mention since I think you live in the UK/northern latitudes--maybe increase your vitamin D a little during the winter. Keep us posted. Brandy
Hi MZH,
I picked up everything at Vitamin Shoppe everything was on the shelf but you can get the stuff on line. Jarrow on the b-12 methylcobalamin but I believe there are a number of options available for this. Solgar for the folate 800mcg metafolin. Solgar for the b-6 p5p pyridoxal-5-phosphate.
The one that I think really helps me with the short term memory issues is the Metafolin. Discussion by another poster here and general on line discussion on neurotalk forum was that users saw results in 6 months. I saw pretty dramatic results in two weeks and still going well after 3 months. I believe the other poster on here is taking 3000mcg metafolin per day as part of the prescription Metanx. I started (actually tapered up to 2400 mcg) of the metafolin and have been taking the 2400 mcg for the last 3 months. Prescription dose for the diabetics with neuropathy has part of Metanx is 6000 mcg metafolin. Metanx is the prescription form for these B vitamins.
I'm 51 so my situation was not a stroke. Last year when all of this started along w/ MC I thought it was due to periomenopause but now I think that my brain issues are mostly MC related with some periomenopausal hormone issues. Who knows?
I work on a keyboard and my symptoms were transposed letters when typing on the keyboard at work--as well as the 12 months of brain fog and ataxia and short term memory issues like you discussed. If I take 2400 mcg of the metafolin I don't have transposed letters when at work. I decided this weekend to try 800 mcg yesterday and today and am having more struggles with typing and memory. I noticed it last night. I'll probably stay on the 2400 mcg thru the holidays and attempt a lower dose after the holidays.
Let me know if you have any questions, Brandy
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mzh
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Thank you again, Brandy! I have a Vitamin Shoppe near me so that's great news. About the stroke thing; one can have a stroke at any age. A local high school boy had a devastating one last year. But I agree that it's most likely the result of MC; I'd sure love to lose the brain fog and letter transposition. (I just had to fix transposition. Argh!)
Brandy, did you have any blood work to test for vitamin deficiencies or did you discover it via trial and error?
Brandy, did you have any blood work to test for vitamin deficiencies or did you discover it via trial and error?
Also have sleep apnea
Strokes are especially dangerous for younger people, because many doctors also don't realize that young people can have a stroke. I have a friend who had a stroke at the age of 38. He managed to drive home, where he crashed his blazer in his driveway. His wife called an ambulance, and despite his pleas with them to take him anywhere but the local hospital, they took him there anyway (liability regulations probably require that).
He told the doctors at the hospital (first in the ER and later in a room) that he was having a stroke, but they refused to believe him, because as they said, "he was too young to have a stroke". Finally, after countless tests and three wasted days of failing to figure out what was wrong with him, they had an ambulance transport him to the hospital in another city, where I always go. After a quick exam, they told him that he had had a "complete" stroke. ("Complete", because it was too late to do anything about it). They pointed out that if he could have come there within less than three hours from the time it began, they could have reversed all the damage.
His left side was paralyzed. After 4 or 5 years, he learned to walk, with kind of a stumbling gait, dragging his left foot, but his arm is useless.
Why he didn't sue the first hospital for malpractice, I have no idea.
Marcia,
Concerning blood tests for "B" vitamins: While it's probably true that I was deficient early on, (prior to and during my recovery), after I began to heal, I took vitamins. When I was diagnosed with Parkinson's disease (because of my gluten ataxia, peripheral neuropathy, etc.), I started taking Metanx. This was in August, 2009. At that point, (before I started taking the Metanx), my B-12 level was 443 pg/mL (normal range 180–914), and my folate level was 15.6 ng/mL (I'm not sure what the normal range would be for folate for that lab, because they only showed a minimum level of 5.2). Anyway, as you can see, my levels were plenty high. I had my B-12 level checked after taking Metanx for 11 months, and it was 903 pg/mL. I had it tested about a month ago, but I haven't gotten around to picking up the results, yet — gotta remember to do that.
After taking the Metanx for 9 months, I had a second TIA (not related to taking the Metanx, LOL), so I had another opportunity to be examined by a neurologist (a different one). My knee and ankle reflexes, and my sense of feeling in my feet, had improved so much that this time the neurologist agreed with me that I did not have Parkinson's disease after all. Obviously, some neurological diagnoses are somewhat arbitrary, with a lot of room for error.
Tex
He told the doctors at the hospital (first in the ER and later in a room) that he was having a stroke, but they refused to believe him, because as they said, "he was too young to have a stroke". Finally, after countless tests and three wasted days of failing to figure out what was wrong with him, they had an ambulance transport him to the hospital in another city, where I always go. After a quick exam, they told him that he had had a "complete" stroke. ("Complete", because it was too late to do anything about it). They pointed out that if he could have come there within less than three hours from the time it began, they could have reversed all the damage.
His left side was paralyzed. After 4 or 5 years, he learned to walk, with kind of a stumbling gait, dragging his left foot, but his arm is useless.
Why he didn't sue the first hospital for malpractice, I have no idea.Marcia,
Concerning blood tests for "B" vitamins: While it's probably true that I was deficient early on, (prior to and during my recovery), after I began to heal, I took vitamins. When I was diagnosed with Parkinson's disease (because of my gluten ataxia, peripheral neuropathy, etc.), I started taking Metanx. This was in August, 2009. At that point, (before I started taking the Metanx), my B-12 level was 443 pg/mL (normal range 180–914), and my folate level was 15.6 ng/mL (I'm not sure what the normal range would be for folate for that lab, because they only showed a minimum level of 5.2). Anyway, as you can see, my levels were plenty high. I had my B-12 level checked after taking Metanx for 11 months, and it was 903 pg/mL. I had it tested about a month ago, but I haven't gotten around to picking up the results, yet — gotta remember to do that.
After taking the Metanx for 9 months, I had a second TIA (not related to taking the Metanx, LOL), so I had another opportunity to be examined by a neurologist (a different one). My knee and ankle reflexes, and my sense of feeling in my feet, had improved so much that this time the neurologist agreed with me that I did not have Parkinson's disease after all. Obviously, some neurological diagnoses are somewhat arbitrary, with a lot of room for error.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Marcia,
It kind of depends on what you mean by blood work before starting. I had my B12 tested in Feb of 2012 it came out "normal" like my previous two lab works I'd had with this disease. Before I started with the B cocktail I had read elsewhere on line about getting preliminary blood work as a base line but I was just too run down to re do blood work again--I figured the Feb numbers would be fine if I ever needed to consult them. I'm going to PCP tomorrow and will get labs again so I'll get my Feb score and keep you posted re both scores. My last Entocort was on Jan 15th 2012 but July 30th 2012 I was still in very rough shape brain wise. I wasn't getting worse but I wasn't getting better. For over a year I could not balance a check book after 3:00 pm in the afternoon. When I have new customers at work I have a form to input them on the computer--now it takes me maybe a minute to input the customer---I'm guessing back then it took me about 25 minutes to input a customer. I guess you could say that I felt so lousy for so long that what did I have to lose.
As a result of this thread I decided to try 800 mcg of the metafolin (folate) this week and I'm doing well on it. It's 10:00 pm at night and I'm not having any transposed letters on the keyboard so that is a good sign.
I think I'll stay with this for 3-4 weeks and try to drop down to 400 mcg of the metafolin (folate) and see how I do. It's almost like the big dose was like a battery that jump started my brain.
There is discussion on the neurotalk forum that others see results at 800 mcg after about 6 months. A dose of 400 mcg would be another conservative option to consider.
I suspect that I responded so quickly to the high dose due to a possible mutation of the MOTHFR gene. (I like typing that). There is some discussion on line that those with a mutation of the MOTHFR gene have issues absorbing B vitamins and that the mutation of MOTHFR gene is seen in families with a lot of mental illness. My brother was diagnosed with bi polar, my uncle schizophenia, my other uncle alzheimers at a young age etc.
14 months ago when the brain issues hit I thought it was periomenopause. Now that some time has elapsed I think my brain issues are mostly due to MC perhaps made a little worse by periomenopause.
I also had memory issues, in my 40's, very similar to those that Jennifer Esposito talks about in "Her Story" on her website. Now I know those were due to gluten.
Hopefully I answered your questions and keep us posted. Brandy
It kind of depends on what you mean by blood work before starting. I had my B12 tested in Feb of 2012 it came out "normal" like my previous two lab works I'd had with this disease. Before I started with the B cocktail I had read elsewhere on line about getting preliminary blood work as a base line but I was just too run down to re do blood work again--I figured the Feb numbers would be fine if I ever needed to consult them. I'm going to PCP tomorrow and will get labs again so I'll get my Feb score and keep you posted re both scores. My last Entocort was on Jan 15th 2012 but July 30th 2012 I was still in very rough shape brain wise. I wasn't getting worse but I wasn't getting better. For over a year I could not balance a check book after 3:00 pm in the afternoon. When I have new customers at work I have a form to input them on the computer--now it takes me maybe a minute to input the customer---I'm guessing back then it took me about 25 minutes to input a customer. I guess you could say that I felt so lousy for so long that what did I have to lose.
As a result of this thread I decided to try 800 mcg of the metafolin (folate) this week and I'm doing well on it. It's 10:00 pm at night and I'm not having any transposed letters on the keyboard so that is a good sign.
I think I'll stay with this for 3-4 weeks and try to drop down to 400 mcg of the metafolin (folate) and see how I do. It's almost like the big dose was like a battery that jump started my brain.
There is discussion on the neurotalk forum that others see results at 800 mcg after about 6 months. A dose of 400 mcg would be another conservative option to consider.
I suspect that I responded so quickly to the high dose due to a possible mutation of the MOTHFR gene. (I like typing that). There is some discussion on line that those with a mutation of the MOTHFR gene have issues absorbing B vitamins and that the mutation of MOTHFR gene is seen in families with a lot of mental illness. My brother was diagnosed with bi polar, my uncle schizophenia, my other uncle alzheimers at a young age etc.
14 months ago when the brain issues hit I thought it was periomenopause. Now that some time has elapsed I think my brain issues are mostly due to MC perhaps made a little worse by periomenopause.
I also had memory issues, in my 40's, very similar to those that Jennifer Esposito talks about in "Her Story" on her website. Now I know those were due to gluten.
Hopefully I answered your questions and keep us posted. Brandy