Do you have depression/anxiety as well as autoimmune illness?

Posted by juliess @juliess, May 20, 2023

So for those of you with autoimmune illness and mood/anxiety issues, how do your doctors manage your care? How’s it been for you?

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@grammy82

Does the Humira come in a pen form or does it have to be a deeper injection? I'm not familiar with it at all. I've been on Actemra which is in a painless pen that just breaks the skin. Thanks💞

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Hi, Grammy82,
Yes, Humira comes in pen form, so you never have to see the needle unless you go looking for it after the shot, which I don't recommend. : ) (That last part was a joke to lighten our day)

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@marymaryoregon

My depression/anxiety (once explained to me as two sides of the same coin) diagnosis and treatment started decades before I could pinpoint any autoimmune symptoms. I had previously had one big relapse of depression too over the years. So I kind of think, for me, my most recent terrible relapse went right on the list along with the physical symptoms I was having- it was pretty high on the list because mind and body are interconnected and fixing the physical without the mental seems silly. I went to my PCP with my list (crushingly awful relapse of depression right at the top) and asked for referrals- psych consult to adjust meds and therapy referrals got going right away. Med adjustments were really helpful along with getting back in therapy. Fixing my awful depression - lifting that fog - didn’t make my physical body feel much better, but my capacity to deal with the way I felt was so so so so so so much better!

Unrelated to your actual question, but interesting nonetheless. I feel like when I was early in my nursing/nurse practitioner education that the “serotonin imbalance” was the theory out there for what was physically happening in the body/brain with depression. That model has been thrown out the window! The shortest answer is that biomedical researchers are still searching for the physical changes that either cause- or are caused by- depression. Here are some interesting (albeit narrowly focused) findings I have come across in medical research reading: 1) low iron levels (as measured by ferritin) can worsen or trigger depression, even if the person does not have anemia (yet) 2) autoimmune disorders are pretty strongly associated with depression and 3) there seem to be some people who have an association between chronic inflammation and depression (does the inflammation make changes that lead to depression or do the physical changes of depression induce inflammation?? No one knows!).

It’s fascinating stuff and the only things I do know- down to my bones- is that you cannot think, or will, you’re way out of depression. You don’t have depression because you are “weak”. Depression is a complex and heterogenous disease - it can look and few different across different people. There are treatments and you can feel better.

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Hi Mary Mary Oregon,
That was a great, informative reply!
I thought the serotonin angle was still current. Thanks for that update!

What do you think of this? I was "gas-lighted" about my autoimmune disease for more than 30 years, by doctors and -worse- by my family. To be fair, though, they knew even less back then. I am sure that the gas-lighting contributed to my depression and anxiety back then. Or, do you think the depression and anxiety were completely the function of my autoimmune disease? They still persist now, post diagnosis and with treatment.

Curious, isn't it?

Hope you have a chance to reply. Thanks! And good health to all who may read this post.

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@blossomgirl

Oh, by the way, ive3never given myself injectables before... and for the record, I have long had a situation with needle phobia since I was a child. So this will be interesting.

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Blossomgirl,
You are asking great questions! I am pretty sure that you can get a lot of information from the manufacturer's website. Google "humira," and ONLY look at the official patient website to get information. As I bet you know, there is a lot of un-useful, confusing information on the internet.

I do remember using the official patient website. I think there is a phone number or a chat link that patients can use to talk to nurses and trained people.

I'm pretty sure that there are videos on their website about how to give yourself the shot.

This Mayo clinic patient site is monitored by volunteers for "bad" information, so this is a pretty safe place to get information. But remember that even here, the people who post are not doctors. Be careful out there on the internet. Only use good sources, like Mayo Clinic.

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@annewoodmayo

Hi, Grammy82,
Yes, Humira comes in pen form, so you never have to see the needle unless you go looking for it after the shot, which I don't recommend. : ) (That last part was a joke to lighten our day)

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@annewoodmayo My day is lightened...thank you! I love the pen for my Actemra....and no peeking, I agree💞.

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@annewoodmayo

I NEVER EVER saw the needle with the humira pen. I don't know if I have a needle phobia... I never ever look! Haha (That's to make fun of me, not of you : ) )

infections- I was a high school teacher at the time, so I did catch colds, etc, but nothing serious. I had no other side effects-- except to feel better!

pain- As I mentioned before, humira has been reformulated and the needles are shorter, so my experience may not be typical anymore.
It usually hurt about as much as a flu shot. It usually only hurt for as long as the needle was in me ( 30 seconds or a couple of minutes?). The spot felt bruised for a few days- no big deal at all. When I did the shot in the abdomen, I was careful to aim at a spot that would not be under the waistband of my pants, where it would have been irritated.
Areas- The abdomen is supposed to be the most effective. I have stretch marks all over my abdomen from having children. It was virtually impossible for us to find a clear spot there, so we usually used the upper thigh. I never had one in the back of my upper arm.

No medicine has ever put me into remission, but humira and remicade helped me the most. I have been on at least 9 or 10 or more medications. But, as I mentioned before, these medications are magic for some patients and not-so- helpful for some other patients.

My husband trained with me at the doctor's office on how to give the shot. He usually gave it to me, mostly because my hands weren't agile and strong enough to hold the skin and hold the pen.

A few times, it was extremely painful (like hit-a-nerve blinding pain), but that was only a few times over the course of 2 or 3 years. And, maybe, my husband was squeezing my skin really hard-- God bless him.

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You have a positive and realistic attitude...that makes such a difference. It has been three years of prednisone and Actemra for me...what we get is better management and improvement!!
I wish I could give you a few of my 'love handles', which makes it really simple...and no pinching by an overzealous husband...bless him!!💞

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@marymaryoregon

My depression/anxiety (once explained to me as two sides of the same coin) diagnosis and treatment started decades before I could pinpoint any autoimmune symptoms. I had previously had one big relapse of depression too over the years. So I kind of think, for me, my most recent terrible relapse went right on the list along with the physical symptoms I was having- it was pretty high on the list because mind and body are interconnected and fixing the physical without the mental seems silly. I went to my PCP with my list (crushingly awful relapse of depression right at the top) and asked for referrals- psych consult to adjust meds and therapy referrals got going right away. Med adjustments were really helpful along with getting back in therapy. Fixing my awful depression - lifting that fog - didn’t make my physical body feel much better, but my capacity to deal with the way I felt was so so so so so so much better!

Unrelated to your actual question, but interesting nonetheless. I feel like when I was early in my nursing/nurse practitioner education that the “serotonin imbalance” was the theory out there for what was physically happening in the body/brain with depression. That model has been thrown out the window! The shortest answer is that biomedical researchers are still searching for the physical changes that either cause- or are caused by- depression. Here are some interesting (albeit narrowly focused) findings I have come across in medical research reading: 1) low iron levels (as measured by ferritin) can worsen or trigger depression, even if the person does not have anemia (yet) 2) autoimmune disorders are pretty strongly associated with depression and 3) there seem to be some people who have an association between chronic inflammation and depression (does the inflammation make changes that lead to depression or do the physical changes of depression induce inflammation?? No one knows!).

It’s fascinating stuff and the only things I do know- down to my bones- is that you cannot think, or will, you’re way out of depression. You don’t have depression because you are “weak”. Depression is a complex and heterogenous disease - it can look and few different across different people. There are treatments and you can feel better.

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Before having my GCA and losing sight in one eye... I had two bouts with depression; 18 months earlier and 15 years.
My life changed on a dime that day in 2019. Initially, with so much prednisone, my brain fog protected my psyche ! I'm sure your life has to @marymaryoregon
For me, there doesn't have to be a chemical involvement. If you've been living an everyday life and can get around and take care of yourself and suddenly, overnight, you are challenged at every turn. That is an overwhelming adjustment for anyone. The situation is depressing. Thinking positively and talking to people in remission was huge for me. If they could get better....I would. It didn't take much for me to think of how much worse off I could be.
I'll share....at the time of diagnosis, my husband of 40 years and I were separated, and I was living in an apartment in Maine...happy as could be. Bang! I couldn't shop, hired help, paid to be driven to appointments..physically, mentally I was drained and it was indeed affecting me financially. After 18 months, my husband told me he was buying a home to rent near him. I asked if I could rent it ...and if he would take me to my appointments etc. So, I moved back to Indiana, and he has been tremendous. I kept my Maine therapist, and we have a visit every Monday via Zoom.

To me, getting depressed over the situation was a normal and healthy reaction. My Monday sessions are lifesavers. I 'buried' my old life and have built a new one which does improve all the time. I took a shower standing up last weekend for the first time in three years.
I know it takes a lot of work, and I appreciate so many of the points you made. It sure isn't a weakness...it is just plain real feelings, and dealing with it head-on helps us manage our response to what has been dealt to us.
I think stress is more damaging physically than depression~~what do you think? My apologies for the length of this...but it is therapeutic. Three cheers for Mayo Connect! 💞

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@grammy82

You have a positive and realistic attitude...that makes such a difference. It has been three years of prednisone and Actemra for me...what we get is better management and improvement!!
I wish I could give you a few of my 'love handles', which makes it really simple...and no pinching by an overzealous husband...bless him!!💞

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I have bipolar disorder, which, to the least, keeps me from being far from balanced! I enjoy reading posts from others with autoimmune disorders and depression/anxiety. It helps keep in check! Very helpful advice! Thank you, Pat

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@annewoodmayo

Hi Mary Mary Oregon,
That was a great, informative reply!
I thought the serotonin angle was still current. Thanks for that update!

What do you think of this? I was "gas-lighted" about my autoimmune disease for more than 30 years, by doctors and -worse- by my family. To be fair, though, they knew even less back then. I am sure that the gas-lighting contributed to my depression and anxiety back then. Or, do you think the depression and anxiety were completely the function of my autoimmune disease? They still persist now, post diagnosis and with treatment.

Curious, isn't it?

Hope you have a chance to reply. Thanks! And good health to all who may read this post.

Jump to this post

I think that the human existence is too complex to have simple answers. So, the answer to your question is: yes, all of the above.

Stress, depression, immune dysfunction, physical pain, more stress about whether you are “faking”… it’s like a snowball rolling down a hill- it just gets bigger.

At least that was my experience, and trying to ignore any one component of it lead to all of it feeing much worse overall.

I’m sorry that you had such rough experiences but I’m glad it sounds like you are in a place where you can look back and see that it was bad… and hopefully can be in a less bad (even good) place today and tomorrow.

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@grammy82

It may sound silly, but basic...good doctors who understand both of your issues as well as which medicines can be taken together safely.

About 14 or so years ago, my plate was too heavy for me to carry, I had relationship issues, a son caught up in drugs, took a fair amount of meds for other chronic issues, PLUS my only grandchildren lived in Prague~~ I was put on Cymbalta and it has worked well for me along with a great therapist. I'm 82 now, closer to 83, and three years ago lost sight in one eye and was diagnosed with GCA, and autoimmune disease affecting the cerebral arteries and possibly other ones as well.

At that time, I was started on Prednisone and within a few months, a weekly injection of a biologic was added. I wasn't being at all sarcastic or a smart ...mouth...the best doctors possible are the key. I feel no conflict between those meds plus seizure meds, asthma inhalers, heart meds ...it is a buffet.

Here is the story behind my strong conviction....
As a teenager, I started having seizures. In 1985, after not having a seizure in 11 years, I went to a neurologist who appeared well-educated and asked if he could run some tests and see if my meds could be reduced. The tests looked great and he told me of a new med that came out and he would try me on that.(I won't mention the name because I don't want to give the drug a bad rap). With every reaction I had he gave me more and more and more. It turned out I was having a reaction to that 'new' med. One day my pharmacist asked me when my last seizure was and then suggested I go to Mayo Clinic because he had no other patient on 24 of these per day....and by now, I was getting confused and shaky, very shaky. I delayed and when I went in for my refill the next month, he asked if I had called Mayo. He told me he could lose his job but I'd been a regular customer for years. I called The Mayo Clinic in Rochester and made an appointment. I had serious anemia, a drug-induced Lupus, and my IQ was in the 70s. I'd worked as a junior exec in a Fortune 500 company for four years and ultimately retired from there.

The Mayo Clinic saved my life and gave me a six-month regimen to reduce to five pills a day, a maintenance dosage. Long story, I know...but to make my point...Nothing is as important as a really competent doctor, and if he/she isn't, switch or get a second opinion. If you can, go to Mayo. My best...stay with the support group. The uncertainty of autoimmune is really helped by support. You are never alone, ever. 💞

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No true story is too long - so many of us will see ourselves in your words, me especially, having my own struggle with getting correctly sorted, and then adverse reactions to most "chemicals" , one prescribed by someone who looked at the "book" - not me, and i ended up in the ER by a $2K uber (ambulance)one-way ride, and never hearing from him again (his office number has been blocked). thank you for adding your experience and determination to ours.

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@flamingal

No true story is too long - so many of us will see ourselves in your words, me especially, having my own struggle with getting correctly sorted, and then adverse reactions to most "chemicals" , one prescribed by someone who looked at the "book" - not me, and i ended up in the ER by a $2K uber (ambulance)one-way ride, and never hearing from him again (his office number has been blocked). thank you for adding your experience and determination to ours.

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@flamingal Thanks! That is definitely the most expensive Uber ride ever!!
You have a great deal of courage and we persevere, but it is true we draw strength from each other. I'll be totally honest...I'd have been lost without 'people' support as well as somewhere to ask questions. Thank you for helping me...it is a big boat we are in.💞💞

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