Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Revelation!

Yesterday I had a really bad emotional episode. It was caused by a confluence of events - working late, ever increasing pain levels, fatigue, low blood sugar. By the time we were home I was in a self-loathing loop that threatened to turn outward to Brian. At 10pm I finally just went to bed to avoid saying or doing anything that would be hurtful to him.

Folks this was a blackness that I have lived with most of my life and as I sat with it last night, I realized I have not experienced it since Remicade. Which got me to thinking. Is there a connection between TNF-a and our emotions? Was it more than the cessation of pain and the increase in energy that had me feeling better emotionally? Was the cessation of the movement of TNF-a through my body the key?

So, this morning I googled and here is what I found.

Positive Health
Centre pour Recherche Scientifique
LEF.org

Excerpt from LEF.org article (the bold is mine):

Beneath the surface of sadness and hopelessness blazes an inferno of metabolic phenomena. Increased levels of inflammatory proteins, such as interleukin one-beta (IL-1b) and tumor necrosis factor-alpha (TNF-a), circulate in the blood, suggesting that low-grade, body-wide inflammation accompanies depression. IL-1b and TNF-a levels correlate with the severity of depression, with higher levels of inflammatory proteins linked to more serious depression.4 C-reactive protein is another inflammatory protein found at higher levels in depressed persons.

There's an article at Oxford Journals that looked like it might be interesting, but I couldn't access the full text.

Anyway, it would appear that TNF-a plays a key role in emotions for some of us. Inhibiting TNF-a appears, in my case anyway, to have alleviated a lifetime of depression and blackness.

Has anyone else noticed anything like this in themselves?

Many hugs,

Hey! That's part of my thesis. Super interesting stuff. It's been established that pain and depression are linked (duuhhh! It boggles my mind how long it takes researchers to confirm/validate the obvious sometimes), but it's kind of a chicken and egg kinda deal. So far it's correlational, not causative. I wonder how it works with TNF - does depression increase TNF, or does TNF increase depression?
Nonetheless, it still sucks you're feeling out of it, but good to know what helps. I'm not really sure if enbrel works that way for me - all I know is if I can walk and sleep, I'm a very happy girl, and that is (was) directly linked to enbrel....so who knows?
Hang in there!

Me too ! If I can walk and sleep, I feel like a millionare !

But I only realized this after I went through the darkness of not being able to walk and sleep !!

Olivia

Well, see that's the thing Megan. The blackness and self-hatred lifted with the onset of Remicade. That I had an episode of it when I had to postpone the Remicade is telling, to my mind.

Granted, I had alot going on: low blood sugar, stress at work, my period, fatigue, pain. The thing is that I've had that confluence several times during the past 18 months, but not once have I gone into the loop I went into the other night - a loop that I have lived with my entire life (and I mean including my formative years - I never felt quite good enough and while I appeared happy go-lucky, inside I was often not so carefree). I spent a great deal of time and energy over the past 20 years trying to come to grips with it, understand it, train myself out of it. But never have I felt the lightness of spirit that I have felt since starting Remicade - even when things were so stressful with Brian last year.

I have a feeling that TNF-a plays a huge role in this (for me anyway). Blocking its free movement throughout my system also seems to have blocked the darkness I have lived with my entire life. And since the studies I found showed an increased level of TNF-A ativity and accompanying body-wide inflammation in people who are depressed, I have to wonder if that would affect the brain too. Beyond the physical pain, I mean. If that's the case, I wonder how many people could live better, happier, freer lives if there were a way to test the levels of TNF-a in their systems or some such thing.

Many hugs,

Hey Kat. Been meaning to write. You wouldn't believe everything that's happening to us over here. Loads of changes, mostly good changes, but stressful at the same time. We're doing alright, but there just hasn't been a lot of time for staying in touch with those that live so far away.

I'm really sorry that your infusion has been delayed. I was very worried that mine would be today. I've really struggled for the second half of this first 8 week period. First two weeks marvellous. Second two not so bad. Last 4, my god it hurt. We're hopeful that I'll still have a cummulative effect, but my specialist nurse is already wondering if I might benefit from a more regular therapy like Enbrel. (Incidentally, I had a reassessment on Tuesday too, and despite being in a lot of pain nearly ALL of my objective indicators like flexibility were much improved - and flexibility is really not something I needed to work on).

Anyhow, I'll get to the point shall I?

Last night was my last night before the next infusion, and I was sad sad sad all night. Loz kept asking me what was wrong, and all I could answer was "I don't know". Same caveats as you, there's a lot going on, and obviously there has been loads of good reasons to be sad this year, but I wasn't even thinking about any of those things, I was just MAJORLY bummed. I've started (as of yesterday) keeping a diary of foods and symptoms (AS and otherwise, remicade hasn't been good to me with the side effects), so I'll add mood. I'm with you. I've had a lifetime of struggling with blues and clouds overhead. If it's been the TNFa and not the seretonin I'll be much happier for knowing.

Big love and hugs to you and Brian,
Jeanna

PS - Megan your thesis sounds WAY cool. Do send an abstract or two my way when you have the time. I'm intrigued!

Interesting you should mention seratonin. I was put on Celexa, a seratonin uptake inhibitor (?? I think that's right) a few years ago. It worked - after making me suicidal for the first five days. Not pretty.

Anywho, I haven't taken it since starting on Remicade. Didn't need it. I always put it down to the alleviation of my AS symptoms. Now, I'm rethinking.

It's funny, I spent my whole life thinking I wasn't good enough. Feeling as if I wasn't fully a part of things, and wanting desperately to be accepted for who I was. As I got older, I realized that if I couldn't accept me, how could anyone else. Everyone else was worthy of love ... I wasn't. That's what it boiled down to. I sought answers everywhere. Including years of therapy.

I am a spiritual explorer and throughout the 90s, I learned about taking responsiblity for your emotional reactions. So, I began getting down on myself for not taking responsiblity for being down on myself. You see the vicious circle there. And the facade I had always worn of being carefree became harder to keep in place. All I wanted to was to loved and accepted for who I was, and I became heartily weary of constantly trying to be better for the people around me and never succeeding. Black times. I have entire periods of my life from childhood through the last few years that are enshrouded in black. And I have very little memory of those times.

Then I was diagnosed with AS and I thought it all made sense. In a way, it was a good thing because now I had something to focus on other than how inadequate I was. But the horrible tempers, the falling apart over nothing, the 'hates' that overwhelmed me at times (usually when I was PMSing, but at other times too I would be caught in a hate cycle over one specific person - and that person varied, or didn't depending on what was going on - during which I would feel horrible horrible things), and the constant self-loathing. When people in my life revealed that I was their favourite, it blew me away. I had no idea.

I didn't even realize that I had stopped feeling that way until the other night when I felt that way again. I don't want to feel that way ever again and if a TNF inhibitor is the key to this as well as my AS, I'm going to fight doubly hard to stay on them.

Anyway, my 5pm 'emergency' just landed on my desk. 3 days in a row now. I am not impressed.

Love and hugs,

I can't say for sure what made the biggest difference for me - finding a treatment that even remotely made a difference or just getting some kind of a dx after feeling for years like I was somehow to blame for all of my physical problems.

I didn't realize how much my personality had changed over the years, until people closest to me starting bringing it to my attention. Not only was I depressed, but basically, I just wasn't nice.

Then I didn't realize once again that the "change-back" was occurring until I ran into some friends I hadn't seen in quite a while & they said that "not only did I look much better, I seemed more like my old self". I was a bit stunned when he said that, so I kind of laughed & told him to "let me know when I get all the way back to my old self" because "I'm not sure I would still recognize me". You forget what a life without pain is like.

Often we don't even realize ourselves that coping with a very painful, chronic disease doesn't just affect our bodies, but affects our minds as well. Doctors tend to overlook that alot as well.

Fortunately, that is one thing my rheumatologist has always taken into consideration is my emotional state.

I don't know how anyone's mental health couldn't be affected when you have constant, unrelenting pain, that often for many of us, goes on for years without proper treatment.

So begins the vicious cycle...pain causes depression, depression increases pain. The mind as well as the body needs treatment to cope & heal.

not as depressed or anxiety i sure have noticed a difference im becomming more my usual self again wity and obnoxious and always joking and giving everyone a hard time. im loving it. and now that i am off of all my meds i feel even better except for the fibro which is making me exhausted just to walk which is normal for this desease and the pain which aint like AS pain but its still there all the same. but definitly feeling less depressed since i started remicade.......oak

Really interesing thread Kat. Lots of what you've said is a similar experience to my own, lifetime of black cloud, blues, trying to find my place, feeling lazy and boring when as a student all my friends were out clubbing and i just didn't feel like it or have the energy...all made a sense a few years later when i was diagnosed.

I'm so pleased the remicade has lifted it for you, i'm still waiting for the enbrel to do the same, desperately trying to sort out a dosage that doesn't wipe me out so badly....here's hoping!

Hi Guys,
This is really interesting, I can honestly say I felt a great improovemnt in my mood when on the Enbrel as well. I really felt great, but no sleep and my Blood sugar went up. I will be trying Remicade in the near future . I also noticed after d/c Enbrel I stayed in a good remission for about four months but I also didn't sleep for almost that long.

I am not going to rush into anything new until I find out what I will have to have done to deal with the renal arteries obstruction.


Janet