Meds stopped working. Feeling like I'm losing my mind

General Support
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Aaaaaarrghh! It feels like I only come to this forum to whine!

I was on Enbrel for a year and looking at my posts from 12 months ago I was on Cloud 9. But my metabolism being a crazy mofo, I develop resistance to anything that does or doesn't belong in my body. My immune system doesn't like my skin, my joints, my bones and basically nullify anything that I put in my body to dull or fight the attacks.

I've been off meds for 5 weeks now and I don't feel that bad. VERY tired and moody and achy but the physical pain is bearable.

Rheumy decided on Cimzia because we want to try for this "last chance baby" (I'm 40yo and was on metho for past 2-3 years) and she feels comfortable with this medication before I get a positive. I have a bad cold and they don't want to start Cimzia before it clears up but I'm sooooooo tired.

I had quite a lot of days off with the holidays and I guess that sleeping for 10-12hrs/day helped a lot but it can't be my life. I cannot sleep half of my remaining years away.

Which bring me to my main complaint. I have several co-worker that are or have been on leave for long periods of time (like 4-5 months, 10 months or over 18 months in one case) for things such as "unbearable grief", "exhaustion", "confusion" and the likes.

Last year I was off work for 4 months because I couldn't walk, it was before Enbrel which worked as a miracle drug for me at first. I got back to work with energy to spare and got a new position.

Now that I'm not feeling my best again, people are glaring at me and talking behind my back. Complaining that I miss a lot even if I make up for days missed with overtime on days I feel good. The worst is that they do not care about my health, they look at me like it's my fault the meds are not working and that I should be grateful that I can still stand on my legs and work. Somehow, someone who cannot cope with the death of her dog can get a 3 monthsmpaid leave but I, who can barely get up in the morning because of a chronic diagnosed disease cannot. Talk about picking the short straw!

I'll talk to my rheumy soon to see what my options are but I cannot continue on working full time with 2h commute each day. It's robning me of my life. I can't believe that life is just work(10hrs), sleep (10hrs), eat, shit and take a shower when you have enough energy.

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I was glued to the page reading this. I haven't had all these experiences, I have had some of them, and I can relate to all of them even though I'm in a different stage of my life to you.

The disease is odd, to put it mildly. And when it goes haywire it messes with the mind. Work colleagues quite often seem to mess with the mind too.

I haven't got any suggestions other than stay hopeful. Even our crazy bodies so often calm down when meds work and the chances are that you will not reject / resist all drugs, though I can easily imagine you feel that way at the moment.

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Wow ShyWarrior! This is exactly why I shouldn't complain! You have every reason to be upset--with PsA and with your job and the people you work with, AND that Enbrel stopped working for you! How annoying!

I hope your rheumy gets you started on a different biologic. I'm not familiar with Cimzia - is it a biologic (I guess I could look that up) - but I hope up you get over your cold soon so you can go ahead with it!

Hang in there!! Let us know how it goes!

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Thanks for the kind words. Wow! I never thought I would be so low again.

Sybil, you are so right when you say that the disease mess with our minds. I never felt this paranoid before. Now it just seem that I'm surrounded with hostile people. But one of my new colleague I suspect was the typical high school bully is on my back. She has already gotten 2 person to quit. Quitting would just give valudation so I suck it up.

Grandma, Cimzia is a biologic. Same family as Simponi I think. I'm starting next friday with a double dose!! I'll keep you posted!!!

Wish you all the best, it's not easy living with PsA. ♡

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ShyWarrior, these articles (and other links from them) have some useful information about employment/employers/colleagues etc so I wanted to post them for you to take a look at in case anything is helpful to you:

What is your boss allowed to ask when you call in sick (from usnews.com)

The ADA: Your Employment Rights as an Individual With a Disability

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Thanks for the posts Jules! Very helpful.
Shywarrior, I have been in your shoes! My job is very demanding and at times I feel like I am my hardest skeptic but am surrounded by “alpha” coworkers as well. My bio is doing great things at least for about a week after injection then I struggle again during week two. Currently on humira and hoping my rheumy will approve weekly or 10 day shot intervals on my next visit. Balance is very hard but I have managed to be successful for the most part and pulled up in the ranks regardless. My hardest is home balance, like you there is nothing left by the time I get home and weekends are pretty much wasted on recovery. I often feel like I am less of a mom and overdue more often than not compensating for it. Part of me worries that this is as good as it gets and if I don’t make the most of it I will regret it later. That makes finding a good balance even harder, but when I slow down and think day to day I can usually get by better than overwhelming myself by planning everything out for a week. I avoid making plans or promises that way I don’t disappoint myself or others as often, this helps with guilt alot. Good luck and keep posting it helps and we are all here for you floating around in the same boat!

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Shywarrior, how are things going? Have you been able to start the Cimzia yet? I used it for a year and half and it has been my best drug by far, but after I got the flu in late 2014 it jacked my body up and things quickly went south and I had a major flare. I have spent the better part of year trying to get my groove back and have been diagnosed with Crohn's disease as well. Remicade is finally working for me now that they have increased the dose twice and moved me from every 6 weeks to every 4 weeks. I can sympathize with the BS about coworkers. I actually had one lady tell me that she was discussing me with her husband and he didn't understand how one person could possibly have so many things wrong with them. I was stunned at her candor and the fact that I'm a topic of conversation at her house when I GET MY WORK DONE regardless of how I feel. Sadly, there are a lot of A holes out there, but you are not alone despite how it may feel. Hang in there.