First relapse after five years remission... bad. Help!

Hi, all. Long time since I've been on these forums. I was an active moderator and one of the first to be given Remicade, back when it was experimental. It worked wonders for me and I maintained a 5-year remission and stopped visiting the forums as I started to live life again!

After an extended vacation two summers ago, during which I wasn't able to get my medications, I relapsed. As many of you have also experienced, I had built up antibodies and Remicade was no longer an option. After a course of prednisone and intravenous solumedrol to get the symptoms under control, I started on Humira. That was over two months ago, and, while I feel much better, I have had chronic headaches ever since. I understand this can happen in some patients. OTC pain medications do not work and tramadol makes me so nauseous I can't get out of bed, so that's not an option. We are exploring other pain medication and considering switching to Simponi.

What's more, I have been diagnosed with depression and am suffering from the sadness, anxiety, fatigue on top of nausea and headaches. I understand depression occurs in up to 50% of colitis sufferers, and I am pretty unhappy in my job and where I live so it's not a huge surprise. But at this point I can't tell what is causing what - am I having headaches because of Humira or because of depression? Am I depressed because of my situation or because of my condition? Am I nauseous because of the medication or the colitis? I am hesitant to add SSRIs on top of all the other medication I'm taking, especially with all the side effects I'm currently experiencing. I am also debating quitting my job to take time to get to a better place. My BF and I just went on a vacation for Christmas and I spent the majority of the time either sick in bed or so depressed I can't have been fun to be around. I'm tired of feeling tired, achey, sick and crying all the time!

Tips on how to proceed? Has anyone tried Simponi vs. Humira? Experience with depression and colitis together? After being in remission for so long, I know it's possible, but it's such a struggle to get back to that point!

Thanks all for listening. :)

Edit to say that, although I am hesitant to admit it, the only thing that gives me any relief is MMJ. I am 23 years old and never smoked until last year, and am still embarrassed about it, but the effects are remarkable. It relieves my pain and nausea, gives me back my appetite, puts me in a good mood and lets me sleep. I don't use it while I work (which is 40 hours a week) or any time when I'm going to drive, so it is mostly in the evenings when I get home. Still, my BF is very supportive and says that is the only time he sees me able to be "myself" anymore.

Post Edited (Pwnie) : 12/27/2012 5:27:35 PM (GMT-7)

I couldn't advise more than make your diet more strict!
I hope no one here will beat me down, but I can't emphasize enough the importance of a good diet in your recovery!

Are you eating dairy or some kind of industrial foods? If yes, try to cut them down! It will probably help!

Finally someone who thinks like me!
Everyone want to kill me when I say that when I dismissed drugs, I healed (obviously with the help of a good organic diet)!

Pwnie-What are you on the two antibiotics for if I may ask? I would be adding a good probiotic to help replenish the good stuff in your gut.

Pwnie,

It's great that you were in remission for so long.

I am sorry that you're currently in a flare.

Depression and colitis - brings one thing to mind: have you had your vitamin d3 checked recently?

Low vitamin d3 is correlated both in IBD, and in depression.

I agree with IAS, you may want to look into LDN, low dose naltrexone.

You mentioned you believe in healing our bodies naturally... what about probiotics, diet modification, adding certain supplements like slippery elm powder, l-glutamine?

If you are interested,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

holy cow ......

 Azathioprine, Humira, Minocycline, Clindamycin, Celebrex and about to add an antidepressant.

this is a lot for one body I think!! Maybe feeling sick is a side effect of all this stuff together or maybe it's just the antibiotics?

I would some eliminating before adding more medication.

pwnie, have you thought about taking bupropion (wellbutrin)? it's an anti depressant that is also a tnf inhibitor. there are a few threads on the crohn's forum about people getting remission from this drug. my friend with UC has been in remission since taking it. for IBD, the suggested use is 100 mg, 3x daily. you could talk to your GI or psychiatrist about adding it. it would probably be easier to get a prescription from a psychiatrist since GI docs don't like to prescribe things that aren't technically approved for IBD.

Glad they are doing regular blood draws, just ask them to add vitamin d3.

There are studies that show sunny areas like Florida, California, Arizona etc... Have as many vitamin d3 deficient people (in vitamin d3) as northern territories.

If you apply SPF, your body cannot synthesize sunlight to make the vitamin d3.

Let us know what your levels turn out to be.