Keep Pains and Have Smooth Vacation, Or Stop Remi As Planned?

My wife and I are quarreling tonight. She went to her parents and talked about the vacation we have planned (with them for her mom's retirement celebration) for a few months from now and how she is worried about me being sick for it and ruining it if I go off Remicade and get sick before I'm able to start up Humira.

She says vacations are VERY important to her in general, and that she is worried that I'll be too sick to go.

I made the decision to try stopping Remicade with my doctor a couple weeks ago. The doctor advised me to skip the late October infusion, and see over the next 8 weeks if the pains go away (body aches and joint pains that are bad). If they do, I should go on Humira starting at the end of that 8 weeks. That point would be near when we go on vacation.

My GI doesn't think I will flare terribly since I'm in such a good remission. I think the chances are at least 50% that I will flare. But, I'm really sick of waking up every day hardly able to move. I'm sick of being crabby and getting in weird situations because my brain seems to lock up some when I'm hurting bad.

I guess I should have spoken to her before I decided to get off Remicade, but I just assumed my day-to-day health took precedence over vacations.

You guys think I should wait to skip the Remicade dose? If so, I would have to take a dose in a couple weeks, and then in Mid-December. So, the absolute earliest I would have a chance of getting rid of these pains would be after 8 weeks from the December infusion... so really late February or March instead of a few weeks from now.

Thoughts?

Post Edited (Thoreau) : 10/11/2014 9:01:12 AM (GMT-6)

Honestly I would stay on it for the sake of the vacation. I dont know how bad the pain is, but if it were me (knowing how bad flares are) I would fight through the pain. Also remember there is no guarantee that you wont get the same pains with Humira.

I would continue with the plan. The only part that worries me is the actual vacation. Will you be able to keep the same/similar diet? Does traveling stress you out? Will you be able to rest as needed? It's all quite a bit for your body to adjust to, and without Remicade. When I stopped Remi I thought for sure there were gonna be issues, but so far so good! Good luck with the transition, and I hope you have a nice vacation as well!

I think you answered your own question - smooth vacation. Better to deal with the devil you know instead of the unknown.

Alright, thanks folks. Ya, I could've spoken to her about changing meds, but it was something my doctor had changed his opinion on since the last appointment so I just went with it. Hard to be perfect.

I'll let ya know what I go with for sure, but I'm ready to try a break from this Remi.

Wow, if my husband was in pain and wanted to make a change of meds that would take priority over anything else. Period. If I desperately needed a vacation I would go without him or if he came that his participation was his choice at the level he chose.

Every marriage is different but I could not enjoy myself knowing my spouse was in pain. I think it perfectly OK for each person to do what is right for them as long as they are not forcing the other person to participate or delay something that would benefit their health. (OK every spouse has to do things they don't like, such as go to social events they could care less about, but we're talking health here).

If you put your wife's vacation over your health that's a bad precedent. If she puts her own desires above your health that's a bad sign.

Unfortunately I am at the minimum approved dose of Remicade. I've addressed going lower with my doctor but it did not sound like it was an option.

The issue I have to deal with is that my doctor wants me medicine free for 8 weeks to make sure that we know for sure the pains go away from Remi. If I begin Humira right away and still have the pains we won't know if the medicines are causing it or if there is another issue (even though I know in my gut that the meds are causing the pains).

I don't know how she couldn't know how much pain I'm in when I can hardly sit up to kiss her goodbye when she goes to work, but yet she really doesn't seem to understand fully.

Good god, it's depressing hearing you talk about marriage counselling, Thoreau - seems like only last month you got married... :-/

Here's the way I see it. (The correct way, naturally :p) You should've told your wife about the med change: no excuses for that one, you should have just told her. Aside from that what you decide to take to treat your disease is your business. She is not the one who has to live with the pain, you do. So tell her to get over it (paraphrase that sentence a bit). If she has to, she can go on vacation without you - not like she'll be all on her own if her parents are there.

NCOT... Don't act like counseling is a ritual only for the truly defeated in life, lol. It would help most couples I think, and it seems like her and I keep catching on the same few subjects.

If there is one thing this post has left me with it is that everyone sees things differently. For what it is worth, I just went to the mountains with my wife and her parents for ten days in August. Definitely not like I'm discouraging all her interests in travel...

Soy man said it best by saying that there will always be reasons not to do something, but you have to sometimes just do it.

Hey Thoreau - Not gonna comment on the couples' communication issue other than to say that your number one project is to take care of yourself. Otherwise you won't have the strength and good health to be a good partner. More communication is always good. She may not truly understand what long-term suffering you've endured.

As for drugs, I think you know I vote for you to continue on the game plan that you set for yourself, which includes STOPPING remicade. I know what the pains are like - and still can't imagine how you manage to function like this for so long. Also, just curious - they aren't giving you an anti-inflammatory like prednisone? You are just stopping? I'm puzzled that they think the pains would just subside on their own...

Will be very interested to hear your experience of Humira once you get there. I think there's a good chance (since it's also an anti-TNF) that you'll have similar adverse effects. That's why I am not moving on to another anti-TNF,and my doctors don't want me to either. The medical articles we've read said it's nearly uniformly this whole class of drugs causing these pains. Nonetheless, I'm still hopeful for you! Please keep us posted.

Hey Content and Larasmom, thanks for the support.

I've chosen to proceed with my game plan of stopping Remicade. I am almost at eight weeks since my last dose of Remicade, so I will soon start seeing what happens regarding the pains.

Content, I have seen different people on here who have said that the pains just went away after a couple or few weeks after stopping Remicade. Xeeke and Canada Mark are a couple that have said this. I don't believe there were any other anti-inflammatories used... just the act of being Remi free was enough to take away the pains.

Right now my doctor and nurse have said that should I flare up while I am off biologics, they will help me out with something, likely steroids, if I really get to needing them. That has helped keep my wife feeling better with this all.

Re: the communication issue. Ya, we're definitely not perfect. She gets so tired in the evenings that she gets moody or hard to discuss things with (she has something wrong... and is actively looking for answers). I get cranky and stressed, as well as emotional sometimes, whenever I get hurting bad from these pains. Her and I have done better this last week. I spent some time one night going out to get her flowers to surprise her in the morning, and then left her a long note by them (she loves the notes I leave) that let her know better what I feel I need most from her, and us. I also said all the things I can do for her in that note, so it was fair and loving. We've been better this last week after I did that.

Anyways... do I think the Humira will cause the same pains as Remi? This is weird, but I kind of think it won't... and that I will be really happy I'm on it. I know some people have had the same issue with all the anti-tnf's, but there are also many people who feel amazing on Humira after having issues like I'm having with Remicade. So, I am hopeful as well as feeling like it is a good thing what I'm doing.