All Muddled - not sure how to feel?

[Sparky]

Hello,

I've been a member for ages but haven't posted in a very long time.

In short form, I've had CD for 8 years, never in remission, and went horribly downhill last year. I lost about a stone, no energy - you all know the drill. That was on top of all the weight I'd already lost, so looking pretty fragile/skeletal.

I saw my (lovely) consultant in November, ended up booked in for a colonoscopy 1st December (yay! what a tip-top way to look forward to Christmas). Colonoscopy was just as horrid as I remembered (hate the cannula in hand thingy, so stay awake), but mostly horrid because of what I saw. I would never have believed that something so inflamed, and horrible looking could be inside me.

Anyway - I went in for a chat with consultant 6th December, and ended up starting Humira there and then. Not a total surprise - we'd talked it over, and he'd done whatever was necessary between colonoscopy and me coming in to get the NICE paperwork out the way. We'd had all the conversations about the drug, side effects, etc beforehand.

So...had the first loading dose. Fine, felt slightly better maybe? Had the second loading dose - definitely felt better. No joint pain (Have severe RA too), more energy...rock on. And...I'm gaining weight. For the first time in a year (scary sort of, but good really, may start another thread)

Then we get to maintenance dose once a fortnight. Feel goodish for the first week, and then progressively rubbish in the second week.

Is that usual? I'm back to see lovely consultant on the 31st, and it feels at the moment like it wears off after a week?

I'm all conflicted - after the loading doses, I was soooooo high. All that fatigue and lethargy had gone, and now that's back,albeit not as bad. I'm not sure what I have a right to expect, or what is normal?

Right - I've rambled enough. I thought for about 4 days at the end of December that I had my life back, and then it kind of went awry.

All experiences and thoughts would be welcome!

 

[mickey]

While you can be put on meds, you need to make other changes in your lifestyle as well (i.e., what you eat and drink) to make a difference. Take it one day at a time. Good luck!

 

[Miss Underestimated]

I think I'd tell the doctor. I'm taking the loading doses now - no big difference to me.

 

[PsychoJane]

I had that feeling at the beginning where I had the impression it was not as effective during the second week. I think it was like that for maybe a month or two. I also had mild joint/muscles pains (which was not normal for me) during the second week. It faded over time. You will see with your consultant, it is not impossible that your body has the capacity to built antibodies to humira which could reduce the overall efficacy. It's really early for that but I guess we never know, your doctor could tell better than I
Good luck with all that!

 

[suschex]

I know that some people have to take injections every 10 days or even weekly to keep in remission and feeling well between injections....lot's of people on this forum have mentioned having to do this and having found great success this way. In fact, during clinical trials, there were groups that went to weekly shots...you can look it up if you need to before seeing your doctor!

Hang in there!

 

[handle]

Same thing happened to me! I really felt alive for the first time in a long time after the first loading dose, but that wore of quickly and then I felt nothing after that...
However, after continuing fortnightly for several months and thinking it was all a waste of time, low and behold I started to feel better! I was also taking 6mp at a low dose, and I recommend that. Can't be sure it wasn't the 6mp kicking in that also helped... (and by the way there were no dietary changes - people can be so annoying about that.)
Anyway, definitely hang in there. I think the longer you've been ill and the worse off you are, the longer it might take for a sustained response.

 

[chrisnsteph1022]

You may need to add Imuran or 6mp to make it more effective.