Remicade, Humira, and supplements

Hi I'm new to the forums and my concerns are about vitamins and supplements while getting Remicade infusions. I was diagnosed with UC back in 2000, suffered a lot, and eventually had the j-pouch surgeries. It had changed my life complete 180, but I basically now, about 6 years later, feel like I'm back to where I started (except now I guess its called Chrohns/IBD) with increased flares and extreme joint pains/swelling. about a year ago I started the Remicade which was a lifesaver at least as regards to my joints, but it makes me extremely weak. Last winter I was sick ALL the time and even developed mild asthma! The Remicade really is my last resort so I'm looking for ways to boost my immune system and to talk to people with any Remicade experience. I've tried taking so many different vitamins already and most don't help and hurt my stomach instead. I'm also in the process of tapering off Prednisone so I've been so weak lately that I've barely been able to function and have been getting extreme panic attacks.

And by the way, I had decided to give the Humira a shot...until I actually recieved my first injection. It was the most painful thing I had ever experienced. I really don't mean to scare anybody with this and I'm sorry if I do, but it was just so horrible I just need to know if anybody else experienced this and if its worth that torture once a weak! And on TOP of everything I had what seemed to be a minor allergic reaction cause when I came home I felt pins and needles in my throat defiantly in a distinct way I had never felt before!

I am now sticking with the Remicade, but I'd still like to know more about the Humira incase I have to switch in the future. Any replys would be greatly appreciated..thanks!

Jessi

Jessi, 21

Autoimmune dissorders: Chrohns/UC/IBD; Arthritis; Anxiety Disorder; Asthma; Seasonal Allergies, etc.

Currently taking: Prednisone, Remicade (twice a weak), Cymbalta, Ativan, Tylenol 3, Famotadine, QVAR (inhaler), and Temezepem.

Hi Jessi,

I am afraid I do not have any answers regards the Remicade and Humira but have got UC and am also on benzodiazepines such as diazepam and noticed you are on both Ativan and temazepam. I know the horror of extreme panic attacks and have been cutting my benzos over a few years but they do not help in the longterm and can make things so much worse. My brother has just successfully quit these drugs and now tells me that problems still hapen but that he does not get riled so quickly or does he despair and have fear like before and handles things so much better. I realize that this may be of no help but thought that maybe you may find something to help you at least understand how anxiety can rule your life, it has runined mine for sure.

I am so sorry that you has thw J pouch and yet still have disease as it is so uncommon to be diagnosed with UC and then later be diagnosed with Crohn's. It all sounds very odd to me and I would ask for another opinion, I know that one can have pouchitis but, as I understand it, it is a form of the UC again and not Crohn's but I am not expert and so cannot ask you to follow my advice.

Do look into the benzos please and look for the Ashton manual for a taper plan, it is available on the net and will give you some idea of why you are feeling so tired as well, really.

God bles you.

Julian

I can help out with the Humira pain. I had previously been on Remicade, until I had an allergic reaction on my third dose. So...Humira. Yes, it hurts me too...a lot. But having no other options my doctor and I have found a way to work with/around it. He prescribed some Lidocaine gel for me, which numbs the immediate area. So what I do is put the gel on whatever spot on my leg we're going to be using (DEFINITELY not in the arm, I've heard it hurts even worse), about an inch in diameter, then I put some plastic wrap over it and put a heating pad on it set to the lowest setting. The heat helps open up the blood vessles to absorb the gel. I hang out about 10 or 15 minutes like that, I put another round of gel on a few minutes before the injection. Also, keep the Humira in your hand once you take it out of the fridge, the person above is correct, the colder it is the more it hurts, so warm it up in your hand while you're waiting for the gel to take effect. I've found it also helps when the person injecting it squeezes your leg reallly really hard, it helps take away from the serious stinging of the Humira. I usually can't touch the area for a good 15 minutes, but once I can I usually put some ice on the area to help numb it some more. That's my ritutal, like I said, I'm down to Humira or nothing, and nothing just isn't working for me.

Oh, and as far as the vitamins hurting your stomach. That's probably because you were in a multi-vitamin multi-mineral (which most vitamins on the shelf are), which has iron in it. Killer on my stomach. I'm also taking the gummies (flinstones right now ), which are straight up multi-vitamins, no minerals involved.

Has your doc been doing regular blood tests? Is there anything out of the ordinary, high or low? It sounds like you could be anemic, with as tired as you're feeling. And if the Crohn's is active you're probably not absorbing as much as you need to (if much at all). Check on your red blood cells, and possibly on your iron (that's a separate blood test - Ferritin). If your iron is really low and you can't tolerate it by mouth (which sounds likely), iron injections are an option, which I have to have generally once a year - I just don't absorb enough to counteract everything involved with being a girl...

Good luck, let us know how your next injection goes.

wow your story is very similar to mine..I was starting to think I was alone out there. You know what I still don't get (and don't think the docs really get either) is what EXACTLY I actually have. Its always something different when I have a flare most of the time they don't really specify-they say: Colitis/ (even though I don't have a colon)/IBD/Chrons/Auto Immune Disorder. I mean, does that make sense?? I don't know if its REALLY ALL Chrons, and although they removed pretty much my entire colon except the very last tiny piece thats connected to the rectum, most of the time its that tiny area that still gets inflamed and causes this huge ordeal...but..thats not really entirely Colitis since its just that one little part. See how confusing it gets? And then there is the whole IBD theory which I personally believe is just a general title. When I research Chrons Disease though, it pretty much matches all my symptoms although I don't have ulcers on my small intestine. What actually qualifies as "signs" or symptoms that tell me or diagnose me with Crohns??
As far as blood tests - I'm pretty much being tested like every 2 weeks for all sorts of things defiantly anemia and low blood counts/cells amongst them and they've been normal last I reacal although I will double-check on that again on Tuesday. I eat A LOT though - pretty much a lot of everything too! I will ask about the iron too thanks for mentioning that and about mixing multi-vitamins with multi-minerals..does it say on the bottles normally if its a multi-vitamin or mineral? Or do I have to inspect the ingredients in the back (which I normally do anyway although not being any type of expert on it)?
And I apologize about not being clear - I am now starting up Remicade once again. I had my first infusion (in a lower dose than I had last time) 2 weeks ago, and will have my second one on Tuesday. I too had tolerated up to 6 weeks at a time, but remember feeling very sick when we tried moving it to 8. Maybe it will be different this time around..?
thanks for all the support,
Jessi

Don't you sometimes just feel like a guinipig? Like one big FREAK experiment? I do. Its funny really, to be the center of attention like that! I mean I can't even keep count anymore of how many endoscopy's and colonoscopy's (although I don't get colonoscopys anymore cause I don't have a colon) I've had amongst the countless other tests and procedures of course.

Its soooo true about the flares always being different. Its been 8 years that I've been battling these Gastro disorders and although I obviously know/feel things like when I'm actually having a flare and stuff, there is still so much I miss each time or just sometimes don't get. It really does feel like each flare is different - they're always from something different too, any type of stress of course being on the top of the list.

As I mentioned on top, I've had colonoscopys and endoscopys a lot before and they STILL won't give me a clear answer. They've mentioned Chrohns to me queit a few times, but I don't know if it was exactly a diagnosis. The last one I had was last year where they took biopsies and all and its mainly the little tiny piece of colon that I have left, and my rectum that is the main area of my flares. What they see is I believe a small ulcer/s that come and go when it gets badly inflamed. Then I've had pouchitis - which is what I think it was this time (I was hospitalized for uncontrollable diarrhea, pain, and joint swelling 3 weeks ago with NO blood this time - go figure). And I know I've also been diagnosed with Duodenitis as well, but we haven't spoken about that in a while although I have a lot of upper abdominal pain all the time. I'm sorry to sound so confusing..I've confused myself as well!
But I do know that I really like and trust my GI cause she knows my body better than me! Whenever I don't feel good I also just e-mail her and she usually knows right on what my problem is without even seeing me most of the time unless it gets really serious where I have to be hospitalized.

And btw, most bloodwork that I get done show most of my levels of supplements and all pretty normal. I have been anemic a lot before, and occasionally I do get some defficiancies, but all in all I don't have too many problems with that. Yet, I'm still extremely fatiqued and get sick a lot very easily.

Thank you so much for all your advice..you have no idea how much of a help this is to me :)

What does your GI say that you have? I don't think its always about what you have exactly, but whats going on instead. They just know to treat whats happening at the time being. I think they're always thrown off with me because as soon as they say I have one thing and diagnose and treat me for it, something completely diferent comes along that seems like something they could have missed before, so they just stop diagnosing me and just focus and the symptoms and problems that come along. I don't know if that makes sense.....?