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I need a good talking to...
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OyWithThePoodlesAlready posted:
Hey guys, I need a bit of a talking to... I'm seriously tempted by the idea of no meds.


What makes me think this is a good idea? Nothing. Nothing logical at least. My problem is I've always been a tough guy, and the idea of the meds just drives me nuts. Especially when I feel good. I'm coming off 10.5 months of prednisone bc I've resisted other meds up until now... I'm suppose to get the PPD done once I'm off prednisone so I can do remicade. And my head says this is the way to go, but I added up the time I'd have to take off of work, and I could possibly need more time than I even earn in a year. So, basically, no more vacations for me (as well as no buffer for getting sick). So then I get to thinking, should I really go on a cruise (where we always go on vacation) if I'm on remicade? and then I get mad about being sick (esp since I don't feel sick right now - just tired) and mad that I can't do triathlons, or eat vegetables, or bike places. and then my stubbornness kicks in and I want to say screw it - I'm not sick - I can power through this. The only thing that even pulls me out of that is knowing I have a narrowing, and being pretty sure that I've gotten small obstructions in the past - the last one being in November when my #s were almost 0 - leading me to think the narrowing is probably scar tissue and I could very easily end up with a serious obstruction. that thought brings me back to reality of needing to take this seriously, until I think about not being able to go on vacation, and I end up mad and being tempted by denial all over again...


So, that's my crazy.
Anyone have any thoughts on jumping into the meds? I read about veins giving out, and feeling like you have the flu, and c-diff and its seriously tempting to think I'd be better off waiting till I'm sick again and absolutely have to take the drugs...


also, if you have any tips on dealing with the emotional roller coaster ... I'm sure the prednisone taper is not helping in the least...


I hope everyone is feeling better today than yesterday
~Ali
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HannahLeigh89 responded:
It's late and I type loudly (the boyfriend's trying to sleep) so I'm not going to say much right now except that even with being on Remicade, you should be able to go on a cruise if you want to. I was on it for several years, and even though there's a risk of picking up more colds and little things like that, I would not let it stand in your way of going on vacation.
 
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OyWithThePoodlesAlready replied to HannahLeigh89's response:
I use to work with a girl who would call into conference calls and type like a tap dancer! I never knew someone could type so loud

anyway, my concern/fear is I feel healthy now, so how do I even know if its doing anything, he wants to do it as a preventative, but I'm opening myself up to all sorts of side effects and it might not even be doing anything? I think I could really resent it. If there was something I could point to saying "its getting me this" but the only thing I have going on right now is being tired and my belly is a tiny bit puffy. I have a mass, but I always have a mass...

this may all be a moot point, I may get off the prednisone and feel like crap, and I agree, long term prednisone is not the answer. But I'm kinda tempted to avoid meds until I feel crappy again. The dr says its better to try it when I'm not feeling crappy, but then how do i know its doing anything? I think I may need to be able to measure success to be ok with the craziness that the drugs bring (nothing motivates me more than a goal)

I'm glad to hear you weren't concerned with germs, I have historically had an impenetrable immune system. So the concern with the cruise is just that I won't have any vacation days left to even take a vacation.... still sucky

thanks for the thoughts, I have a few more weeks till I'm off the prednisone to think it all out, I just hope I can figure it out by then...
 
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OyWithThePoodlesAlready replied to OyWithThePoodlesAlready's response:
I know I don't want any more damage but what I'm thinking now is that bc my crp goes through the roof, that as long as my #s stay low its a good bet that I don't have inflammation and I could get away without meds

(even on 4 months of 30mg of prednisone my crp was 6.8 and I was so swollen I was wearing maternity pants. My high was 30.2 last year)

anyone have any thoughts on if this is a safe assumption? I know the medical wisdom says to be on meds always, but my #s are sooo low (.9 on the crp) and it seems like there are so many downsides to remicade (using up all my PTO, feeling like crap) esp if I have no way to know that its actually working (since I'm in remission)...

anyway, that's where my inner dialog stands today... thanks for listening
 
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JavaMamma27 replied to OyWithThePoodlesAlready's response:
can you do Humira? The shots are EASY. I felt crummy after the fisrt 2 doses for a day. I timed my shot for friday evening so that I felt crummy over the weekend. I went with Humira b.c of the reservations you have with Remicade.
 
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OyWithThePoodlesAlready replied to JavaMamma27's response:
I've thought about it, it seems like the perfect solution except I'm trying to get pregnant and remicade has a much long track record. Plus they like to not give you a dose in your 3rd bc the baby gets more than the mom, so if I went remicade I could skip just 1 dose since its every 2-3 months, whereas the humira I'd be missing 6 doses or so

that's been my thought up until now, although, now that I think about it, I guess compared to not taking anything at all missing 6 doses isn't so bad....

hmm, you've given me something to think about - thanks
 
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sheba_q replied to OyWithThePoodlesAlready's response:
I have ulcerative colitis and take a 5-asa so I'm in a different situation that you. But...

I think the idea of not taking meds really isn't good. I can see it for the moment if you're trying to get pregnant. After that though, you have to get your mind around the fact that you have a serious medical condition, and waiting for the bottom to drop out before you treat it is not exactly the sanest thing to do.

I've had to take meds every single day for the last 18 years. It's not something that I really want to do, but when I think about what would happen if I didn't, it's the lesser of two evils. By not taking something as a preventative, you're bound to have more problems later on - "an ounce of prevention is worth a pound of cure."
 
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OyWithThePoodlesAlready replied to sheba_q's response:
Yeah, I think that's pretty much what my dr wants to say if he weren't so intent on biting his tongue.

My problem is I know it in my head, but in my heart I'm a tough guy to the core. Not because I think I need to be, but that's just how I'm wired. To compound it, at one apt the Dr thought I was freaking out by the dx and told me things like its mild to moderate, so now when I try to tell myself that this is serious, that inner voice says "mild" over and over. The thing that ultimately motivates me is a goal, so I'm hoping I can convince

I am going to consider the humira, I'd decided against it because the remicade seemed better in my head, and then freaked out when I went to implement the decision (I do that with EVERYTHING).

I think I could be ok with humira, I just can't seem to be ok with Remicade and am afraid I'd just resent it and have all sorts of emotions around it.

I do appreciate the input, I'll see my gp in 2 weeks or so to get a ppd done and I hope to have a plan by then so I can talk it out with him. He's not a GI, but he's good to talk to and my GI just wants me to decide on my own
 
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sheba_q replied to OyWithThePoodlesAlready's response:
If what I remember is true, they don't want you going on and off Remicade or Humira - something about how it may not work as well if you go back on it after a break.

I can't remember your background, but did you try the 5-asa meds? They've been shown to be safe during pregnancy. Maybe this page will help you figure out what to do next.

http://www.ccfa.org/about/news/pregnancy
 
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OyWithThePoodlesAlready replied to sheba_q's response:
yeah, I've heard they can loose efficacy too... one of the reasons I made the head decision to go with remicade (my heart just refuses to follow)... My GI is a big "top down approach" guy, so he gave me the option of 6mp or a biologic and the biologic is much better than 6mp with pregnancy... (at least according to this article (nih summary )- full article )

I'm a bit confused my the "mild to moderate" but having a narrowing - apparently it was narrowed enough he couldn't get the colonoscopy camera into the ileum, so I don't really have a good grasp on how bad it is.

it does look like the 5-asa meds are one of the better options, he's just never suggested anything other than prednisone, 6mp and biologics, and he prefers biologics. I think I have a mild allergy to sulfa, I'm not sure if that plays into him not mentioning that group, but I suspect that its more that he subscribes to the top down approach.

I would be really sad if I couldn't use humira after a while and had to go to remicade long term. but I'm also not pregnant yet, and I'm getting really close to ama, so I'm not expecting it to happen right away (it would be wonderful if I was wrong, but good to set reasonable expectations...)

I've been mulling this since last fall, I have no idea how I'm going to make a decision... hopefully I will be able to this time, I think my GI is getting really sick of me and my feet dragging!

thanks again for the input
~Ali
 
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sheba_q replied to OyWithThePoodlesAlready's response:
Well we do have a "chronic" condition - so sometimes it can be mild while at other times it can be wild (not in a good way of course). Either way it is considered a serious medical condition.

I wonder about doctors who want to start with the strongest (and possibly harshest) meds and then consider other options. I'm used to it being the other way around.

Copied from ccfa.org:

Researchers have also developed newer oral drugs that deliver 5-ASA without sulfapyridine. These include:
  • mesalamine (Asacol®, Pentasa®, Apriso"122, Lialda® );
  • olsalazine (Dipentum®); and
  • balsalazide (Colazal"122).
Up to 90 percent of people who cannot tolerate sulfasalazine are able to take other 5-ASAs.


So I really think they're worth a try (and not just because I take one). If nothing else you won't have to worry about the baby if you do become pregnant while taking it.
 
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arbob5 replied to sheba_q's response:
I was on sulfasalazine because of my arthritis, which I was dx with before I was dx with UC. So, after two years on it, once I was dx with UC, my GI doctor took me off of it because it could severely affect my kidneys. Now I can certainly vouch for Lialda. Of course, it's not the only med I take for my UC, ie, prednisone, Lomotil, and probiotics, but my turnaround began when I started to take Lialda. It is very expensive, but my GI doctor manages to get me some samples, and that, along with my pharmaceutical allowable, I can manage it. I started on 4 Lialda a day, now down to 2. I will probably stay at this dose because all is well here. Thank God.
 
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OyWithThePoodlesAlready replied to sheba_q's response:
I think the "top down" is fairly new (biologics certainly are).
This is the article that I've gotten most of my understanding about the 2 approaches from http://www.medscape.org/viewarticle/560005_2

My understanding is basically that there has been some evidence of better long term outcomes and that it might heal the mucosa (I think the biologics are the only ones they think do this)

Also, I understand that biologics are the next step after steriods fail- and steriods did fail for me - I was on 40 for several months and he took me down to 30 just for safety but I was still feeling crappy until I did a liquid diet, and that took my #s to the good place they are now.

That is another reason I'm tempted to avoid meds - steriods failed and the natural diet change and supplements seemed to work for me. Not that I think it will cure me or anything but I got 3 years of no symptoms when I went gluten free and then it came back. In general, drugs don't work all that well for me and this really did....

and that is my quandary
 
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Miserable_SOB replied to OyWithThePoodlesAlready's response:
Poodles, I believe you're on the right track, even if it winds up failing you. Only because every drug I used when I battled Ulcerative Colitis failed me. Even injecting Cortisone was worthless in my case. I only wish I knew about some of the diet alternatives back in the 80's that you're using now. All the dieting I did back then, which was suggested by my doctor failed me too. About the only thing that brought it under control was going to the hospital for a intravenous feeding. And that wasn't done on a out patient basis.
 
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OyWithThePoodlesAlready replied to Miserable_SOB's response:
Thanks, its certainly not an easy decision....


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