Is it time for bigger guns for me? Input requested!

[karlyg]

Hi all,
I just got out of the hospital on Wednesday night after staying 5 days for a flare up. While in the hospital, ideas about changing my maintenance meds and "upping the ante" were thrown about, and I am conflicted about what to do at this point. Here's my story, in brief, and I am hoping you might have some advice or input for me. I was diagnosed with Crohn's Disease in 2007, after four years of symptoms and hospitalizations and no clear dx. Since 2007, I have been on Pentasa, Entocort and Nexium for the Crohn's. Every time I try to taper off of Entocort, I end up flaring or having more severe daily symptoms, so I have basically been on 9mg/daily for 4 years at this point. My more serious flare-ups are now coming more frequently. At the beginning, my hospitalizations were a little more than a year apart, but this most recent one came 6 months after the last one, and I feel like my day to day symptoms (especially pain) are not as well controlled either. Also, in the past, my inflammation was always centered in the ileum, but this time there was also inflammation (and pain) in the descending colon. Right now, i am on Prednisone, Flagyl and Cipro to treat the flare, and it seems like it is heading in the right direction (thankfully!), but I am trying to figure out what my next steps will be. One of the GI's in the hospital suggested that I consider Humira or Cimzia, but the GI I see most frequently said he usually reserves these meds for patients who have needed surgery or have persistent fistuals, etc., which, thankfully, I have not had. I am concerned about side effects of these meds, of course, and also concerned that, if I go on them too early when my condition isn't "bad enough," I won't have anything to go up to when it does get to that point. At the same time, I feel like I need to do SOMETHING different, because my current regimen feels like it has reached a plateau as far as its effectiveness.
SO - does anyone have any input or advice for me on these injectable meds and whether or not I should be seriously considering starting on them or avoiding them at all costs? I really appreciate any input you may have, and I thank you in advance.
Enjoy your Sunday!
~Karly :smile:

 

[chrisnsteph1022]

In your situation, I would definitely try a biologic. It's not just for surgical candidates or fistulizing Crohn's. I am neither and I'm on Cimzia.

 

[Crohn's 35]

:bigwave: Hi Karly! I think you are right about the big guns but Humira is mild and not as bad as Remicade for risks. Prednisone is in my opinion the worst drug to be on but short term it is not as bad. Every drug has side effects. It also depends on the quality of life you want in the future. I would give Humira a try, it is a maintenance drug and quick and easy. Glad you joined us. Read some of the Humira threads here, it gives you more of an insight what to expect. :hang:.

 

[slice]

Hi Karly. I've always read/been told that biologics are far more effective the sooner you start them. I started Cimzia a couple of years ago and I've never even been hospitalized, much less had surgery, though I do have arthritis. I have not had any side effects on Cimzia at all and it gave me my quality of life back. I never realized how perpetually exhausted and in pain I was and how long it had been since i had felt not sick until I went on Cimizia. NOw, eventually (8 mos.) it started losing effectiveness so I went up to every two weeks and doubled the dose. Then another year later I started Methotrexate to keep up its effectiveness so it's not been perfect, but to this day I've never had any side effects.

Every body is different so it's all about finding the right combination for you that puts you into remission without causing problems. It can take awhile to figure it out but I have to say your GI saying that he doesn't put people on biologics unless they are basically so bad that there is now permanent damage sounds super outdated and very unusual in 2011. I see you're from Collingswood. I would recommend seeing Dr. Osterman at Penn Presbyterian, or Dr. Lichtenstien at UPENN. Any of the IBD specialists at either hospital would be able to give you some sound advice. Good luck!

 

[Emily]

Sounds like you've tried a lot of meds already and still aren't feeling right. The only one's you didn't seem to mention were 6mp or azathioprine? I tried azathoiprine before Humira, because most docs like to exhaust all pill options before moving to biologics. But if you've already tried one of those, then biologics should be next thing to consider. as Pen said, Humira is very agreeable to many people and hardly any of us have side effects.

 

[slevan]

I have been using humira for almost a year now and have had great success with it. I know how you feel about the potential side effects but the way my dr explained it is that when something says it doubles your chance of some cancers, the original risk was like 1 in 42,000 and now you have a 2 in 42000 chance. Still, not a big risk. And, as mentioned by someone else above, prednisone is, by far, the worst drug you an be on. Good Luck!

 

[karlyg]

Thank you guys for your input. I am still tapering off of the prednisone, and have an appointment to see my GI next week. I will certainly keep you posted!

 

[sunflower]

Well, several years ago that was the thinking. That you should "save" the biologics for when you are "really bad". However, they are finding that the inflammation in your body is "really bad" whether you are having fistulas or other serious complications. Not all people with Crohn's develop fistulas, so it seems odd to reserve medication for that complication only.

Prednisone has serious side effects and being on it for more than a year is a serious concern!! Discuss this with your doctor and if he is still not open to treating you more aggressively, you have the right to ask for another opinion or to see another doctor. It is YOUR body and you are in charge!

 

[sunras]

Hi! I hope your docior's appt went well. I started Humira in May because even though I don't seem "really sick" I either haven't responded or have had negative reactions to all the other meds I've tried except pentansa. I was seeing a general GI dr when I was first diagnosed, and she had me on pretty weak meds that improved my symptoms though i still had daily symptoms. Over a year ago I moved and started seeing an IBD specialist and they really make me believe the goal isn't just getting my symptoms managable, but to get to remission. I don't know when/if that's going to happen, but it's amazing how much impact your support team can have. I dont know if I answered your question, but I hope this helps, good luck!

 

[karlyg]

Been at the 20mg level of prednisone now for almost two weeks, after having gone down to 15 and then 10 but having to come back up on dosage when I started getting symptoms again. Now it feels like the 20 mg level is losing its usefulness as the pain is pretty bad and still having a good deal of bowel movements. And SUCH fatigue!
SO, I have a GI appointment on Tuesday morning and I guess I'll see then if I should just stay on the roids for a while longer or of they'll start talking about biologics again.
Thank you all for your support and input - it is truly appreciated. I'll keep you posted!

 

[beth]

I'd always recommend trying the bigger guns, especially Humira.... I'm just a wee bit biased as Humira is working very well for me. Discuss with your GI the pro's and con's based on your disease, but don't be afraid to go on to Remicade or Humira if they consider it necessary.

 

[karlyg]

Back up to 40 mg of pred, flagyl and cipro, and basically just trying to keep the pain under control without having to go back in for IVs. Today was a pretty decent day, though, as I didn't overdo it too much with thanksgiving meal but still got to enjoy some and have a good time with family and friends. Hopefully the new (well, new again) meds will start to kick in and a restful weekend will get me back on track. Hope you guys had a good day! I'm very thankful for all of you!

 

[senoraharvey]

Hello!

I'm sorry to hear you also are struggling with the what seems to be the never-ending cycle of Crohn's. I have been on Humira for 3 months... it has eliminated all inflammation in my gut & rectum (I have an abscess and fistula). They are going to go ahead with a surgery for the abscess because the humira has been so successful with my system. There are some weird side effects occasionally, but still worth it. For me, I've had hair loss, but I'm taking a hair, skin, & nails multivitamin to compensate and it is helping a little. Also, humira suppresses the immune system so I just recently had a cold and it was on its way out with a cough... The cough came back with a vengeance the 2-3 days following my shot. I haven't noticed that I get sick more often with humira, but I do think it can keep you sick a little longer than the average person. With me, my cold should have been gone by now, but the dose extended the cough for 4 days or so. Anyway, no pain/inflammation makes these things worth dealing with.

Hope this helps!!! Good luck!

Vanessa

 

[karlyg]

Thanks, Vanessa! I seem to be improving on the pred/flagyl/cipro cocktail, at least compared to last week. So, I guess we'll just see what happens from here as far as whether it can get me into any kind of remission or not. I really appreciate your input about your experiences!

 

[Lisa]

Just catching up here - so are you on anything besides the pred/flagyl/cipro?

Waaayyyyy back when I was a youngster, when I would go into remission my meds would be stopped - only for me to end up flaring again - first after a couple years maybe, then a year - then shorter and shorter periods in between.....this sounds like what you described.
Maybe if the Entocort IS working for you when you are on it, you should stay on it......

And yes, while it is a pain to take pills for years and years, it is a necessary evil with this disease - as you only go into remission on the medications, you are NOT cured.....

Good luck with everything - hope the meds kick in soon and you start to feel better.

 

[karlyg]

They took me off the Entocort when I was in the hospital because they had switched to pred, which I'm still on at 40mg/day. Not sure what the plan is afterwards though. I know I'll have to go back onto something long term, just not sure what. I'm also on Pentasa.

 

[McStew]

Hi There, just read your post, I can completely understand what you're going through. My consultant has recommended that I go on Humira, I've tried other things - imuran, the steroids, and have been on pentasa for years. I'm having a really difficult time coming to terms with needing to go on humira. Anyone I talk to says that the most important thing is to get well...I just feel like it's such a strong drug (plus I HATE needles)....and, at the end of the day, I've been ill for months, I don't really remember what it's like to feel well! Maybe (I hope) it'll be a blessing in disguise. Best of luck in whatever decision you make.

 

[Grumbletum]

Yes, I think that's a danger when you've been ill
for a while. I went into hospital for prep tests for surgery cos of an abscess and fistula. Ironically, I started to feel so much better after antibiotics a week before I went in and the surgeon confirmed the fistula had healed. But the advised the Infliximab because there was still an inflamed section of bowel.
After my second infusion, I realised how ill I must have been. That scares me more than the Remi: that it was still there, lurking away in the background.

 

[karlyg]

Definitely makes me think. I finished my second cycle of flagyl and cipro today and am still having lots of symptoms, but my GI wants to see if a little longer on just the prednisone at 40mg will do anything. We shall see, but I don't see this going anywhere too good! Thank you for your support - it really is appreciated so much.

 

[karlyg]

So, it's been several days off the antibiotics now and I'm only getting worse. Spent Wednesday in the ER for pain and nonstop D and they sent me home with dilaudid and zofran pills. GI says he is not comfortable ramping up to bigger guns because, while my studies do show inflammation it is not as bad as I guess he feels it should be before going to the next step. I love my doctor but, seriously, I am not functioning, missed most of work this week, and doing nothing is just not an option! So, we agreed I should see a new specialist, so I have that in the works now and feel a little more hopeful. Now I just have to figure out how to get from here to there, as in what to do until I see this new dr and have a new plan. Hoping to avoid the hospital especially since my dr I'd see there already doesn't want to do anything, but we'll see. One day, one hour, one pain pill at a time! Thanks for letting me vent - you guys rule.

 

[Lisa]

WTF....(sorry!).....but if what you are on isn't working, what does your doctor plan to do? Let you just go along with what you are on?

Did he say you are improving on what you are on? If you can't function - and you know that - you need to tell your doctor you need to move on.....I had to fight some to get on to bigger guns myself - when Remicade was first talked about for me (I brought it up) - I 'wasn't sick enough' for it - it was only after a couple of YEARS of fistulas that I finally was able to start on it - how I wish it had been earlier!

 

[karlyg]

I have an appointment on Monday to talk with my doctor, but I think we've both come to the conclusion that he's just not the right dr for me to be seeing anymore. I'm fine with that, and I am hopeful that the IBD specialist I've been referred to will be better equipped to help me. But my big concern right now is what happens in the meantime. I mean, it is crystal clear that what I'm doing now isn't working and I kind of think my current doctor is just holding his breath and hoping I'll magically get through until the new doctor takes over. I, however, am worried that it's more likely I'll end up in the hospital before I can even get my appointment with the new doctor, and could lose my job or have to take a leave of absence or something because of all the pain I'm in and pain meds I'm having to take (not too easy to work when on dilaudid!). Basically, I'm trying to work my ass off from home right now in anticipation of a likely admission to the hospital in case I can't keep the pain under control, and then maybe that'll force my doctor to do SOMETHING while I transition to the next dr. They can't just wash their hands of me!

 

[karlyg]

Big-ish day for me tomorrow with appointments. Have my first pain management dr appt in the morning which should be interesting, and then "the talk" with my GI about what my next steps will be to try to get this flare under control and me into remission. I'm already decided on the new GI/IBD specialist I'm going to go see, so it's really more of a "what to do in the meantime so I can at least vaguely continue to function until I can see this new dr and get a real plan going" kind of deal. I just hope he takes it seriously and doesn't try to just give me the old "hang in there kiddo" routine, because, quite frankly, that's just not going to cut it the way I've been feeling these past couple of weeks/months. I've gotta be strong tomorrow and demand that, if he won't do anything, he'll at the very least lobby for me to get in with this new specialist ASAP. Any thoughts or advice/suggestions for me as I go into this appointment? I know he doesn't want to make any drastic changes right before turning me over to the other doc, but are there less drastic things like higher doses of pred (on 40 now - never thought I would want more!) or things like that which might give me some stalling room? Thank you for getting through my ramblings - I'm a little anxious about all this because I feel like it's my chance to not get totally dropped to the curb on my own and I don't want it to pass me by!
Hope anyone who's reading this gets a good night sleep and you have my sincere appreciation for even just reading through my vent.
Karly

 

[sunras]

Good luck Karly! I have a GI appt tomorrow too, though it's just my regular 3 month exam. I've had more doctor's appointments than I care to admit, but my number one recommendation is to go in with a list of questions/comments you want to discuss with your doctor and stick to it. Also have a pen out and ready, and take notes as soon as you can so your doctor understands you are really engaged in what's going on. I know it sounds a little silly, and (unfortunately) some doctor's won't really care, but I know what it's like when there's so much pressure to try and remember everything you want to say on top of remembering what the doctor's responses are, so it's good to have something written down before hand for a little extra support.

Is there anyone who can go with you to your doctor's appointment? if you have a friend or family member you trust to be there for morale support that can help a lot.

I hope it goes well tomorrow!

 

[karlyg]

Thank you do much for your kind words of encouragement and advice. I may ask my mom to go to the appointment with me based on your suggestion - I think that might make me feel stronger and help me remember everything. I hope your follow up appointment goes well too. Have a peaceful night.

 

[karlyg]

Feeling more hopeful today. Pain management doctor was super nice and is trying me on a long-acting continuous release pain patch, which he says is far preferable to pills for someone with GI issues. Also giving meds for breakthrough pain. This should hopefully help get me through until I can get in to see the new specialist. Saw GI as well, and he is going to call the new specialist tomorrow to try to get me an appointment ASAP. He wants me to begin slow taper off the prednisone but I need to wait to make sure I can get the pain under some level of control first. Hopeful that I'll at least be able to make it to the next doctor now, who will hopefully be able to help with the ultimate goal of getting myself into remission and getting this damn CD under control!