When Humira fails..

[j.tiam]

Hey there,
I am new at this but am very intrigued by the website. It sure is comforting to know that there are other people who are feeling and experiencing some of the same symptoms as me!

I'm a University student, I haven't once been completely stable since I was first diagnosed with CD in 2007. My G.I told me that surgery wouldn't help much. I was on Remicade for a bit over a year, and then I was switched to Humira - which I was taking once a week.

After a recent flare-up which landed me in the hospital yet again, I have just been put on prednisone again and no Humira until my G.I figures out what to do.

Anyone have this kind of mishap before? Has anyone been on Humira and it doesn't work as effectively as anticipated?!

Please let me know.

 

[ChefShazzy]

Hi, welcome to the forum!! I have been on Humira about 5 months; I do find it is helping with my Crohn's symptoms but I may have to discontinue it because of the reactions I've been having... I guess my next step would be Remicade since I haven't been on it before... But I am wondering the same thing as you, what's next?? I know they were doing a clinical trial with Cimzia last year, which I tried to get into, but have heard nothing about when it is coming out. Sorry, I wasn't really able to answer your questions, but maybe someone else has info about Cimzia being available in Canada soon? Oh, j.tiam, have you been on any other meds, such as methotrexate, Imuran or 6MP? Hopefully you won't need surgery; but if it comes down to it, a lot of people here have experience and we can all help you through it. Best of luck.

 

[j.tiam]

Hi Sharon, thanks a lot for the quick response!
I haven't heard of Cimzia yet but I do have an appointment with my G.I Wednesday so I'll write it down to ask her about it!

I've been on Remicade before and Imuran - which I later discovered I am allergic to! I'm just a bit confused if maybe I can take Humira with another drug to settle my symptoms a bit? I'm not very familiar with methotrexate but I was told that it is one of the introductory drugs and that Remicade and Humira are stronger, after I was told that Humira was the strongest I got worried that there would be nothing else!

I've been on prednisone for a bit over a month now and it is even starting to lose its effectiveness, ever occurred to you?

Thanks!

 

[Crohn's 35]

Hi J, welcome to the forum! Wow you are like me allergic to Imuran and also Remicade. I tried Humira too right down to a weekly shot, and I was so hoping it would be 'MY" drug. I am like Sharon and on Methotrexate, on my 13th shot today, and still in hopes it will work.
I am surprised your Gi said surgery wouldnt work. I guess it depends on where and if you have strictures or not. I had 2 resections in the Ileum first one was great, the second 10 years later wasnt. Methotrexate is an old drug that has resurfaced and has promise to those who fail on the biologics, not every fairs on those drugs. I was trying to get Cimzia too, but missed the trials here, but my Gi thinks it wont work seeing as the others didn't. I hope you are taking adequate amounts of Calcium and Vitamin D3 because Prednisone robs your body of calcium. Hopefully it is quick taper, but like you say, what is left? Pentasa and Entocort could help, I dunno. I am thinking of going on a natural product soon. Hope you stay and learn with having this disease, it is good to have support. Hang in there. Where in Canada are you?

 

[ChefShazzy]

I take Humira with methotrexate... a pretty common combo, but who knows which drug is actually working? Or are they both working?? Hard to say. You might want to consider asking about taking another drug WITH Humira, or asking for more frequent injections (they can prescribe every week or 10 days instead of every two weeks).

Have you been taking the same dose of prednisone, or have you been tapering over the last month-and-a-bit? When I taper I usually get symptoms reappearing. I've been on several rounds of steroids, and each time I started a new round it seemed to take longer to 'kick in'... But this last round I was able to come off the steroids with the Humira/methotrexate and am doing well so far (not counting the reactions to the Humira, ugh!).

Since you're new, you might not know about the Humira Club thread. Just do a forum search for "Humira Club", and you will read a bunch of our stories.

 

[AmyWooden]

Hey there,

After a recent flare-up which landed me in the hospital yet again, I have just been put on prednisone again and no Humira until my G.I figures out what to do.

Anyone have this kind of mishap before? Has anyone been on Humira and it doesn't work as effectively as anticipated?!

Please let me know.

May I ask why you switched from remicade to humira? Was the remicade becomming ineffective?

I was on Humira for a little over 6 months. At first it seemed to help but that soon faded. I was only taking it every 2 weeks though. I went back on Remicade and that seemed to work better for me for a while. I'm now having symptoms again but I also have IBS which could be the culprit.

Prednisone seems to work for many people. But the side-effects are enough to make me not go back to it. It's a powerful drug and has gotten me through many tough times. I hope it does the same for you while your doctors find the right medicaton.

Good luck and hang in there!

 

[glum chump]

I, too, was on Humira after having failed on Remicade. In the beginning, Humira seemed to offer some relief for my symptoms, but after a few months (4-5), it seemed to not be as effective. At the six month mark, I started injecting Humira once a week, but that didn't offer any relief either.

I continue to take Imuran as maintenance, but I've "failed" all other treatments (with the exception of Prednisone which my GI won't prescribe anymore). Since Humira, I've been on two drug trials, one which worked really well but the study is over and I can't get access to the drug anymore.

Now that I don't have any 'normal' options, I'm thinking of talking to my GI on Thursday to try me again on some antibiotics. I'm not sure if this is an option for you...

 

[j.tiam]

Hi there,

Thank you to everyone that has given me advice and support! It is such a relief and I feel so comforted that even after just joining yesterday, I am receiving responses and advice from so many different people!

Glum Chump: I have experienced the same issues as you, the Humira just started to stop working effectively, even after taking the injections on a weekly basis. Unfortunately, I am allergic to Imuran therefore I can't take that along with the Humira. People have suggested Methotrexate and Humira might work together? We will see when I see my G.I tomorrow, thanks for the advice!

Amy: I was on the Remicade for approximetely two years and when my symptoms started to come back, my G.I decided to switch me over to Humira. I originally started with taking it ever two weeks, I was feeling great! I was optimistic that this would "heal" me and be the answer to my prayers! Unfortunately less than six weeks in, my symptoms started to come back and I had to increase my injections to being weekly. I was doing quite well with that dosage but around 6-8 months ago, I was in the emergency room too many times to count. Now I am not on Humira, I am just on the prednisone until my G.I figures out what to do with me when I see her tomorrow. I am finding that the Prednisone isn't even working anymore. I used to call it my miracle drug, but now I'm finding that my symptoms are still really bad, ever happen to you?

Jettalady: I have to say that our situations seem to be very similar, other than the fact that you have had surgeries and I have no, also that you have had CD for a few more years than I have. Is there anything in particular that I should be asking my G.I about surgery tomorrow? I am taking time off from University until my health is all sorted out and if I'm going to get surgery, I would rather it be now than later as my symptoms seem to me getting worse everyday. I'm located in Toronto, I was in Halifax for the past two years as a Dalhousie student but now I have moved back to my native city of Toronto in hopes that the support and care from my family will help me! Thanks for your support and I really hope to stay in touch!

Thank you everyone! If you have anything to share with me please feel free to private message me and I will be supportive for you like you have been for me.


Jasmin.

 

[Crohn's 35]

Hi Jasmin, Good that you have support at home, all of us need help from time to time as spending times in hospitals are hard to bare alone.

I am sure as well as I and some others who have just had surgery recently can also help out here. Take a list of what you have done for meds, helps them to remember quicker, keep it in point form, too long and your doctor will not even read it, ask him about surgery and what kind and if it is right for you.
Can it be done laproscopic?
Can it be done soon?
Tell your doctor that you are in University and you really dont want to miss school. If surgery isnt warranted,
then what meds are next?

Keep us posted and let us know what your doctor says. I am so glad everyone is here and is helping you out, you came to the right place for help and info. Glad you are here too because no matter how long some one has had Crohns , there is always something new to learn. Take care and good luck.

 

[AmyWooden]

Hi Jasmin!
Yes, unfortunately I'm going through a similar situation at the moment. I've been on many medications in the 21 years I've had CD - from asacol to humira to methotrexate to imuran. The only sure fire bet for me is prednisone, but I've been on it so many times and for such extended periods that it has destroyed my joints and bones and I have vowed to never take it again. Of course that leaves me with nothing to rely on now.
I am going to see my GI in two weeks after I get yet another CT and small bowel series. For now I'm just trying to do whatever I can to feel better - changing my diet, getting enough sleep, etc...
Good luck to you! I hope you get some good news tomorrow at your appointment. Please keep us posted!

 

[j.tiam]

Hello all!
Sorry for the delay in response. I am currently in the hospital, I was admitted on Thursday. After seeing my g.i she was quite worried about how low my blood pressure was, even though I usually have low blood pressure, she decided to get me to come in and get i.v fluids. She decided to take advantage that I got a bed here so she performed more tests and discovered that I have a couple of different infections in my gut and colon, which explains why I haven't really been responding to the prednisone and the Humira. She can't start me on the humira and methotrexate until my infections are gone so I'm stuck here getting my anti-biotics and fluids.

Starting to feel like myself again, a bit. I wasn't expecting to be in here for long but it looks like I will be in here until Monday or Tuesday.

Thanks so much for all of your kind words and support! Please keep me posted on your health and try to entertain me as I am bored here!

Jasmin

 

[Crohn's 35]

Awe so sorry Jasmin, I too was in the hospital in Feb and my potassium was dangerously low. To top it off they thought I had colits in the large bowel, after a scope and biopsy it reveals a gastro bug...has been bugging me a little since then. Take alot of probotics, some good ones, it will help your body regulate those little bacteria critters to get lost. NO one likes to be in the hospital but rest is sooooooo important. You are lucky you have a laptop . Hang in there, keep us posted!!!