What to do/try next?

[Mondowicked]

Hi everyone,
I'm flaring again, and I think that means my Cimzia is no longer working. This has followed the same pattern as when the Humira stopped working. First the shots worked for the entire time... then only 3 weeks...then less...and now they don't seem to be doing anything. My GI has me on 75 mg of 6MP in addition to the Cimzia, but I don't think they are working together like she had hoped. I meet with her on Friday to discuss what is next, but I'm starting to worry that there aren't any other good options. I've been on the 6mp alone, done Humira and Cimzia both with 6MP. I cannot do any of the asacol like medicines because anything ibuprofen related just makes me feel worse.

I've looked into the new SSI trial, but I have to be off of the Cimzia for 2 months before they will even think about accepting me. Right now I am not functioning, so I don't think I can make it that long without something helping....and I would really like to avoid prednisone. Also, I'm scared that if I wait, I won't be "sick" enough to get into the trial. A lot of my symptoms are extraintestinal (extreme fatigue, joint pain, nose sores, brain fog, etc) in addition to the diarrhea, cramping and pain.

Thankfully I am on paid medical leave from work, but after that runs out, I don't know what I am going to do. I'm so tired (even with iron infusions) that I have to sleep 2 hours for every hour of activity I complete. I've thought about social security as an option, but I've heard that it is almost impossible to get on it unless you look super sick or have surgery.

I'm hoping someone out there has some ideas for me...thanks.

 

[Orchid]

Hi fellow Lane County poster!

If you're worried about prednisone have you considered entocort? It has many fewer systemic side effects, though it is admittedly less powerful. May I ask why you want to avoid prednisone? It agitates my psychosis personally so I understand, I promise. There are other cutting edge drugs to try, such as Vedolizumab and there might be clinical trials you can get it on. As to the tiredness, have you also had your vitamin B12 levels and D levels checked? They could be lowering your energy level and aggravating your CD.

I got on SSI with nothing but a depression with psychotic features diagnosis at the time so it's definitely possible. Though like many states you should expect to be denied once or twice and have to hire a lawyer. (they take a cut of your back benefits, but it's better than getting none)

 

[theOcean]

Have you tried Remicade? Simponi is also another biologic that is recommended for people who have had Humira and Remicade fail.

 

[Mondowicked]

Went to the GI today. She didn't "believe" that I could be having such a flare up while being on two strong medications. Maybe something else is wrong with me, she thinks. So, I get to have a colonoscopy on Thursday. At least she got me in quick for that. My lab work came back perfect, except for high platelets. Doc wants to wait until the colonoscopy to decide what to do next. She mentioned prednisone, and sounded like she wanted to keep me on my current medications. I mentioned the Qu SSI I trial and how I might be able to get in on it if I stop the Cimzia. She didn't seem too keen on my trying to get into the study. Frustrating to have to wait longer for potential options. Might be time for me to find a second opinion. I'm trying to remain hopeful that she will let me stop the Cimzia so I can try for the trial.

Thanks for the other drug ideas. I didn't know there were so many new biologics out there. Even though my B12 and D levels check as normal, I supplement them just because it helps a bit. Prednisone makes me emotional and I get terrible withdrawals when I, even slowly, come off of it. Entocort is a good alternative if I'm not too yucky in there when she does the colonoscopy. Thanks again!

 

[theOcean]

That's awful, you can definitely be in flare-up even while on strong medication! I was on Remicade before while on prednisone, and I landed myself in the hospital with the worst flare of my life as well as complications.

It seems like your GI isn't too aggressive about treatment, which is frustrating. I guess they're trying to be thorough in their own way but it seems like they aren't listening to you as much as they should.

Good luck!

 

[scum1]

I'm struggling to hang on(to my colon) while I'm taking Humira and methotrexate. I am doing iron infusions as well. I'm thinking cimzia or simponi next. My GI says they are really no different than Humira but I said what have I got to lose?
So how bad are your symptoms? I'm only going like 6 times a day maybe 3 loose and 3 semi solid with little or no blood. I am able to go to work at least.

Then again I might just hold out for Vedolizumab which should be approved in May and available soon after. It is a new and a different biologic. After that there is Xeljanz in the pipeline which is also a different type of biologic. Both are worth looking into. Tysabri has also been mentioned to me by my GI but it has some dangers relating to a brain infection. Vedolizumab is kind of the samething as tysabri but without the risk of the infection. There are plenty of options and still more on the way

 

[Mondowicked]

Yes, I'm right there with you about 6 varying stools a day...plus abdominal pain. Then I have days when I give in and take my pain meds, which are then followed by a day of constipation. I'm kinda thinking I might be having a stricture because these stuck days happen when I eat too many veggies. I also have arthritis pain and complete exhaustion, so I've taken a medical leave from work. It's been hard not doing work and just giving in to the intense need to sleep 12 hours a day, especially since I'm not getting better yet.

Cimzia is way different that Humira. It gave me another couple of years of relief when the Humira shots stopped working. Plus, the injections don't hurt nearly as much! They also are only once a month.

My biggest hope right now is that I can try to get into the Qu SSI trial before starting a new biologic. I just got back from buying "groceries" aka low-nutritional value liquids for my colonoscopy prep. I kinda go all out with choices, so I can be as happy as possible for the drinking options. Haha.

 

[mish2575]

I wasn't aware of an Asacaol / Ibuprofen connection. I've always been told to stay far far away from ibuprofen but i'm on Asacol for Crohns.

I've been on Asacol since 1999 and it seems to work for me, big time.

 

[PsychoJane]

I cannot do any of the asacol like medicines because anything ibuprofen related just makes me feel worse.

I wasn't aware of an Asacol / Ibuprofen connection. I've always been told to stay far far away from ibuprofen but i'm on Asacol for Crohns.

There are rare occurrences where patients that present NSAID sensitivity will also have a sensitivity to asacol (and similars compounds). Often, it's a a cross-sensivity to salycilates and its especially true for aspirin and asacol (5-ASA - mesalazine) which can lead to symptoms that are close to a IBD flare up for those who are put on that and are intolerant to it. My knowledge would be limited regarding the ibuprofen link though...