Hello

[raindrop]

I've just discovered this wonderful forum.

I was diagnosed with Crohn's in 1986 and developed perianal fistula soon after the diagnosis. I took prednisone for seven years, then 6MP for 15, then tried Remicade and have now been on Humira every other week since June 2007. Up until Humira, I also had times of trying Flagyl and using Cipro. And I've had iron infusions.

I've had two resections of the small bowel, one with strictureplasty. I've had two fistula surgeries. My son was delivered via c-section back in 1989, and we also have a daughter through adoption. In early 2007, I was diagnosed with probable interstitial lung involvement with Crohn's. Humira has helped me breathe as well as helped my gut.

I've been married since 1983 to the same supportive man.

Prior to Humira, my SED rate was consistently between 60 and 110. Since Humira, it's been below 20. Hooray! C-reactive protein has also been normal since Humira.

The problem now is that stricture problems are returning, and I've begun to get joint pain this year. I had a positive ANA to Remicade in 2003 and mild hip and elbow discomfort back then, too. Now I'm wondering if this new joint pain is related to Humira.

And the other thing is that I've learned to live in Headache Land while using the biologics and am 100%, always working to avoid Migraine Land. I also have a skin rash with Humira.

If you made it this far, thanks for reading. I'm looking forward to meeting you. I wish I'd known about this forum a long time ago.

 

[bravegirl]

Hello! I am new to this forum as of today as well! I like you am also looking for support and information on this lovely disease! I too was on Humira for a time and devolped a skin rash and headaches. Mine got so bad that I discontinued the Humira and have moved on to a new study drug called Vedolimzab. So far no rash, but I do get occasional headaches! I get joint pain anytime my disease is active.....is the Humira keeping your disease in check?

 

[xJillx]

Hi raindrop and welcome! I hope these side effects aren't related to your Humira, because it sounds like it has been working for you. Have you discussed this with your GI? What is his input? You may want to do some research and post your questions in the Humira Club. I bet you'll find it helpful.

Once again, welcome to the forum and I look forward to seeing you around.

 

[David]

Hey there raindrop and welcome! Wow, you've certainly been through a lot.

Positive ANA to Remicade? I wasn't aware that they tested for that. Thank you for educating me! Do you know what the specific test is called?

Again, welcome, it's great to have you here

 

[raindrop]

Hi, bravegirl. Isn't this an amazing forum? There are so many members and so much wisdom and experience here. I wish I'd found this place long ago.

I've not heard of Vedolimzab. Do you know if you're getting the med or a placebo in your trial of this one?

Humira has been a miracle, keeping the disease in check. You get used to living with a chronic illness. It becomes an unfriendly companion as you go about your days, and you just deal with it. I never thought it would go away. But Humira has worked, and now this unfriendly companion is just a sort of scary dude in the shadows, lurking, menacing as if it might come back someday. I mostly don't think about it and enjoy having strength and stamina like I did before IBD introduced itself.

Getting the right sleep, not eating trigger foods, and avoiding bright contrasts in light and dark and using ear plugs if I'm in a place where the sound is too much is helping reduce headaches. I'm also needing gabapentin and a calcium channel blocker to prevent migraines. I have Maxalt for a rescue med, but I try hard to not need it in the first place. What's helping you with headaches?

xJillx, I love that this forum has a Humira Club. :cheers: (The smiley guy is supposed to be cheering or demonstrating the letter V.)

Hi, Dave. I'm just older and developed CD when there was mainly Prednisone and Sulfa-Salazine for treatment. New patients have more available. Someday, we'll have a cure, and Crohn's will be only a footnote in some medical journal.

I don't have a good grasp on the ANA test, but the test was called Antinuclear AB and the results said ANA Positive. The test was repeated sometime after I stopped Remicade, and it was then normal. I'm not sure what it means. I think it was through Prometheus Labs, but I'm not certain. This was in the summer of 2003.

With Humira, there's something called Human-Anti-Human-Antibodies or HAHA, but I don't know anything about that other than its name. I'm wondering if a lab test for this could explain what appear to be Humira side effects (headache, rash, joint pain).

I don't want to be sick again. I'm willing to tolerate all sorts of side effects if the Humira keeps working. Well, as long as the migraines are minimal. I couldn't live with migraines for long and would stop Humira if I couldn't manage the headache/migraines or if they get worse.

Thank you all for the warm welcome. I'm sooooooooo impressed with this whole forum. It's going to take time to get to know folks here and to read the many posts.

 

[muppet]

What IS a positive ANA to Remicade? Can you spell that out? My daughter had a HORRIBLE reaction to Remicade almost two years ago which hospitalized her and has left her with chronic joint paint even now that she's no longer on the drug (but the docs insist that's not from the Remicade). We're unable to maintain her remission on 6mp/allopurinol any longer and Humira is looking like our next option but I'm TERRIFIED of it because Remicade literally almost killed her.

What was your reaction to Remicade?

 

[raindrop]

muppet, I was just reading your post and your blog about Sarah. It's nice to meet you. You have a beautiful family. I'm sorry for all the suffering and illness.

Your best bet is to ask the doctor what an ANA for Remicade is. I only know that my GI at the time wanted to test for it. It was in 2003, and I don't remember.

Did your daughter have her reaction during the infusion? I had two scary allergic reactions during infusions. Later, I continued with a very slow drip rate and different pre-meds and could tolerate it.

 

[muppet]

No. Sarah was heavily pre-medicated and had no reactions during any of her infusions (although they did once sedate her with versed because of her fear of needles). The reaction happened several weeks after her third infusion and became quite severe.

Supposedly many people who react badly to Remicade do well on Humira, but I'm afraid to risk it since Remicade, as far as I'm concerned, caused her permanent damage.

I've also heard that Humira seems to stop being therapeutic for pretty much everyone at around the five year mark.

 

[raindrop]

I've read your blog a little more closely just now. I'm guessing the folks who generally react badly to Remicade develop allergies to the mouse protein. Since Humira is fully human, they can tolerate it. Your daughter's wasn't like the allergic reaction others have but sounds as though something's changed in her immune system. I'd be afraid the same response would come with Humira for her. (I'm just guessing and don't understand how these biologics work.) I would be afraid, too.

There are newer red box warnings about Hepatosplenic T-Cell Lymphoma primarily in adolescents and young adults using Humira. I'd want a thorough conversation with my child's doctor to understand the risks of this developing before putting my child on it.

IBD alone is scary and serious. The meds are, too. Leaving the disease to its own course can be dangerous for some who have an aggressive IBD, too. It's difficult, and I'm very sorry your family (including you, too) has to go through this.

 

[muppet]

What scares me is the delayed reaction. If it were the mouse protein I'd have expected something more like anaphylaxis (sp?), but maybe that's misguided? I'm not sure, and I have a very healthy distrust of official literature and of specialist's advice, for good or for ill.

The one specialist I trusted has just gone on indefinite sabbatical. I'm adrift right now.

 

[steph38]

What IS a positive ANA to Remicade? Can you spell that out? My daughter had a HORRIBLE reaction to Remicade almost two years ago which hospitalized her and has left her with chronic joint paint even now that she's no longer on the drug (but the docs insist that's not from the Remicade). We're unable to maintain her remission on 6mp/allopurinol any longer and Humira is looking like our next option but I'm TERRIFIED of it because Remicade literally almost killed her.

What was your reaction to Remicade?

muppet; 331505
Remicade has mice antibodies as I too had a horrible reaction to Remicade. Humira and Cimzia which I am on have human anitbodies. I was on the humira for awhile but developed problems with my nervouse system. The only reaction I have had from the cimzia is upper resp infections.

 

[muppet]

I understand the difference between Remicade and Humira. It's the similarities that bother me.

 

[David]

I did a little research on the ANA as I wasn't aware that there was an ANA specific test for Remicade. There's not, BUT it CAN be a useful test... sort of. It would be much more useful if people had their ANA levels tested BEFORE they went on Remicade to have a baseline. Then if ANA was tested later when on Remicade and was elevated, then decisions could be made based upon that.

I have an elevated ANA which caused my doctor to at one point be concerned about Lupus. But we now *THINK* it was due to my vasectomy which can cause it. Elevated ANA isn't all that uncommon and can be due to a myriad of reasons, thus the value of testing before going on Remicade.

What I found regarding Remicade and ANA levels is thus:

Approximately half of Remicade-treated patients in clinical trials who were antinuclear antibody (ANA) negative at baseline developed a positive ANA during the trial compared with approximately one-fifth of placebo-treated patients. Anti-dsDNA antibodies were newly detected in approximately one-fifth of Remicade-treated patients compared with 0% of placebo-treated patients. Reports of lupus and lupus-like syndromes, however, remain uncommon.

 

[raindrop]

David, thanks for looking up what you could find about this and sharing. In addition to the positive ANA, did you have symptoms that pointed toward Lupus?

 

[David]

Yeah, I was coughing up blood for five weeks and had some pretty bad arthritis. Good times.

 

[raindrop]

That sounds terrible. And it leads me to ask more questions. Coughing up blood is scary. Were you referred to a pulmonologist? How did this improve? I assume you're not still coughing up blood. I hope you aren't.

Are you still having arthritis pains? What do you do to ease them?

Was Lupus ruled out?

 

[David]

It was terrifying, I am emotionally scarred to this day. I was indeed referred to a pulmonologist who is the one who had the ANA levels done. While lupus was never officially ruled out, he didn't feel I had enough other symptoms to warrant further investigation. And yes, I finally stopped, though we don't know why it ever started.

As for the arthritis, I feel that switching to a vegan diet has helped that more than anything.