me again-getting cold feet

Hi All

Its me again and I am supposed to start Humira soon. My doc is thinking I have Crohns instead of UC but my biopsies do not confirm either way. I had what you would consider a mild flare last week when weaning to 15mg of prednisone and then had a sig scope which showed ulcer /inflammation/friability in the transverse colon (which I thought was new but he said showed up on previous scope -just not healed) but the rest of the left side had healed. I went back up on prednisone (feel so foggy and awful on this drug) and got insurance approval to start Humira. I had a sig scope last month that showed moderate per biopsy disease 50-70cm. I asked the doc if I had no other choice (regarding Humira) today and he said there was a clinical trial going on for dietary management SCD or Mediterranean for Crohns patients but I don't think you can be weaning prednisone while starting the study. I still have the pain around the splenic flexure area.

Do you think I am fast tracking to biologics? I think there is more bleeding with UC than Crohns and that may be why I don't have lots of blood etc. I am so scared. I do appreciate your positive comments regarding Humira in my previous posts but it is such a big step.

I would have to get off the prednisone or at least not wean (i.e. stay on one dose for 6 weeks) to be part of the study. I think the idea behind Crohns per recent articles is to get ahead of the inflammation before strictures start or it gets too out of hand. They are finding that if they start someone with milder disease on the biologics that they can prevent future complications. I don't want to jump to the Crohns board... I don't know anyone.. lol. My friends are here.

It's only a big step if you build it up to be one. Not sure why you've built a mountain out of a humira pen, but it's top is up beyond the clouds

I've had no side effects from humira's sister-medication, remicade. It did give me a remission though.

Did I worry before starting it? You bet I did!

Was all that worry in vain? Yes.

There's no such thing as too fast, or fast tracked. You have symptoms and need a resolution. Why save the meds forever and not take that next step while you suffer? A med either works or it doesn't. Best to findout and not delay the inevitable.

I fully understand how you feel. I refused Humira for over a year because I was afraid to take it. I was so nervous leading up to my loading dose that I postponed it for 3 weeks after my Humira arrived. When I was ready to do the first shot I started sweating and felt like I was going to pass out. I can honestly say that I felt foolish after that first shot. I did the next 3 pens in rapid succession. I have had zero side effects and my only regret is that I waited so long before trying it. At the point that I started Humira I had been officially diagnosed for 3 years and was off meds for a year. I believe that I had UC for 10 years prior to diagnosis which was brushed off by my GP. When I went into remission it was pure bliss. After being sick for so long I forgot was normal was. I know you are scared and your mind is playing a tennis match, back and forth but once you start it you likely will feel so much better. I wish you the best in coming to a decision that works for you.

Countess, go for it! You will feel SO MUCH BETTER if it works. Humira has great success rates for either Crohn's or UC (as does Remicade). The ongoing inflammation is riskier than the risks of the drug itself. I'd even argue that prednisone is much riskier to stay on long term than Humira or the other UC/CD biologics. Use common sense, get your (killed) vaccines, wash your hands and you will be fine. And you'll be happier because you'll be less inflamed and off the prednisone.

oh my thank you all so much!!! yes I have to just go for it because I feel like hell now.

Susie I started to feel unsettled at 20mg then 15mg blood started showing up again. By the evening of Nov 8 I had diarrhea again with blood scattered in. So I was going into a flare while on the 15mg. I have Bentyl and it does help with the pain when I take it. After the scope on Nov 9 and while waiting for Humira my doc wanted me to go back to 20mg but I did 25 (which I kind of regret not just trying the 20). The problem was that when I got to 20 a few weeks ago, I was eating less and less because I was feeling unsettled. That is not how I should have felt if I was going to survive the pred wean.

Now on 25 I still have the pain (?spasms),lots of gas, but only 1 BM a day no blood. Its been 2 years though and I had a nice remission late March to September but the other times I was shaky (although not 10-20 bms a day etc). I just want to feel like I did March to Sept and I think you have all convinced me that Humira is a good option. My fears are that I am not having enough patience and jumping too fast as my flares have been 4 bms a day not 10-20. Other fears are the obvious infection/lymphoma etc etc. Prednisone is killing me I know that!!!

Susie --- thanks for commenting --- having Crohns yourself! The clinical trial for the diet/they provide the food for 6 weeks.

What helped me was looking at the odds of risks versus benefits. What's the odds that Humira will help improve your UC symptoms: about 65%. What's the odds you'll experience a lymphoma from Humira: about 0.06% (or 6 in 10,000) assuming you are concurrently on an immunomodulator like imuran/6MP. The odds of your average, healthy person on the street without any medications is 0.02% (or 2 ion 10,000). So, yes, your odds are increased but only a small amount. Now let's look at your odds should you get the lymphoma, 66% are able to put it into a remission (so, you take that 0.06% number and dice it again into fractions). Very long odds and not exactly something to loose sleep over.

Infection risk is a bit higher, but I've been fine without any increased infections since I've been on remicade, over 4 years now. You're just more vigilant about hand washing during cold/flu season. If you suspect you've got a UTI, bronchitis, sinus infection or other serious infection requiring an antibiotic then you seek-out a treatment asap rather than trying to wait it out. As infections requiring antibiotics are going to hit you faster, and symptoms will be worse for those on biologics than those who are not. Regular cuts, bruises, and scrapes are of no concern, and there's no reason to become a total germophobe either. We have a number of medical professionals, early childcare teachers, and others who use biologics yet manage despite their increased exposure to those who are most likely to be ill. It's manageable and not a big worry.

The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Rip off the bandaid

I started remicade when I was 30 weeks pregnant. I was terrified of going into preterm labor. I was in a terrible flare and stuck at 25 mg of pred. Within 6 weeks I was in remission and stayed there for 4 months post partum. It was the hardest decision I ever made...but the best at the time.

Whats the worst case...you stop taking it. Nothing is ever written in stone. Good luck!!

From what i have read the lymphoma increase is with males in their 20-30s on combo therapy. Again the odds are very low regardless if i remember correctly.

Regarding 5 asas yes I think the goal is to only be on the biologic. When i started remi i immediately dropped lialda. I personally felt that it wasn’t helping any. I was hospitalized and started iv steroids etc so i didn’t feel the need for it.

With the mild flares I’ve had since starting remi i personally haven’t thought about adding a 5 asa back in. I’ve done short steroid tapers or cort enemas. Plus i recently found out I’m intolerant to them...when i tried rowasa.

It’s good to have them in your arsenal tho as with anything else you can throw at this disease. Combo therapy helps a lot of people.

Countess..I hope the med change is the answer for you! Agree with the others and would add this perspective. I have a great GI...and I totally freaked out on the poor guy when he told me it was time for biologics. When I was ready to listen, he reminded me that he’s seen so much success with biologics, that he and many GI’s now take a top down approach to treatment. Meaning even just a few years ago, biologics may have been a last resort but not the case anymore.

And - needles freak me out too. The Humira pen really isn’t bad...truly. Take care!

I am so glad you are ready to take the next step towards remission! Let us know how it goes.

Post Edited (Mrs. Brady) : 11/16/2017 7:25:16 AM (GMT-7)