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Anyone here 65 or older and taking a biologic or 6 mp?

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Crohn's Disease
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Posted 4/4/2014 12:58 PM (GMT 0)
My Gi retired and my new one wants to be aggressive in treating my Crohn's. I have mild to moderate Crohn's. I was diagnosed at age 65 and will be 70 in August. I have a lot of things wrong with me because of age. I have type 2 diabetes, gout, level 3 kidney disease, hypertension, etc. I am afraid these strong medicines will give me pancreatits, or ruin my kidneys or liver (my organs are also 70 years old and I don't believe we respond to treatment the same way younger people do). I don't believe there are any studies targeting the effects of treatment on 65+ people. So, I am looking for anecdotal info from people my age who are on a biologic or 6mp. Is there anyone out there who can respond or am I the oldest person here with Crohn's? I was on 6 mp for a short time at age 65, but not since. I just feel like the medications are going to be the death of me.
Posted 4/4/2014 5:00 PM (GMT 0)
I'm older too. My sister has Crohns since she was 12. I was diagnosed last year at age 60.
She's successfully taken 6mp for 17 years. I got sick from it so I've been on Remicade since June. Now they say I've built up anti-bodies so Humira will be on the horizon for me. So I'd say yes, meds haven't been great!
Posted 4/4/2014 5:06 PM (GMT 0)
Also. Gi have tried to get my sister to switch to Remicade, even though her levels are fine. With that said, she has bowel issues. Things are not perfect!! She's like you. Doesn't want to upset the cart.
Posted 4/4/2014 5:06 PM (GMT 0)
When I first started Remicade, I met an old lady of 84 who'd been on Remicade for 6-7 years. She got Crohn's when she was 75 and apparently Remicade was the only thing which worked for her. But that said, I think with your medical history, you are absolutely right to be concerned. If you are still on Prednisone (as per your sig), I'd be doubly concerned.

I found a couple of things. The evidence is patchy and contradictory, partly because the studies themselves don't seem to be very good. The biggest risk is serious infections.

www.wjgnet.com/1007-9327/full/v17/i22/2734.htm
acgmeetings.gi.org/pdfs/09pgcourse/ACG2009PG1062.PDF (Zoom in if you have trouble reading this)

This paragraph from the second link is what would most concern me as an ill elderly person: Although RCT [Randomised Controlled Trials] are held to be highest standard ... strict inclusion/exclusion criteria do not relate to clinical practice, i.e. real world patients with multiple co-morbidities that would never be accepted into an RCT.

And: RCT population is often healthier due to restrictive entry criteria, not representative. Result: caution about safety of particular formulations unstudied particularly in the elderly

Think that's clear enough and speaks for itself. So far there seems to be no studies which distinguish between the fit and the frail elderly. It's one thing a healthy 70-year-old going on Remicade and quite another thing an unheathy 70-year-old with multiple health conditions going on the same drug. Obviously, it has to be your decision, but if I was in your shoes I don't think I'd agree to the Remicade.

Post Edited (NiceCupOfTea) : 4/4/2014 11:09:40 AM (GMT-6)

Posted 4/4/2014 6:20 PM (GMT 0)
@Trishke Thanks for the anecdotal info.
@ NiceCupofTea Thanks for your very helpful info. It has always bothered me that we older people don't get the benefits of clinical studies for our age-group. Geriatric medicine is sadly lacking for Crohn's disease. What kind of treatment would you opt for if you opted out of Remicade?
Posted 4/4/2014 8:25 PM (GMT 0)
Crohn's is seen as a young adults' disease, which it mostly still is, but becoming less so. According to the second link I gave, a quarter of newly-diagnosed CD occurs in the elderly, which is higher than I thought - thought it was more like 15%.

Good question. I'm not sure... :-/ You said you tried 6MP once for a short time. It may be worth re-trying 6MP or azathioprine at a very low dose in combination with allopurinol; this will reduce some of the toxic side-effects at least, though I don't know about all.

If your Crohn's is located in the colon, I'd also consider sulfasalazine. Not everyone can tolerate that, but if you can, it seems to be the only 5-ASA which has evidence of being modestly effective in Crohn's.

Wellbutrin is a TNF inhibitor (like Remicade) and some people have used it off-label to treat their Crohn's. I'm not familiar with that, but if you google Wellbutrin and Crohn's you will find more info.

Low Dose Naltrexone (LDN) is controversial, but I'd say there's just about enough evidence to make it worth giving a go. The hardest part will probably be getting your GI to agree to prescribe it. Here's a current review on it: onlinelibrary.wiley.com/doi/10.1002/14651858.CD010410.pub2/abstract

I'd also consider meds purely for symptom control: antidiarrhoeals, antispasmodics, bile sequestrants (for bile acid diarrhoea). These will do nothing for the underlying disease, but may make the symptoms more manageable. Ditto cutting out foods which bother you, but there is hardly a Crohnie alive who doesn't do this already. Medical marijuana can help with the pain side of things.

That's about all I can think of right now without descending into ever wilder territories. The more obscure a treatment is, the more hideously expensive it tends to be as well. I hope there's at least one or two things here which can help.
Posted 4/5/2014 2:14 PM (GMT 0)
Great advice from NCOT! I second that.
Posted 4/5/2014 3:00 PM (GMT 0)
I have UC rather than Crohn's, but I started on Remicade at 61 years of age. I'm now almost 68 and still in remission. I don't think age needs to be a barrier to trying new treatments.
Posted 4/7/2014 5:24 PM (GMT 0)
I was 57 in june of 2007 when I was diagnosed with CD in the colon after having two massive rectal fistulas and setons installed.   A month after my CD diagnosis ,  I was diagonesd with prostate cancer, and then a couple months after that, I was dianosed with early melinoma skin cancer.  Talk about a lot to absorb in one year, especially when I have never been sick a day in my life up until that point.

The GI told me that I have to learn to live with this disease for the rest of my life , and  if I don't go on remicade and 6mp, my fistulas will never NEVER heal, and my symptoms like loose stools and white mucus will only get worst.  He told me, there is NO OTHER WAY! 

  Like you , I was scared to death to take a immune suppressant drug knowing that I already had two forms of cancer and couldn't deal with any more.  After much research, I decided to skip my GI's demands that I go on remicade, and I went with the diet approach and started following the SCD diet which I did with fanatical 100% dedication.  After 5 months of dedication to the diet, both fistulas were healed up completely and the setons removed.  All my other symptoms were completely gone too. The only drug I took was pentassa. That was in 2007 and to this day , I have not had one flare or one symptom from my CD and I still follow the SCD diet and take pentassa.

As for my prostate cancer, I had surgery in sept. of 2007 to have my prostate removed and to this this day, I am still cancer free. 

In 2007 I also had surgery to remove the melinoma,  and to this day, I am still cancer free with respect to that also.

There are alternatives to biologics, but all depends on the person and how much prior damage you have in your gut.  The SCD diet seems to work best in people newlly diagnosed like I was with little to no prior damage in the intestines or colon.   Read the book "breaking the vicious cycle"  which talks about the diet.  You have nothing to loose, and all to gain if it works for you.  I am now 64, and I still follow the scd diet and I am in better health then ever.  My chloresterol is 160, my triglycerides are 80 , my blood pressure is 125/75, and I take no other medication but the pentassa and I contribute all this to the SCD diet and the elimination of processed foods and sugar.  

 

Posted 4/8/2014 1:52 AM (GMT 0)
I don't think you are the oldest person with CD. I was diagnosed 20 yrs ago and am now 76 yrs. old. My GI docs tried all of the old medications but I continued to have flares and needed 3 surgeries plus various times in the hospital. After my old GI retired, the new one recommended going on Humira and staying on a half dose of Pentasa and Imuran. That was 7 yrs ago and I haven't been in the hospital since. I don't know how long I'll be able to stay on Humira without having side effects, but it has been a life changing medication for me.
Posted 4/8/2014 5:20 AM (GMT 0)
I'm so happy to hear this. Gives me hope.
Posted 4/8/2014 4:08 PM (GMT 0)
@NY-Sooner Thanks for your info, but I tried SCD and it didn't work for me. I think the gout and the diabetes made it too limited.
@Carol Thanks for giving me encouragement.
@Judy2 Also appreciate your encouragement. What do you do about food with Diabetes and Crohn's? I find it very challenging - especially with my gout.
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