Help me make an informed decision about medication: 5-ASAs or switch to immunomodulators or other

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Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 6/15/2010 9:16 AM (GMT -7)   
I met with my rheumatologist yesterday as a follow up to my appt 6 weeks ago where we talked about my sacroiliac arthritis and ankylosing spondilitis.  Yesterday it was his opinion that I do NOT have AS.  However, since one of my primary complaints about IBD for the last 5 years has been the associated joint pain, he acknowledged that my quality of life is getting worse and that we need a new plan.
His suggestion was to try a cortisone injection into the SI to relieve the discomfort there.   We didn't discuss, but I fantasize, that this will relieve my chronic hamstring injury AND my knee pain.  Then I could do some fitness walking, or swimming, or maybe even - gasp - some easy jogging!  It has been 3 years since I've been able to do any regular exercise without pain.  I'm only 48 - I like being fit - and this is very depressing for me.
His thought was that if the cortisone injection works, it's an easy fix and should carry me for a few years.  If it doesn't work, or is not sufficient, he suggests talking to my GI about revising my meds to a stronger class.
Right now I'm taking 3 g pentasa, 1500 mg sulfazine, a ppi, and supplements to address nutritional issues (folate, D, omega-3).  In the 10 years since my symptoms started, I've never been on any of the newer class of drugs.  My GIs have consistently focused on 5-ASAs because they're the safest class.  And I'm resistant to taking meds that I don't "need."
However, I am unhappy that I can't exercise.  My gut issues are annoying but not severe.  Will MTX or 6MP or Imuran or Remicade or Humira be a game changer?  At what cost/risk?

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 6/15/2010 12:34 PM (GMT -7)   
You might consider trying methotrexate. It's particularly good for joint symptoms. I wouldn't jump to the biologics unless the less powerful immunomodulators do not work. Regarding the cortisone injection, my impression was that you get a few good months out of them, but not much more. However, that is not an area in which I have done any in-depth reading.

Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 6/15/2010 1:02 PM (GMT -7)   

I have experience with your whole situation, but I haven't had a good outcome, so it's not a positive story to read. 

I used to get cortisone injections in my ankles, as that used to be where my arthritis was the worst.  The first one I got worked for a week and it took about 4 days to be able to use my ankle, so that was a giant waste.  So, they used a different med on the other ankle and it worked for several months.  I've had them done either two or three times in each ankle over the last couple years.  They normally work for several months each time now.   

I used to work out at the gym 11 hours per week.  I haven't been to the gym in over 3 months now.  I'm 29 and there are days that I walk with a cane or on crutches.  My "Crohn's related arthritis" has been flaring for over a year and a half now and we haven't been able to get it under control.  I've tried Remicade, Humira, Cimzia, Pentasa, 6mp, Sulfasalazine, prednisone, tons of arthritis drugs (NSAIDS, pain meds, etc.) and Mtx.  I've had to stop every arthritis drug we've tried so far because it either A) hurt my stomach/aggravated my Crohn's or B) elevated my liver enzymes.  The biologicals don't even help enough with the arthritis and wear off too soon (and for some reason, my docs say they can't get them approved more often).  The drug that helped the most was Mtx (but only in the injectable...the pills hurt my stomach) but I had to stop it due to elevated liver enzymes. 

My rheumy wanted to take me off of Humira or Cimzia, whichever I was on at the time, and switch me to Enbrel, as her RA patients were responding better to it, but my GI said no because my Crohn's was in remission and had proven difficult to treat in the past and he didn't want to screw things up.  So, as a last resort, we are trying Plaquenil, but that can take up to 6 months to have it's full effect and I think I'm in the 6th week. 

So, morale of the story is that there is no way to know which drug is going to work without trying them.  You may get "lucky" like me and have none of them work.  I completely understand your frustration with not being able to work out anymore or do other things you used to do.  I feel like I'm not myself anymore.  There are a lot of arthritis drugs out there, but you need to get your GI and rheumy working together, as many of them can aggrevate your Crohn's.  Or, you can try the bigger guns that are supposed to treat both, like Mtx or a biological.  Only you can decide what drug is too risky to be worth trying.  I'd rather take the risk that comes with the biologicals and get my life back, but not everyone feels that way (and I haven't gotten my life back in regards to the arthritis anyway!).  I hope you are one of those who finds a treatment that helps both and something that you are comfortable with taking!       


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 6/15/2010 1:15 PM (GMT -7)   
Zena and Writer, thanks so much for your thoughtful responses. Zena, ugh, to be on crutches at age 29 is just aweful. My liver enzymes were evaluated as I got on sulfazine, and they're fine, so maybe that's good news for my future tolerance of these drugs. I hope Plaquenil does good for you - you need a break!

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 6/15/2010 6:38 PM (GMT -7)   
I'd give the cortizone shots a try. The worst thing is that they don't work or wear off too quickly; but you may also get lucky and it maybe enough to tide you over for a while. And if that's the case, you can move on to MTX or biologics.

My husband last year had some very severe inflammation from either reactive arthritis, or inflammation related to crohn's disease, they don't know which. And they gave him several cortizone shots, which improves things for only days, not even months. So, we knew that that just wasn't going to be enough. So we moved his remicade from every 8 weeks to every 6 weeks, and put him on prednisone 40mgs and that got him through. He's now off the pred, and his remicade is back to every 8 weeks, and he's been doing ok.

I'd still try the cortizone shots though, there's really not much harm in trying them; because you can still move on to MTX or biologics if they don't work.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

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