Immune suppressants already?

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grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 1/22/2010 7:49 PM (GMT -7)   
First some background info...

I have had this disease since 1979, Dx'd at age 14, but having symptoms for about 2 years previously that I can remember, so I've pretty much grown up with this and feel I have adjusted pretty well to it.

When I was younger and I would flare, the Dr would put me on Pred for a couple of months and it would send it into remission. I was in remission for a long time until 2007. I knew I was flaring but because I didn't have health insurance, I just dealt with for longer than I should have. My fiance made me go to the emergency room in Aug. 2008, they did a CAT scan and I was in the hospital for 3 days and they sent me home on Entocort. Well, with no insurance, I couldn't afford it for longer than 2 months and had to go off. Fastforward to July 2009, finally get insurance and go to a GI dr I picked out of the insurance book. He wanted me to have a colonoscopy since the last one had been about 10 years ago. Because I had let the flare go so long and there was so much inflammation, he ended up perforating my colon. (I came home in EXTREME pain and the next day had to call 911 cause I couldn't move, they did a CAT scan which is when they discovered the perforation) I had emergency bowel resection and ended up losing my job (and my insurance!) because of the recovery time. Got a new job in October, insurance kicked in January first and I immediately made an appointment with the GI dr I had seen for the colonoscopy.

Now the question. He wants me to go onto the shots. Not really familiar with the names of them but I think he mentioned Humira and another one, whichever one my insurance will cover. I hate Pred (don't we all?) and can't tolerate Asacol. (gives me... the only way to describe it is fecal incontinence or as I refer to it, 'runny butt')

Aren't there other things I could try first? Immune suppressants seem so drastic to me! Kind of a last resort type thing instead of 'let's try this.' Maybe it's just freakin me out that they are giving me a drug that will shut down my immune system so if I get sick, my body won't be able to fight it off. Oh yeah, I have fistulizing crohn's and have both a perianal and a perivaginal. I'm currently on Cipro and Flagyl, I guess both for the fistulas and to prep me for the immuno.

I like the GI, very nice and takes the time to listen, but wondering if I should I get a 2nd opinion...

Thanks for any help and/or suggestions!
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 1/22/2010 8:01 PM (GMT -7)   
If you can't tolerate the ASA's such as Asacol, immune suppressants pretty much are all that's available. There are different kinds - Imuran, 6MP, methotrexate, Remicade, Humira, Cimzia, Tysabri.

Hopefully now that you have insurance you'll be able to keep it and get some decent medical care. Good luck!
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 1/22/2010 8:11 PM (GMT -7)   
wow good cd story, I've had cd since 1970 4 surgeries 3 resections last one was 1989 in canada. I have been an artist since 1992 but 2005 had to find a job for insurance i was flaring badly and couldn't afford that surgery without ins. luckily got a good paying job that I don't like that much but $28 bucks hr. I'll put up withit. table games dealer at sandiego Indian casino. but ins. is good. but got dr.s instantly like you opened upbook thru a dart. I have 2 good one's. I currently have what is called,on going medical at work. so if I callin sick they can't fire me. we have 84 disability days a year. so mine is on going, and I call in 4-6 times a month. I can't deal at a table with dia. so I call in. my art work keeps me sane and xtra 20 or 30 grand a year. but my crohns has moved to my throat and in my mouth with blisters on my tongue. pred is the only thing that eases that entocort didn't budge it. I eat papaya's everyday for digestive issues. I do have 9ft of small intestine cut out. so digesting foods is a challenge and dehydration is an issue. keep me posted good luck to you

artist guy


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 1/22/2010 8:33 PM (GMT -7)   
I was scared of being immune suppressed too, I just started imuran a month and a bit ago... I've had no side effects so far (knock on wood!) either than hair loss and seem to be tolerating it well... I haven't caught any bugs either. If it came down to it, I would rather catch a few colds or infections than deal with this DD
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone & imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/23/2010 8:24 AM (GMT -7)   
Many folks have had years of success with meds such as Imuran or 6mp. You might want to try one of those first before you go to things like Remicade or Humira. But.... Remicade is very good for fistulizing Crohns. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/23/2010 9:15 AM (GMT -7)   
I have been on 6MP for over a decade. Most of the time with other meds thrown in the mix, but the 6MP has been a constant at doses from 50mg to 100mg. During this time, my kids were little and I had the house that all the neighborhood kids came to. I was exposed to every nasty bug around. I didn't get sicker than any other mother I knew, or stay sicker longer. The 6MP just keeps my immune system in check so that my CD isn't in over drive, so to speak. I still maintain all the standard safe protocols that we should but I don't think that I am at all that much more risk that the average person.

Each doctor is different, some like to hit CD with the big guns first and others like to start with the less aggressive drugs and work their way up. It really seems to be a matter of choice for the doctors. If your doctors choices don't match your style you need to either speak up and work with them, or seek another doctor. But it seems like you have to do something to address your disease because left untreated it is wreaking havoc on your system.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 1/23/2010 11:32 AM (GMT -7)   
I've been reading this forum for a while and I've started to notice a trend.
Alot of the people who were diagnosed at young ages seem to develop fistulizing Crohn's, whereas the newly diagnosed tend to have the majority of their problems in their terminal ileum. When you're diagnosed young, I think you start to just deal with it on your own and don't feel the need to go to the doctor all the time. When you're used to being sick or slightly sick, you don't treat your illness as that big of a deal and let things go too far.
I'm in pretty much the same boat as you. I always believed I was in remission until august 2008 with my first abscess. My second abscess in september 2009 caught me without insurance and an expensive trip to the ER. I got a new job in October as well and the insurance didn't kick in until early December. I got a new GI and she ordered all these tests, colonscopy, small bowel FT, and a fistulogram. Everything was fine except a sick rectum and a skin to rectum fistula. She gave me Flagyl to start, but she wanted me on Remicade ASAP. I didn't want it at all, but she kept at it and eventually I was sold on the idea because according to her, Remicade is the only thing that combats fistulas.
...
The HMO denied my Remicade. My GI is pissed beyond belief. And now I have to go on Lialda even though no one thinks it will work.
I think that if you have more than one fistula and your HMO allows you to take Remicade, do it! Because the last thing you ever want to experience is a surgeon cutting up your vag or your butt. Once they start messing around down there...Your disease will just move somewhere else and you'll be scarred and possibly incontinent.
With your history of taking Pred and Asacol being problematic, they are more likely to give you your Remicade. Humira is out because my GI said it doesn't combat fistulas.
Good luck and let me know how it goes!
 
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 1/23/2010 2:38 PM (GMT -7)   
I am on Imuran and currently Humira. I was on Remicade for over 3 1/2 yrs and I can tell you my immune system is not compromised. Actually prior to these drugs I was plagued with sinus infections that went into respiratory infections and since being on these drugs for some reason I don't have hardly any problems. Many people take these drugs and do fine. I have had the honor of getting fistulas and Remicade took care of them. Keep in mind when trials are done on drugs if one person has some sort of reaction or problem it has to be reported as a potential side effect, it does not mean it will happen to you. I would not forego a treatment that can possibly help me without giving it a shot to see how I do. All medication come with possible side effects, read up on Tylenol, it will surprise you, lol. Good luck.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 1/23/2010 4:28 PM (GMT -7)   
Thanks for the replies. I know that CD is a serious illness and that I should treat it as such, be more proactive than reactive which is what I've always been. Being Dx'd with this at such a young age, back then there wasn't a whole lot that could be done. I remember being on high doses of pred for 3-5 months and having a naso gastric tube to give my bowels a rest. THAT was really attractive at 14! It was just such a relief to finally find out why I was so sick all the time. I know over the years, I learned to live with the the D and the pain and of course losing weight was always a plus!

Just looked up my insurance formulary and it looks like they will cover Humira with a prior auth, but not Remicade. The vaginal fistula I've had for years and very rarely get anything more than air from it unless I'm stuggling to hold D for too long. The anal one just popped up after my surgery and that one hurts! I'm not really having any CD symptoms after this last round of pred, no pain, some gas and I ALWAYS have D, or at least very loose stools. I went to see the GI because of this fistula. It hurts, it leaks, and darnIT, I WANT IT GONE!

Maybe if we petition the insurance company they will pay for the Remicade because of the fistulas. I almost feel guilty that every time I get insurance, I immediately start sending them bills for thousands of dollars! shocked I'm sure they are thrilled!

I haven't researched Lialda yet... I've only recently started looking at all the other drugs that were now available for CD. As I said, pred, while I hated it, always fixed things for me... Have to start doing some major research now. As I said, start being more proactive than reactive...
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 1/23/2010 9:42 PM (GMT -7)   
I was put on Remicade immediately after diagnosis and it gave me my life back. I can't imagine spending much more time messing with high dose steroids and other drugs just to get back to "normal" and get those fistulas healed. Remicade worked for 2.5 years and I honestly lived symptom free.

I then moved to Humira, gave me another 2 years practically symptom free.

I've never had any immune issues at all - and I have other health issues. Really, if my Crohns is under control, it's amazing how the "other" issues seem to fall into line.

Sadly, Humira is no longer an option and Cimzia didn't work so I'm on high dose steroids to keep my fever down and we can get me in for a resection.

I'd much rather still be on an immune suppressant.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/24/2010 8:33 AM (GMT -7)   
This reply is to Gypsyfp, I have had Crohns for almost 35 years and (knock on wood) have never had a fistula. I suffer with the stricturing type of Crohns, so your statement that many who have Crohns for a long time have fistulas is not correct, at least in my case and I know of a few others like me who haven't had fistulas either. Just fyi.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/24/2010 8:15 PM (GMT -7)   
39 years no fistulas
Male with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003.Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control.5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 1/24/2010 8:26 PM (GMT -7)   
Imuran 100 mg(6mp) put my Crohn's in remission once ... but raised my liver enzymes. I've just gone back on it @ 50mg and testing my liver this week. They can now do a genetic blood test to see what dose to start you at that shouldn't affect your liver.

I never got sick more because of the drug ... I was fearful, but it really just kicked out my fever and put my symptoms into submission. With that said, take care of yourself with good nutrution, hydration, etc....

Nice to see you taking care of yourself ...

Post Edited By Moderator (Nanners) : 1/25/2010 7:29:56 AM (GMT-7)

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