New GI Doc....

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Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 2/21/2009 2:37 PM (GMT -6)   
Hi All,
 
I have lurked here for a long time.  This site has been a huge help to me.  To give you a little background, I was diagnosed with Left-Sided UC in 2002.  Doc put me on colazol and that seem to make me worse.  He tried upping the dose of colazal to 12 pills a day along with Rowasa nightly and even that didn't do anything.  So I was put on those plus Prednisone.  It took almost a year on pred and I finally went into remission.  I quit taking the colazal on my own because I hated the way I felt on it.  After that, I stayed in remission until last summer.  I haven't been to a GI Doc for all those years as my colitis was in remission.  I had been off of all meds for all that time.  When I started flaring last summer, I tried to get it under control with Rowasa.  That helped but it continued to get worse.  So I saw a doc who was into treating his patients with more natural remedies.  He started me on LDN.  It worked great for 2-3 weeks and then I was back in really bad shape.  He couldn't understand why.  So I stopped taking it and started pred again.  I just got off the pred 3 weeks ago and the flare came back as soon as I stopped.  I called a new GI doc to make an appt.  They couldn't see me for 3 weeks so I decided to try the LDN again, figuring maybe I didn't give it long enough to help.  Well since I started that and Rowasa every other night, I am feeling good.  I only go 1-3 times a day, no blood, D or mucous.  I still have cramps in my side quite a bit and feel the urgency but it was such a turn around from where I was I figured the LDN was doing it's job.  Well I go to the GI doc and she tells my she has never heard of LDN and if I want to continue that for my treatment I will have to find another doc to see.  She wouldn't even consider it.  She said I need to be put on regular meds for my UC and once I reach a full remission to keep taking them on a maintenance level.  So she gave me Lialda, 4 pills every morning.  I'm really torn.  I like the LDN because there are no side effects and it's a cheap med.  Plus it seems to be working.   The Lialda is expensive and the way my insurance works, I have to pay full price at the pharmacy and then get reimbursed the 80% that they will pay.  My family thinks I need to listen to the doc and take the Lialda.  So I guess I'm asking you people here for your opinion.  Have you taken Lialda and does it really work?  How are the side effects if any?  Would it be a better option to take the LDN and Lialda?  I'm thinking maybe the Lialda will put me in full remission and hopefully then I won't have to take it anymore.  I take enough meds now for my asthma and allergies that I really don't want to keep taking more meds!!  
 
Thanks for listening and for having this site.   

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 2/21/2009 2:49 PM (GMT -6)   
     Hi Woogy!  I would take whatever made me feel good.  If the LDN works, go with it.  Personally, I don't know what LDN is.  Never heard of it.  Could you enlighten me please?
     I've been with my GI doctor since being diagnosed in 1998 while hospitalized.  We have bucked heads more than once but I feel very comfortable with him.  I fought him tooth and nail because I didn't want to go on 6MP.  I finally relented after battling with him over the issue for two years.  Well, the 6MP does NOT keep me in remission.  I have flares about once a year.  Last year was my worse and he tried talking me into Remicade.  Well, I did a lot of research on Remicade and while it does work for some people, it is NOT an option for me.
     I would love to have more info about the LDN.  I see my GI doctor next month and I will mention it to him.  I'm not too happy taking 6MP as it lowered my white count to 2.4..too low in my opinion.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 2/21/2009 6:16 PM (GMT -6)   
LDN is short for Low-Dose Naltrexone.  They just completed a study at Penn State for the use of LDN in Crohn's patients.  89% of the patients went into remission with LDN.  It is an "off label" use for many autoimmune diseases.   Here are some a great websites that gives a lot of info on this drug - http://www.lowdosenaltrexone.org/index.htm and http://www.ldners.org/.  I realize UC is not Crohn's but they are very similar and my internal doc was willing to give it a try and I figured since it doesn't have any side effects, why not.  Plus the cost of it is only $29 compared to the Lialda, which is going to run me over $500!!  I realize I will get 80% of that back from the insurance company but that is still a lot of money to fork out every month!   I guess I will try the samples the doc gave me, I think I have about of months supply.  It won't hurt to take the two together so if the Lialda gets me to a complete remission I think I will gradually take myself off of it and stay just on the LDN.   

Left-Side UC diag. 2002
Was in remission until June 2008
Been flaring since then!!  Ugh
LDN 4.5 mgs
Lialda 4 pills every AM (still deciding to take these)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5957
   Posted 2/21/2009 7:57 PM (GMT -6)   
     OK, thanks.  You are aware that doctors get kick backs from these drug companies.  That is why they push the expensive ones.  When my doctor was pushing Remicade  I told him to pay for his own cruises like I do.  He didn't have an answer for that one.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 2/21/2009 8:25 PM (GMT -6)   
I just started on LDN and if I were you, I would stick with it if that is what is working for you. It seems ridiculous to start Lialda if the LDN is helping you.
Female, Age 38
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03, Diagnosed with UC 2/03
Current Meds:
LDN - 2/17/09 1.5 mg.
Ferrex Forte
Acidophillus, Sacchromyces Boulardii, Oil of Oregano


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/22/2009 11:39 AM (GMT -6)   
The drug industry has just adopted a new code of conduct on dealings with health care practitioners that brings all those perks that doctors get to an end.

Also, know that what perks doc have received over the years...trips and such...were not related to the volume they prescribed, so there was no financial incentive to prescribe something...but no doubt it put certain products on the docs' radar if the drug company reps did their job well!

Now when it comes to infusions and services that they can charge big money for, that's another thing entirely...

So I guess I'm suggesting we not be too cynical about docs and drugs, but expect that most have our best interests in mind and trust your instincts. It's no good not to trust your doctor, so if you don't, find one you feel you can trust!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


Woogy
Regular Member


Date Joined Apr 2004
Total Posts : 125
   Posted 2/22/2009 12:49 PM (GMT -6)   
Thanks for all your replies.  I just find it odd that this was my first visit with this GI doc, in which I haven't seen a GI doc in over 5 years, and I was only in there for 10 mins!!  All she asked me was how many times I use the bathroom per day and if there was blood.  She didn't ask me anything else.  Just said, we will start you on Lialda and call me in a week to tell me if it's working, then she was gone.  When I was seeing my first GI doc, he asked me if I was having other symptoms like abdominal pain, joint pain, etc.  He also asked me how my quality of life was and if I was able to get out or did I confine myself to the house.  This GI didn't do any of that which I thought was odd since I am a new patient.  I just didn't get a good feeling from her so I may try to find another GI doc. 

Left-Side UC diag. 2002
Was in remission until June 2008
Been flaring since then!!  Ugh
LDN 4.5 mgs
Lialda 4 pills every AM (still deciding to take these)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/22/2009 5:04 PM (GMT -6)   
That's discouraging, it would be hard to just blindly follow instructions after a visit like that!
That said, Lialda is apparently a good medication that works for many.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. Doing OK, but still have some bad days. 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5165
   Posted 2/22/2009 6:21 PM (GMT -6)   
It sounds like you need to hook up with a more concerned gastro, who will help you to find the appropriate maintenance med for your UC. The main object should be to prevent repeat flares & going back on Prednisone, which can harm other parts of your body over time. Most of us worry about health insurance & the cost of our meds, so you're not alone in that respect. Hang in there! / Old Hat (nearly 30 yrs with left-sided UC; original Colazal has been my best maintenance med to-date)

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 2/22/2009 6:37 PM (GMT -6)   
Don't Lialda and Colazal have the same active ingredient? I'm surprised that someone would put you on it without hesitation when the Colazal made you feel bad.

I'd definitely trust your instincts and get a doctor who will spend more than 10 minutes with you. I think it's fine to use alternative remedies and anything you can find that helps. Just remember to get a colonoscopy every so often (not sure what the recommended time frame is... maybe 2-5 years?) so that can be sure to be monitored for pre-cancerous changes.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

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