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05-15-2014, 04:57 AM   #1
BasedJawline
 
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Stopping humira

...been going to a homeopath for over a year now and he tells me its time i go off humira which ive been on for over 4 years now. just letting you guys know that im scared. i just took my pen now (after 3 weeks vses 2) because i felt my stomach get a bit funny because im nervous about not taking it lol. so ill aim for 3 and a half weeks until my next pen and then a month after that and then ill access. thread is made more so to express my anxiety.
05-15-2014, 05:11 AM   #2
Jimena
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Please think again, with your GI. I was on Humira for abou 4 years and get in to remission, then we desided to stop it cos i was feeling so well and my bowel was healthy. I was 6months off Humira when i started to get symptoms near my anus and rectum. I got HUGE cut all the way from my anus, anal canal to my rectum and all my rectum and sigmoidcolon inflammed. I never had crohns in my rectum before. I did get fistulas too and even if i did start humira again, double doze (i still am using it) it didn't heal anything and i had to get temp colostomy to let my rectum and anus heal. Well it hasn't heal and i think i am going to have this stoma forever. I don't mind the stoma, i actually like it but long story short, i would def think about that stopping again.

Best of luck!
__________________
Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
05-15-2014, 08:12 AM   #3
BasedJawline
 
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Please think again, with your GI. I was on Humira for abou 4 years and get in to remission, then we desided to stop it cos i was feeling so well and my bowel was healthy. I was 6months off Humira when i started to get symptoms near my anus and rectum. I got HUGE cut all the way from my anus, anal canal to my rectum and all my rectum and sigmoidcolon inflammed. I never had crohns in my rectum before. I did get fistulas too and even if i did start humira again, double doze (i still am using it) it didn't heal anything and i had to get temp colostomy to let my rectum and anus heal. Well it hasn't heal and i think i am going to have this stoma forever. I don't mind the stoma, i actually like it but long story short, i would def think about that stopping again.

Best of luck!
have any other form of treatment when you went off? any symptoms before the major flare up during the 6 months off? i have an upset stomach just thinking about going off though lol. psychosomatic health. btw whats a stoma?
05-15-2014, 09:51 AM   #4
theOcean
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Please, please don't go off of Humira and if you even consider it talk to your GI before you do. Homeopaths do not know what is best for your illness. IBD cannot be controlled with diet alone, and is at most considered supplemental and you need medication. Going off of it means you will shorten your remission time and will likely flare and can do so badly and then you'll just be placed on medication all over again.

Additionally, with biologics if you stop them you can build up antibodies to them. So if you stop Humira it may not ever work for you again.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-15-2014, 10:22 AM   #5
Clash
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Also, to answer your question, if a flare goes uncontrolled you can end up with problems that may require surgery. One surgery requires pulling the bowel to an opening created on the abdomen in which your stool can pass through to a bag you connect to the stoma.

This isn't to say all surgeries end with a stoma but before stopping a medication I would make sure I knew of all the outcomes associated with that decision. I would also make sure I was as educated as I could be about Crohns disease and all complications associated with the illness. And lastly a discussion with the GI about your choices would be warranted. Some of the side effects of meds can be serious but are also rare, the results of under controlled or uncontrolled Crohns can be just as serious or more so. So before making any decision I would want to be well versed in this illness and how those decisions could affect it.
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Dx May 2014: JSpA
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PAST MEDS: remicade, oral mtx, humira
05-15-2014, 02:02 PM   #6
valleysangel92
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I have to echo the others here..

While alternative medicine can help to control some symptoms and increase relaxation and help with stress, they should never be used as an instead of for GI prescribed treatment.

To be honest, the homeopath isnt really qualified to make this kind of judgement. Only a GI is properly qualified to deal with this.

As clash says, untreated IBD means you could end up needing surgery. I don't want to scare you, but this could end up being an emergency surgery as uncontrolled crohns can result in bowel obstructions and perforations. A perforated bowel can lead to sepsis. Like I said, I'm not saying this to scare you, I just want you to be aware of the risks. If you are already feeling symptoms coming back then that's a sign that your body isn't ready to come off the medications and you need to rethink things.

At the very least please don't change anything until you have consulted your GI and got some bloods done to have a look at the over all picture and to allow you to make an informed choice about your care.
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coeliac disease/Osteopenia /Crohns/Arthritis/
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Allergic to - inflectra, aza

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05-15-2014, 02:23 PM   #7
PsychoJane
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I have never been a pro-medication myself. Though, there are MANY things to consider before doing a step like this and this needs to involve your GI. There are possibility to make choice like that with the "agreement" or "cooperation" of your gastroenterologist.

Most of the time, they won't be enthusiastic at the idea of you making the choice to stop your treatment or seeking for alternatives but certain will be willing to help you and provide you the needed screening to make sure your condition remain stable and that actions can be taken as early as possible if needed.

I HIGHLY encourage you NOT TO DO what you are doing with your Humira treament. This is not the way to do things with that type of medication. By increasing the duration between each treatment you are just stimulating your system to built up antibodies to the treatment. Doing it that way can likely lead to being unresponsive to this treatment.

I believe this choice needs to be discussed with your GI (or a receptive GI) rather than a homeopath only.
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05-15-2014, 07:06 PM   #8
Ian
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Definitely only follow the advice of your Gastro doctor when it comes to adjusting Humira and certainly don't self-medicate.

As for the advice others are giving that you shouldn't stop Humira - I understand their concerns because I had them myself when my doctor took me off it 4 months ago. The issue is you can reach a point where it's not really your decision to make. If you're well and in remission with no active disease detected through endoscopic findings then it's my understanding that biologics are usually discontinued eventually because it's seen as unnecessary - it's standard practice (I saw two doctors and both were recommending this course of action). I didn't really want to stop taking it either but they pretty much made the call for me. I expressed my concerns that I could relapse and the medication be less effective or ineffective the second time around, and they acknowledged this as a possibility but it's just the done thing - they don't want you needlessly taking a potentially dangerous drug if they think you have a good shot of staying well without it. Currently I'm still well (touch wood!), and I remain on 6MP for maintenance so they have by no means left me on nothing. I just had to have faith in them really. So far it's paying off, crossing my fingers things stay this way!

Good luck with it, I hope you can maintain your remission without Humira if the call is made to stop it. Just make sure the RIGHT person is making that decision!

Ian
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Dx Ulcerative Colitis Oct 2005 (age 19)
Dx Crohn's Colitis Feb 2010 (age 23)
Dx Indeterminate Colitis (IBD unclassified) Oct 2011 (age 25)
Dx likely Ulcerative Colitis July 2013 (age 27)

Currently taking:
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Have taken: Humira, Infliximab (Remicade), Prednisolone, Predfoam
05-15-2014, 07:13 PM   #9
Clash
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Ian I think the practice of taking you off a biologic is only practiced in certain countries. As it may apply to the original poster since he is from Australia(Dusty do you know the guidelines there?) It is not the practice in all countries. Just wanted to mention that for other readers. In the US they don't generally take you off of biologics once you reach remission.
05-15-2014, 07:55 PM   #10
theOcean
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Yeah, I was on Humira and Imuran as well and I'm absolutely not stopping them now that I'm in remission, because even if I'm healthy now, going off of it makes me more prone to falling back into flare, which is the last thing I would want. Especially given how much difficulty I had getting my illness under control in the first place. So it's definitely not the custom here to take someone off of a biologic, either.
05-15-2014, 07:58 PM   #11
Ian
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Ah ok, I did wonder about that. It does make much more sense to stay on them but as we don't pay for or even contribute towards this treatment on the NHS perhaps its not deemed economically viable to keep everyone on them indefinitely if they're well.
05-15-2014, 08:00 PM   #12
theOcean
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That makes sense, though it's detrimental to your health. Our health care here is all taken care of by the government, though medications we still have to pay for unless you're a senior in Canada. There's usually public insurance available to make sure biologics are all covered, though, so it's not supposed to ever become an issue of cost here.
05-15-2014, 08:19 PM   #13
Ian
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I may have to ask why that is the way here in the UK, out of curiosity haha. Personally I'm not too concerned because I flared horribly during my time on Humira - 4 months after it seemingly induced remission I relapsed and was in a flare for about 8 months, before going into remission again. I was on weekly Humira that whole time so I'm not even entirely sure that the drug was working as of that point. It seems very possible that I'd have relapsed and remitted regardless, for some other reason(s). Therefore the danger of it not 'working' a second time should I need it doesn't worry me TOO greatly because I'm not entirely convinced it was working for the last 2 1/2 years! But for others it could be detrimental.
05-15-2014, 08:27 PM   #14
BasedJawline
 
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Definitely only follow the advice of your Gastro doctor when it comes to adjusting Humira and certainly don't self-medicate.

As for the advice others are giving that you shouldn't stop Humira - I understand their concerns because I had them myself when my doctor took me off it 4 months ago. The issue is you can reach a point where it's not really your decision to make. If you're well and in remission with no active disease detected through endoscopic findings then it's my understanding that biologics are usually discontinued eventually because it's seen as unnecessary - it's standard practice (I saw two doctors and both were recommending this course of action). I didn't really want to stop taking it either but they pretty much made the call for me. I expressed my concerns that I could relapse and the medication be less effective or ineffective the second time around, and they acknowledged this as a possibility but it's just the done thing - they don't want you needlessly taking a potentially dangerous drug if they think you have a good shot of staying well without it. Currently I'm still well (touch wood!), and I remain on 6MP for maintenance so they have by no means left me on nothing. I just had to have faith in them really. So far it's paying off, crossing my fingers things stay this way!

Good luck with it, I hope you can maintain your remission without Humira if the call is made to stop it. Just make sure the RIGHT person is making that decision!

Ian
my gastro doctor is as closed minded as it gets. id prefer and take the risk to have a fully healthy life, crohns and medication free than accept what western medicine tells me. think about how much humira costs and then think of all the money this company is making from humira.... why would they want people to know that crohns is an environmental conditional and not a chronic one? because we are a never ending bank account.

ill let you know how i go though. i might be eating my words in a couple of months, i may not. i know a couple of people med free but my gi doctor is telling me im not like them my crohns was terrible yadidadidada but tbh my crohns never became any good until i started implementing chinese medicine/homeopathy.... so there must be something to it.
05-15-2014, 09:11 PM   #15
Lam123
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BasedJawline, I really wish you success, and I hope you don't regret your decision. I know for me, I could not last long without Humira, I would be in a flare.
What I find disturbing, is that you don't trust your GI opinion of your health. I trust my GI almost more then anybody. He's a wonderful man that works with me making decisions about my crohns. He always makes the best decision for me based on my health and my quality of life, never my bank account.

Best of luck to you!
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Crohns for 26 years
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05-16-2014, 05:34 AM   #16
Axelfl3333
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Homeopathy is quack medicine!if it was so effective wouldn't,t the drug companies be all over it like a bad rash!you,ve said yourself you don,t feel as well since altering the way you take your medication it's really high risk.a major reason people go for alternative medicine is the manner and attitude of consultants who can be arrogant gits but it's not worth risking your health because you need to tear your gi a new one,they are the hired help and can be as good or bad as any other tradesman,don,t risk your health,by all means continue with both if it keeps you happy it's only money.good luck all the best
05-16-2014, 06:50 AM   #17
Catherine
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BasedJawline

Please also read the guidelines before deciding to stop Humira.

http://www.medicareaustralia.gov.au/...gs1/crohns.jsp

Are you see a private or public GI? I would get a second opinion. I assume you are being seen by one major public GI clinics. I feel a second opinion would be better coming from a GI not associated with that hospital network.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-16-2014, 08:00 PM   #18
my little penguin
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I would strongly urge you to find a new Gi if you don't trust the Gi.
Crohn's does not get "fixed" by herbs or supplements .
As far as stopping humira in other countries .
There are reports were the govt figure out the total cost - not the health of individual patient .


4.2.10 Following comments from consultees on the assumptions about relapse rates based on the model by Silverstein et al., the Assessment Group performed sensitivity analyses using various probabilities of relapsing from the remission state. This indicated that as the relapse rate increased, induction treatment became less cost effective, and maintenance treatment became more cost effective. When the probability of relapse was increased to 0.3 (a 51 times increase) the ICER for infliximab induction treatment in severe disease compared with standard care was £153,136 per QALY gained. For infliximab maintenance treatment compared with standard care the ICER was £43,744 per QALY gained. Using the same assumptions, maintenance treatment with adalimumab dominated standard care, and the ICER for adalimumab maintenance treatment compared with induction treatment was £37,007 per QALY gained.
4.2.11 The Assessment Group presented a threshold analysis for the use of infliximab in children and young people. The Assessment Group extrapolated the utilities, effectiveness and non-drug costs from the adult analyses to children. Only the drug costs associated with infliximab that were because of the lower body weight were changed. The Assessment Group carried out analyses at body weights of 20–40kg and 40–60kg. If it was assumed that infliximab improved a child’s health to ‘full’ (a full QALY) the ICER for maintenance treatment in severe disease was £193,328 per QALY gained. For induction treatment, infliximab dominated standard care in children with severe Crohn’s disease for all body weights.


From:
http://www.nice.org.uk/guidance/inde...rticle&o=46234
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05-18-2014, 07:47 AM   #19
Samboi
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I'm yet to see either a homeopath or naturopath in an emergency department or perform a surgical procedure. And until I do - I would be strongly disinclined to accept any medical advice from them.
If you are disatisfied with your GI - then consider getting a referral from your GP to a GI that better meets your needs.
And you're an Australian - it is immaterial how much Humira costs as it is on the PBS and you only pay $36 for it. If you start to flare again once you have stopped taking it, the cost of the hospital admission will be a greater burden on the taxpayer than continuing to take it and remaining in remission. Not to mention it will be harder and more expensive to get you in remission as you may have developed antibodies to the Humira - eliminating this option to get you back in to remission.
It's a very big gamble.
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05-18-2014, 08:50 AM   #20
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I took myself off of Humira about 3 months ago. I had brought it up with my doctor, and he said I should stay on it. The thing was, when I first started taking Humira, it was soooo awesome. There was a noticeable difference between the day before a shot and the day after. But after a while, I couldn't tell the difference.

I had been taking lots of herbs and supplements and maintaining an extremely strict auto-immune paleo diet mixed up with SCD. I basically threw away all the food in my house but a few things I thought were safe and only ate those and then slowly week by week would add a new food. It was extremely difficult, but it was the sure fire way to find out what was triggering me.

I found a much bigger correlation between my diet then Humira in my health, so I stopped. After stopping Humira, I was convinced there wasn't going to be a difference, but I did notice my system was about 10-15% worse off. On top of that, I am now easier to flare and longer to heal and... am sensitive to a few more foods. It turns out after all that the Humira was having somewhat of a preventative effect after all. Still... I am doing good enough without that I haven't felt the need to go back on.

For me, It was all dependent upon knowing if I can control my disease or not. I have been extremely careful and detailed in watching my condition, journaling, and correlating my condition to triggers, not just food. I monitor pain, frequency of stools, type of stools, quality of digestion, blood and so on. I felt like I had and do have a pretty good grasp of my body, but still was surprised a bit by going off Humira.

I am by no means anti-Humira. I think the drug is wonderful, but I also do believe that if you don't need it, you shouldn't be taking it. As others have reflected, this is really a conversation between you and your GI, not you and your Homeopath, not you and people on the board.

I also don't think you should completely regard your Homeopaths information. People on here say bad things about them, but I think they have lots of information doctors don't have, some of which can be good. I will say the same thing about doctors too, in that they certainly know many things that Homeopaths don't. It is important to talk to both and see if you can understand what they are saying. Neither Homeopaths nor GI's have a monopoly on knowledge and ways to treat patients.
05-19-2014, 06:47 AM   #21
MikeinBklyn
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"I would strongly urge you to find a new Gi if you don't trust the Gi.
Crohn's does not get "fixed" by herbs or supplements .
As far as stopping humira in other countries .
There are reports were the govt figure out the total cost - not the health of individual patient"

Listen to my little penguin.

Good Luck
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06-17-2014, 08:33 AM   #22
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I have been off Humira for 4 months. I have been using betaine hcl, digestive enzymes, vitamin D, juicing red cabbage juice, and taking lots and lots of fermented foods and probiotics. The most important thing is being on a strict auto-immune paleo/scd/FODMAPS diet tailored to me.

At the end of this 4 months I decided to go back to my GI and talk with him. While I have been doing okay, my BMs went from 1-2 a day to 2-3 a day. Not that big of a deal, but still noticable. What was a bigger deal is I went from almost no pain to some pain, sometimes even bad. I also had some problems with bleeding. After talking with my doctor, we decided to start Humira again.

I really would like to live drug free, but I am by no means anti-drug. If Humira can put me into remission and keep me there, it very well might save me problems down the line like strictures that might not otherwise happen. It has only been one day since I took the shot, but I do feel like there was less pain today and better digestion.

I just wanted to report back.
06-21-2014, 10:38 PM   #23
Miss Underestimated
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You cannot control it yourself. But some of us have to find out our own way.

As far as the cost analysis: A biologic may work for you, but if it doesn't work for everyone, you can't get it either.
02-17-2015, 10:42 PM   #24
BasedJawline
 
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Just checking back in on the thread I made. Thanks for your responses guys. Longest I stretched out for not using humira was 4 weeks 2 times in a row until I felt a bit of constant stomach pain/mild bleeding. So I figured I need to stay on my humira for now though I definitely don't think it's the best treatment available or treating the cause in the slightest. I feel I have ultimately dulled my response to humira but I am still living symptom free with the help of TCM though I think I am somewhat reliant on that now too.

So yeh, I have went back to my routes which got me into remission into the first place with chinese medicine and after investing a lot of my time and money in homeopathy I came to my original conclusion that it was BS but I wanted to give it a chance after a few people sweared by it.

Also anyone know of any gastroenterologists in Melbourne Australia that live with Crohn's themselves. I'm sick of the same old closed minded thinking.

Conclusion:
Im happy with taking humira every 3 weeks for now and hopefully a MAP cure will come soon.
02-17-2015, 10:50 PM   #25
BasedJawline
 
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I have been off Humira for 4 months. I have been using betaine hcl, digestive enzymes, vitamin D, juicing red cabbage juice, and taking lots and lots of fermented foods and probiotics. The most important thing is being on a strict auto-immune paleo/scd/FODMAPS diet tailored to me.

At the end of this 4 months I decided to go back to my GI and talk with him. While I have been doing okay, my BMs went from 1-2 a day to 2-3 a day. Not that big of a deal, but still noticable. What was a bigger deal is I went from almost no pain to some pain, sometimes even bad. I also had some problems with bleeding. After talking with my doctor, we decided to start Humira again.

I really would like to live drug free, but I am by no means anti-drug. If Humira can put me into remission and keep me there, it very well might save me problems down the line like strictures that might not otherwise happen. It has only been one day since I took the shot, but I do feel like there was less pain today and better digestion.

I just wanted to report back.
You experienced a dulled response since going back on? What are your symptoms if any atm?
02-17-2015, 10:57 PM   #26
BasedJawline
 
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"I would strongly urge you to find a new Gi if you don't trust the Gi.
Crohn's does not get "fixed" by herbs or supplements .
As far as stopping humira in other countries .
There are reports were the govt figure out the total cost - not the health of individual patient"

Listen to my little penguin.

Good Luck
I agree crohn's does not get fixed by herbs or supplements but it also does not get fixed by humira or any of that other shit they prescribe. So you have to ask yourself, would you rather treat yourself with something that brings with it a host of many other problems or would you rather treat yourself with something that brings 0 side effects outside of cost.

Ultimately I think a combination of the 2 is necessary but one thing is for sure and that is that humira does not fix the problem. There is significant proof now and has been for years(but your Gi wont tell you that) that crohn's isn't even an autoimmune disease but instead a pathogen.
04-03-2015, 04:02 AM   #27
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After 1year I asked my GI about going off Humira ( beause the Drug information pamphlet with the side effects and lab study results recommends it ) , anyhow my GI was too scared to change a thing. But im going to attempt again at the 2 year mark. I was able to wean myself off of Lialda , and to my surprise it helped reduce my bowl movements some , firmed up my stools. I had some intermitant mild stomach discomfort during the weaning process but nothing major. The Humira side effects - Excema and weight gain, are not too bad, but im acutely aware of the major side effets I'm gambling against by staying on it.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 1.5 years - remission
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