Taking myself OFF 6MP. PLEASE respond if possible.

I have a diagnosis of Crohn's and have recently started flaring after a little under 2 years on 6MP. My doctor wants to put me on Remicade if the increased dose of 6MP (they recently increased my does to 100mg) does not start working soon. I have just recently decided that I'm not comfortable taking either and have decided to take myself off of the 6MP and not start the Remicade. I know it's bad, but I haven't told my doctor that I'm not taking 6MP anymore (I stopped taking in about a week ago). I just cannot bring myself to take it after I started researching it and found out about the increased risk of Hepatosplenic T-Cell Lymphoma.....it sounds dramatic but I literally cannot bring myself to take it again. And of course, I'm paranoid that I already have HSTCL already which is not helping my stress. I'm going to get a new doctor because I clearly can't meet with a doctor who I am afraid to tell I went off my medicine....

So here are my questions and I am literally begging for feedback because I am so unsure of what to do. 1) Does anyone know of any good GI doctors in the Nothern Virgina/DC metro area who would be open to working with someone who will not take an immunosuppressant or a biologic? and 2) has anyone else decided against taking these drugs and had success with other alternatives?

Not sure how to answer or what advice to give.

If you are flaring, you really should STAY ON medication until you are able to either consult with a new doctor, ot talk to your current one. You could be ultimately leading yourself into a visit in the hospital but not taking your meds. Trust me, been there done that!

As far as the risk of cancers, yes, it is there, but it is SMALL!!! The benefit of taking medicines generally outweighs the risks associated with it.....you can have health with a slightly increased chance of developing some type of cancer, or you can be ill, in/out of hospitals, undergo surgery, or possibly even DIE - much quicker than if you are on medications your doctor prescribed.

I don't mean to sound dramatic, but I want to you really think this decision over.

Illness/cancer can strike ANYONE - a friend/co-worker just revealed this morning his wife was diagnosed with leukemia on Monday - no apparent risk factors.....it can happen....

Just don't end up doing more damage by not treating yourself. Sometimes reading too much on the internet can do more harm than 'ignorance' - not reading everything that is out there.

You should definitely stay on your meds!! never stop taking them unless your doctor has told you otherwise. I did stop taking aza at one point but I'm never doing that again as it landed me in hospital. I learnt my lesson from that even though A few months back I was taken to hospital by ambulance after I took azathioprine and collapsed, so even when that happened I still carry on taking it. I would recommended that you don't stop taking your meds unless your doctor has said you can.

Try not to worry about lymphoma, your risk is 8 in 10,000. The risk of dying in a car accident is 1 in 250. The risk untreated crohn's will make your life miserable, those are pretty high.


I am not trying to make your fears seem unimportant, I had those same fears when my son was diagnosed and he was put on 6mp. But you should weigh the risks. Keep your bowel healthy enough so that someday when new meds or a cure are found you are able to enjoy them.

And have the conversation with your Dr. If you decide to go off your meds it is really important your dr knows so they can monitor your condition differently.

((((Hugs)))))) I hope you find a drug that you are comfortable with.

I spoke with my doctor about the side effects of Humira ( a biologic) and the cancer risk associated with it. His response was the immflamation , if left untreated, can be more harmful in the long run. You may never get cancer but you surely will get sicker leaving your Crohn's untreated. Once it was put to me that way, it was an easier decision to start the biologics.

After a month on Humira, I am starting to feel like a new person! Please keep an open mind!

Michelle222 you really need to talk to your doctor about this. Help them help you by keeping them informed. Don't assume that they are going to refuse to treat you because you aren't comfortable with certain medications. Talk to them about your concerns and suggest alternatives to them like Enteral Nutrition/EN, Low Dose Naltrexone/LDN or Medical Marijuana. Ask them why they don't prescribe these for your situation. Maybe their explanation will help you understand the disease better and how its affecting you personally. Who knows, maybe they would be able to give those a shot and if they work then great but if they don't then maybe after experiencing something different, you may be willing to try something else like a biologic (Remicade, Humira or Cimzia) or a different immune suppressant (like Methotrexate). Also suggest adding Allopurinol to a low dose of 6MP (Allopurinol helps to make the 6MP less toxic http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/).

Keep in mind though that the longer you allow inflammation to go untreated, the more problems you could face in the future like resections, short bowel syndrome, a stoma, abscesses, fistulas, vitamin and mineral deficiencies (may require shots and infusions) and even death (although less common this day and age because of modern medicine). This isn't meant to scare, this is just what Crohn's can do and a lot more so be careful.

I hope you find something that works for you.

Stay on your meds!!! I had the same issue and stopped my meds on my own due to depression. A few months went by and I ended up in the hospital for almost 6 months and had surgery which included a Cholecystectomy, Colectomy With Diverting Loop Ileostomy, Appendectomy, and Closure Of Ileostomy/loop. Wait until your flare up is over and consult with your doc. If you are not happy with care I would recommend looking for a new doc, but stay on your meds until the new doc has answers for you. I hope this helps. Take care.

Hey michelle222, I was diagnosed this summer so still relatively new to this whole crohn's disease business, but I can definitely relate to your situation. I went to the ER in June with what I thought was a burst appendix or kidney stones, and ended up being hospitalized for 4 days and diagnosed with crohn's. They gave me Asacol HD, Percocets, and Promethizine. This combo got me very constipated and I was constantly feeling nauseous. I lost a lot of weight very very quickly. Finally got to see my GI and he scheduled me for a colonoscopy 24 hours later. After the colonoscopy I started Entocort which def helped put symptoms at bay, but did cause me to have several sinus infections, a curious skin infection, headaches pretty much everyday, and urinary retention. So as it became time to ween off the Entocort (its a steroid so you cant take it forever) my doc suggested 6-mp, said it was mostly safe with a few extremely rarely observed but possibly serious side effects, and that if he were me then he would take that. He said my other option was biologics, or going off meds completely and seeing if my semi-remission held up. So i went and filled my 6-mp prescription, but before taking it I decided to read up on the drug. Then I find out it can cause lymphoma, serious infections, hair loss, sensitive or bloody gums, headaches, diarrhea, blood in urine, pancreatitis, jaundice, etc. So I report back to my GI that I'm not taking it. I did a lot of research on LDN and brought it to my next appointment and my GI doc reluctantly wrote me a prescription saying that he didn't think it would work but he would rather me take that than nothing at all. So I have now tapered off the Entocort and am taking LDN. I think the LDN is helping, but I'm not 100% sure. I started using marijuana everyday while on the Entocort and I believe that this is helping more than anything. I also use very high doses of probiotics as they seem to help tremendously also.

While I do think its a good idea to consult with your doctors about your meds,its not always easy and medical professionals are not usually very receptive to patients coming up with their own disease care. I still haven't told my doc that I'm using marijuana because I feel like after I tell him that he's going to put me into that "drug seeking behavior" category and won't take me seriously. But it really is amazing, I have an appetite again. I am finally gaining some of my weight back. I really wish I lived in a medical state or just had a good black market source for Rick Simpson Oil(RSO) or hemp oil. Type in Rick Simpson Oil Crohn's on google. After seeing how much good "street" cannabis helps my crohn's I really think the highly concentrated RSO could provide a lasting remission. And the best probiotics I have found are inner-eco coconut water kefir and VSL#3.

I def understand not wanting to take 6-mp because I refuse to touch the stuff. The chemicals that modern medicine is throwing at sick people are terribly scary in my opinion. I wish you the best of luck and I hope you find relief soon. I also find that when I'm having symptoms, going to a completely liquid allergen free diet helps calm things down.

Jennifer please stay on your medication,bin the leaflets that are in the box they are a cover your backside exercise,avoid doctor google,good news is no news and just remember you,ll be getting regular blood work done just like the rest of us which will pick up the slim chance of anything going astray.i like you do not enjoy taking 28 tablets a day but the help give me a fairly normal life.take them!good luck

Honestly 6mp is the best thing to take with remicade. Two years ago when I was diagnosed the first medicine I took was remicade and 6mp and I felt really really good. I was doing so good that I went into remission. I felt like I didnt have crohns. Since, I was doing so good, the doctor took me of 6mp and gave mp methotrexate. That was probabaly the worst decision the doctor ever made for me. I ended up doing bad with it. I felt so miserable when I was on it. I was taken of it in July, and now my remicade dosnt work well anymore. I have antibodies. Even though there is that chance of lymphoma, it is so small. I strongly reccomend 6mp and remicade. My brother who is two years younger then me, got diagnosed at the same time. He is still taking remicade and 6mp together and is doing spectacular. Good lick and I wish you the best.

Marijuana helps with managing symptoms. It does nothing for actually treating your disease. In fact, be extra vigilant in having your Dr. monitor your disease if you choose to use marijuana. It can cover up how bad you are actually feeling.

There are lots of people on the forum who have taken 6mp for years. People who have actually taken the drug will have valuable experience to help give advice.

It is also a drug you can always stop taking if you find it doesn't work for you. GI's have a ton of experience with this disease and see all sorts of choices people make. Believe them when they give you a recommendation.

Thank you all so much for your responses. I think I am going to go off the 6MP but I do understand that I need to let my doctor know. I tried to talk to her about it, but I feel like she doesn't listen to me at all....I am in the process of finding a new GI doctor, I think it's really important to trust your doctor with this illness.

I sometimes feel like this disease make me crazy, always worrying I've given myself some sort of cancer due to my medication choices. It's really helpful to hear from other people.

Have you had your 6mp levels checked?

Answering 2) I understand your concern with telling your doctor you have gone off your meds. I am currently in the same situation. After 2yrs of being relatively well on Sulphsalazine, it stopped working. My doctor added Pred and Azathioprine. For the next few months, as soon as the Pred wore off, I would flare again. The next step was Remicade. My doctor said Sulphsalazine is safe, but Aza and Remicade came with risks. I felt so sick, and the thought of possible side effects made me feel like the outlook was hopeless. I was not responding to anything but Pred which is not a long term option (weight loss, psoriasis, eurythma nudosis and painful sacroiliitis).
Throughout all this I was reading extensively on possible alternative treatments (diet, MAP antibiotics etc) and came across the Auto Immune Protocol diet. I see you have removed gluten from your diet, and really hope you have had some success from this. Although food triggers are different for everyone, AIP has changed my life. I now feel better than I have in over 5 yrs (took nearly 3 yrs to be dxn). I am in remission and for the first time in 5yrs my bloods are completely normal. My doctor was not interested in discussing diet, except for low residue, low fibre, as 'diet as a cause' is not proven, and insisted I stay on my current meds for another year. I understand why, but was experiencing a great deal of stress taking my meds. Although I would never recommend anyone to make such a decision, I decided to stop all medication, and so far so good. In September I stopped Aza and October I stopped Sulpha. I feel I understand the risks and would not refuse to go back on medication if my symptoms returned, but feel very strongly that increasing doses with no success is not the answer for me. I will tell my doctor when I see him next. Although he may not agree with my decision, it's ultimately mine to make and if successful may be a positive step towards treating the cause and not the symptoms of this awful disease.


2011 diagnosed Extensive mod-severe Crohn's - Sulfasalazine 400mg

March 2013 first severe flare since dxn. New dxn Sacroiliitis. 400mg Sulpha, 50mg Azathioprine. 50mg Pred

May, then July 2013 flare. Severe sacroiliitis. 400mg Sulpha, 75mg Aza. 50mg Pred. Glutamine. Vit D. Curcumin.

August started Auto Immune Protocol (after 6weeks slowly added rice, hard cheese and lots of yoghurt).
Currently no meds. In remission.
No active Crohn's (cat scan). First blood test in 5yrs where all levels normal. No Sacroiliitis, psoriasis, euyrethma nudosis.

Catherine-Yes, I recently had my levels checked. I've been on 75mg for awhile and then about a month ago they moved me up to 100mg after a flare. At that time when they tested my blood my 6MP was not at a therapeutic level but 2 of my liver enzymes were "slightly elevated". I got my blood tested last week and I guess my Alkaline Phosphatase enzyme is still "slightly" elevated (I think its in the 140s when the cutoff is supposed to be like 120 something), but the rest are within normal limits I guess. I am now in the therapeutic range for 6MP when I guess I wasn't before. 100mg seems really high though. I have decided, per some of the advice on the forum, to let my doctor know that I am stopping 6MP as it makes no sense to hide things from your doctor. I am hoping that I can possibly get on Entocort (which worked fairly well for me before) until I meet with a clinical nutritionist in January to discuss dietary changes to control my disease. I don't want to necessarily risk getting worse by taking no meds at all....who knows if my GI will agree to the Entocort though....we don't seem to see eye to eye on many things.

Thanks again to everyone who responded. I really appreciate the support.

I'm glad you're letting your doctor know. Hopefully they will be understanding about your views and situation.

Just wanted to add Michelle that when my son originally started 6mp the Dr. explained to us that the dose varies mainly because how quickly or how well someone metabolizes the drug. So people who are on a higher dose aren't necessarily exposed to more of the medication. Unless they lack the enzyme to metabolize it, which they test you for before you start taking it.

I also viewed putting these drugs into my sons body as something awful too at first. But, the difference it has made has been miraculous. Before diagnosis he lost weight for 2 years in a row at his check ups. Only about 2 or 3 pounds but a boy his age should have been gaining 12 pounds per year. He also just about stopped growing. The year he was diagnosed he only grew a 1/2 inch. He had always grown at least 3 inches per year before that. So, as bad as the drugs are they have to be better than the disease was untreated. Since diagnosis 2 years ago he has gained 55 pounds and grown 8 inches. And I believe I could only really see this difference because he was a kid and was still supposed to be growing. His symptoms were never that bad, and his disease was very subtle up until about a week before he was diagnosed. Now that he is well, I see that he wasn't feeling good but we all got use to this new normal.

I am only writing this because we have lived the experience of what this disease is when you are on medication. I completely understand your feelings. I cried the day I gave him his first dose, thinking it would be the last day he was med free in his life. But now I am beyond grateful that he has those meds available.

I think you are taking a great approach, gathering more information and talking to your Dr and others who have experienced the choices of meds and no meds. I am sure you will find something that is right for you. The truth is there are no easy choices with this disease. ((((Hugs))))

johnnysmom- about medical marijuana, not actually true that it does nothing but mask symptoms, in high enough doses, cannabinoids have proven to reverse inflammation and based on newer studies appear to have novel anti-TNF properties. MMJ also slows bowel motility and modulation of CB2 receptors appears to prevent the migration of T cells to the cite of inflammation ie hemp oil is more than just pain relief, appetite stimulation, and improved mood. Current studies are showing miraculous results with treating cancer as well. I can be very painfully constipated, use cannabis, and within minutes things "get moving" (which def shows that it helps with inflammation as its the inflammation that causes my C). go to pubmed and type in cannabinoids...also check out phoenixtears.ca

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3423254/--Cannabinoids mediate opposing effects on inflammation-induced intestinal permeability

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3804300/--Immunoactive effects of cannabinoids: considerations for the therapeutic use of cannabinoid receptor agonists and antagonists

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417459/ --Inhibitoryeffect of cannabichromene on inflammation-induced hypermotility in mice

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165957/?report=classic--These results are relevant to the analgesic, anti-inflammatory and anti-cancer effects of cannabinoids and Cannabis extracts.

Recent studies demonstrated that administration of THC into mice triggered marked apoptosis in T cells and dendritic cells, resulting in immunosuppression. In addition, several studies showed that cannabinoids downregulate cytokine and chemokine production and, in some models, upregulate T-regulatory cells (Tregs) as a mechanism to suppress inflammatory responses. The endocannabinoid system is also involved in immunoregulation. For example, administration of endocannabinoids or use of inhibitors of enzymes that break down the endocannabinoids, led to immunosuppression and recovery from immune-mediated injury to organs such as the liver. Manipulation of endocannabinoids and/or use of exogenous cannabinoids in vivo can constitute a potent treatment modality against inflammatory disorders. This review will focus on the potential use of cannabinoids as a new class of anti-inflammatory agents against a number of inflammatory and autoimmune diseases that are primarily triggered by activated T cells or other cellular immune components.

I have read some studies on Medical marijuana but I haven't seen anything that has changed my mind on the subject. Ask a GI about it and get their thoughts. I am not saying it can't be helpful but I don't know of any GI doctors promoting the use of marijuana to treat crohn's disease without the use of other meds. It would be great if there was something that treated crohn's that was free and I could grow right in my back yard. But, at this point I am not convinced.

Johnnysmom said:

I have read some studies on Medical marijuana but I haven't seen anything that has changed my mind on the subject. Ask a GI about it and get their thoughts. I am not saying it can't be helpful but I don't know of any GI doctors promoting the use of marijuana to treat crohn's disease without the use of other meds. It would be great if there was something that treated crohn's that was free and I could grow right in my back yard. But, at this point I am not convinced.

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I am curious. What are the general opinions of GI's, Crohns and Med. marijuana? Are they generally against it? I don't live in a state where it's legal for medical purposes, so it's not an option for me. But does one have to be in a certain state of pain to get a Dr's order?

LodgeLady,

I know there is a special thread for marijuana and crohn's on the forum. I am sure you could find a lot of information there.

My dad was offered marijuana for pain and nausea for his colon cancer. He wasn't in a lot of pain but was mostly feeling discomfort and nausea. That was in Michigan, and I am sure each state has it's own laws.

My son's GI and my GI don't think much of it unless it is used in conjunction with medication and is mainly for discomfort and nausea. I would be curious to know what most people's GI's recommend. It would be a great question for the marijuana thread.

Any doc is going to tell you that they don't recommend it because studies on medical marijuana for anything besides pain and nausea are in their infancy because the federal government has deemed that marijuana has no medical uses and is therefore a schedule 1 drug. GI doctors and really any doctor out there is being told by the greater medical community which meds work and which to prescribe. The greater medical community is quite heavily influenced by Big Pharma and they are the #1 opponent of medical marijuana these days. This is really more a discussion for the MMJ thread, but I do think that arguing against MMJ as a possible stand alone crohn's treatment by saying that GI doctors don't recommend it is kind of like saying its bad to buy gas at Exxon stations because BP execs said its not good for your car. Bet you I know more about current medical marijuana research than most doctors in the US.

LodgeLady-You do not have to be in a certain amount of pain to get a doc's prescription in a medical state (each state has its laws set up a bit differently). For the most part, you just have to have a condition that is on the list of those that could possibly benefit from cannabis use. Crohn's disease is on that list in every medical state as far as I know.

Just an update, went to get a second opinion and the other GI doctor is willing to be me on a much less severe medication (asacol) in conjunction with probiotics and a diet (meeting with a Clinical Nutritionist specializing in Crohn's the first week in January). The condition was that I need to check in with him every month for blood tests and to monitor my disease....how fun....I am praying that this combo works and I don't have to go back to weighing which drug is least likely to give me horrible side effects. I totally understand that the side effects of these drugs are very rare but they give me so much anxiety I almost feel like I flare more due to all the stress.

Anyway, thanks everyone for the feedback.