No appetite at all will 6 mp help

[Tikell]

Hey everyone,
I've have been suffering with IBD (inflammation of the Jejunum but not the Ileum) for 24 years and Ankylosing Spondylitis for about 35 years. My main symptom is a severe lack of appetite and a deep pain in my right lower quadrant. Then of course there is the loose, frequent bowel movements. I have tried everything, literally everything to try and cure myself. Diets, helminthic therapy, LDN, drugs, medical marijuana. I have been on Humira and Enbrel on and off for about 15 years. Most recently on the humira every 10 days. The humira along with wellburtrin (has some anti-inflammatory properties) seemed to help a bit. I was finally able to get a wee bit of an appetite at night using the humira, wellbutrin and marijuan. Anyhow, over the years I have had many sinus infections, developed complex regional pain symdrome and most recently a bad case of shingles. I don't know if the humira was responsible for all this but I felt like I better go off of it. I went from being able to eat a little bit to NO appetite at all. I feel as if I am dying. I am curious about 6-mp and was wondering if anyone has had appetite issues and if 6-mp helped them restore their appetite. While I had shingles my doc put me on prednisone 30 mg. a day and wow.....I was able to eat. It was fantastic. I actually looked forward to eatting. BUT, one can't stay on that forever and I have been on and off of it so much in my life. So--I am stuck and don't know what to do. I need to eat to live and desperately want an appetite. BEGGING FOR HELP.

 

[FrozenGirl]

I can't say I have heard of 6mp helping appetite. That said if it helps disease activity and you feel better you may have more of an appetite. Prednisone is well known for its hunger inducing 'prednisone munchies'.

 

[BlindLogic]

I am being successfully maintained in remission (3 years) on azathioprine (which is metabolized into 6MP) for my Crohns pancolitis (Crohns throughout the colon). My first and main symptom during my initial flare was loss of appetite and this led to a gradual weight loss over 6 months from 165 to 105 pounds. (I'm an average-height middle-aged male). The weight loss accelerated when frequent liquid D (15/day) was added to the increasingly severe appetite loss. I was so worried that I was going to end up in the hospital on a glucose infusion, that I ordered powdered glucose (known as dextrose in the food industry and body-building supplement industry) from Amazon to add some emergency calories to my starvation diet. (Common sugar is 50% glucose and 50% fructose, but the fructose is hard to digest and can add to the D .) (I first tried the liquid diet supplements (Ensure) but I didn't tolerate them any better than solid food.)

I was finally diagnosed and put on a course of prednisone which after about 4 weeks gave me the most intense psychedelic appetite of my life. So intense, that I became mesmerized watching cooking shows on television and I even looked up YouTube videos on how to butcher a deer (and I'm not a hunter). My appetite and weight are now back to normal on azathioprine and so I can recommend that you try 6MP/aza although it will take about 3 months for it to fully start working. If you have some initial side effects (such as fatigue or headaches) then I suggest that you try splitting your dose among each of your meals, or alternatively you could try starting out at a lower dose and building up the dose every couple of weeks. Good luck.

 

[24601]

Increased appetite isn't, I don't believe, a side effect of 6mp ever but any med that gets your disease under control can (and hopefully would) increase your appetite.

If you've had to stop Humira it does sound like replacing it with another Crohn's med is likely to be sensible. 6mp doesn't usually get to therapeutic levels for about 12 weeks though so isn't likely to give you a fast fix. Have you discussed a new med with your GI?

I've been there with the whole unable to eat thing and getting weaker and weaker and it is important to take action to get better nutrition asap to halt that decline. I would think that trying nutritional supplements like Ensure/Fortisip/Boost to get more calories in the meantime would be good until you can get a new med started and the disease under control.

 

[Tikell]

Thanks so much for your responses. Was supposed to pick up my 6-MP today at the pharmacy but chickened out. So afraid to try this scary drug. I've tried so many other drugs throughout the years...Asacol, Pentasa, entocort, and different sulfasalazine products and all to no avail. Basically, prednisones seems to work the best and is one of the worst for you. Saw my Gastro today and he is referring me to a colleague at Stanford because of the location of my inflammation....located in the jejunum. But in the meantime 6-MP is recommended. I am hoping the 6-MP will reduce inflammation and give me an appetite. So tired of drinking juices and protein shakes and green drinks. Just got to get the courage to take the drug. Don't know why I was more willing to take the Humira all these years. I guess the thought of possibly losing my hair and feeling sick all the time and reading all the scary comments about 6-MP has me shivering in my boots. Thank you for all your comments.

 

[24601]

For what it's worth I say go for it You've been through lots already, you can handle 6mp. I know it doesn't always feel like that, because the cumulative effect of trying all these meds and being sick for all these years is draining, but as someone with stricturing jejunoileitis I speak from experience when I say leaving the disease undertreated is worse.

I do very much understand the anxiety over side effects but what I experienced and often see people experience is that you either take it and have bad side effects early on - in which case you stop, the side effects stop and you move onto the next med - or the side effects are not that bad, in which case it stands a good chance of being beneficial to you overall and obviously that's a good thing Some people truly do well on 6mp and occasionally people have some hair thinning but I'd say you may be at risk of that from malnutrition too so it is a balance of risks.

Have you ever tried Exclusive Enteral Nutrition? It sound like you might be almost all liquid diet anyway but by swapping all your drinks for a formula (Ensure/Fortisip/Peptamen/Elemental 028/Modulen) you will get the proven therapeutic benefit of those diets. EEN is similarly as effective and fast acting as steroids and would be a good bridging therapy until the 6mp kicks in - if you tolerate it, which you don't know until you take the pills

It's great that you've got a referral to another doctor - that sounds promising.

 

[Tikell]

Hi there,

Thank you so much for your kind words. So, do you too have inflammation of the jejunum? Have you experienced a loss of appetite? I am interested in the Exclusive Enteral Nutrition. I will do some research on the internet about it. When I am not putting my food in the vitamix then I am force feeding often. Every now and then I will have a bit of an appetite and I try to retrace my steps to figure out what I did differently. It is like a big puzzle that I have been trying to put together for over 20 years and has only gotten progressively worse. Is the EEN a prescription or sold over the counter? Does it have steroids in it? Sorry for asking all these questions.....hope it is okay?
I was doing some research and have read that it is best to get a pneumonia shot, whopping cough vaccine, shingles and flu shot before starting the 6-mp? Since I just got over shingles I think it might be a good idea. Also, because I have Ankylosing Spondylitis which has caused restricted chest expansion, I am prone to lung congestion when I get a cold.....sooo.....geezzz, one thing leads to another. Sometimes, I just can't believe that this is my life. Have to work really hard on focusing on the blessings.

 

[24601]

Hi!

Yes, I have throughout most of my time since diagnosis had inflammation throughout a lot of my jejunum and ileum - and for me this very easily results in scar tissue and strictures so I've had quite a lot of surgery to remove those narrowings.

For me most of the loss of appetite has resulted from the strictures - which caused severe pain, abdominal distension, nausea and vomiting. So not conducive to appetite!

Our responses are all different though and others have certainly experienced loss of appetite from inflammation. It certainly seems like getting your inflammation under control should be the first thing to try - and of course reducing inflammation should be a priority anyway.

EEN just refers to drinking a liquid formula without food so it can be Ensure or Boost which are certainly available without prescription or a more specialized formula like Peptamen or Elemental 028 - I'm not sure if these ones would require a prescription but in general I think it can be much cheaper to get your doctor to prescribe it. I'm in the UK where a prescription cuts the cost hugely. For most all the formulas are equally effective.

There are no steroids in any of the formulas and the exact action by which they work is as yet not entirely clear. Some hypothesize that they act to modify the bacteria in the gut in such a way to give an anti-inflammatory effect. What's clear from studies of EEN versus TPN is that having these easily digestible molecules passing over the bowel surface is better for reducing inflammation than complete bowel rest.

I think it might be worth trying since you are struggling to get enough nutrition and it may well help with that - even if you are in the 30% of people it doesn't get into remission. It's always a risk with steroids too that they won't help and you get the side effects.

Definitely talk to your doctor about the vaccines. It's not easy balancing all those needs! Sounds like they might be extra important for you though so best to get them in quick so you can try the 6mp if you decide to.

I can certainly relate on having times where I'm shocked that this is what my life has become. I do think focusing on the good things and anything you may feel fortunate about does help. I hope you find it does for you too :ghug:

 

[Lady Organic]

purinethol does cause me loss of appetite, mild nausea and general fatigue for about 3 weeks at the beginning of treatment. This is expected with this treatment, so do not panick if you try it and feel bad in the first weeks. All these symptoms usually resume rapidly.

 

[Tikell]

Hi lady organic,
Thanks for the info. Is purinethol the same as 6 mp? Have you maintained a remission on the purinethol?

 

[Lady Organic]

yes, purinethol, can also be named 6-mp and mercaptopurine. It maintained me in perfect remission at 75mg/day as unique treatment for 6-7 years in the past. as you are taking Humira, your GI prolly prescribed a lower dosage and as sole treatment, we also typically start at a lowest dose first (50mg/day). taking a medication such as purinethol in combo with humira is common practice in IBD and one of the benefits of that would be to help prevent antibody formation to the Humira. what is your dosage prescribed?

 

[Tikell]

Hi Lady Organic,

My gastro doc has prescribed 50 mg. of the 6-mp. I am off the humira since I started developing psoriasis and nerve damage. I got shingles and Complex Regional Pain syndrome while on the humira. But, who knows....maybe I would have gotten those conditions whether I was on humira or not. Still afraid to take the 6-mp. I have been reading about tumeric, fish oil and Boswellia extract. So--I think I am going to give them a whirl before the 6 mp. Don't know if it will help but I want to test alternative meds before the 6 mp. Let's just hope I don't wither way because I HAVE NO APPETITE AT ALL. Zero, none. It is so scary.

 

[Lady Organic]

ok. I'd keep in contact with your GI for closer monitoring then. Its really best if they know of your intentions.
I have tried intensive curcumin, fish oil in the past years, with no help to date. i still continue to take them and feel maybe one day I'll benefit from them. I take several other things too. For me all these alternative have become ''bonuses'', but I dont believe in them as unique treatment for me. I definately need bigger help.
6-mp takes a minimum of 6 to 8 weeks to start being effective. In all honnesty, if you have a complicated history of CD, and also you mentionned you have tried and failed differents treatments and diets, I'd suggest you go with the treatment prescribed. I know its scary to take medications, but when we think of the risks of possible damages caused by a flare, this is more of a possibility than the possibility of extreme complications caused by drugs.

 

[Tikell]

Thank you so much for your advice. I believe I'm going to have to start 6Mp. I guess I still have wishful thinking that I will find something natural to cure this dreaded disease. I have been struggling for so long and have tried so many different things. The only thing that is ever works for me is prednisones. I have an appetite and feel normal when I'm on it. I just wish it didn't have so many bad side effects.