Medications not working/Humira?

[wozzicat]

Hi Everyone,

I am new to the forum and I am so happy I have found it. My husband has been diagnosed with crohn's for almost 9 years. He has tried every drug imaginable. 5-asa don't work, imuran and methotrexate makes him extremely anemic, remicade stop working and now he is on humira. It has been 3 months and it isn't working. I don't know what we can do. Do you think Humira takes longer than 3 months to work. We are at a loss. His hemoglobin is 89 right now and going to the bathroom at least 14 times a day.

Thanks so much for your help.

 

[Kev]

The following is the same response verbatim to your other post, just in case you have any problems navigating this site, and can't find your original post, OK?

"Hey Jen.. Welcome to the forum. Sorry to hear about your husband. One of the regular members on here is posting a daily diary on her humira experience. I heartily recommend you check out katiesue1506 posting. hope that it helps."

If your husband continues to see no improvement on the humira (hopefully an unlikely occurance, but one never knows) and if you've expended all your other options, there is something that you may want to consider trying. first, you'll need to do some research on Low Dose Naltrexone, or LDN for short. There is a published report (American Journal of Gastro enterology) from spring of 2007 (I could be wrong, it may have been earlier - just search the forum for LDN, else Google it, OK.. there are numerous references to it on the worldwide web, OK)
anyway, short version goes like this. Naltrexone is a drug thats' been around for years. Originally intended for treating alcohol or opiate addiction, recently it has been trialed for treating numerous diseases, including MS, cancer, and IBD

It showed remarkable levels of success in the IBD trials, 89% of the patients on it showed great improvement over 12 weeks, even at their 16 week follow-up. What is even better, the drug is used in extremely lose dosages, so the risk of side effects are truly minimal. A 14 day supply for an addict case would suffice someone with IBD for 15 months. anyway, long story short, myself and some others on here are experimenting with it. I've been on it for only a few weeks, but I've experienced remarkable improvement. So what' the downside? Well, I said experimenting because the drug was only tested on 17 patients so far. Its an older medication, off patent, and the manufacturer isn't keen on paying for tests for people who will only use minimal qty's at best. so don't hold out hope a lot of other studies will be forthcoming. there is one currently in early stages, but like I said, the manufacturer isn't on board, so it's all being funded privately
Second, the use of this drug was never approved by the FDA or other bodies in the treatment of IBD. doesn't mean it isn't safe, per se. just that, without the pre-requisite testing I mentioned, it wasn't done. It was tested/approved for dependancy, and at much higher doses... so it is both safe for us AND a doctor CAN legally/ethically prescribe it, but it takes a 'brave' doctor to do so, and lots of convincing/pleading/begging. If you hubby is running short of options, AND traditional meds aren't working... IF you go to a doctor with the printouts from the AMG, or some of the various LDN websites, they may be willing to try it, OK

I went that route. took me 3 months to convince my GI. Took a couple of weeks for it to start. I caution you, it does work slower than other meds that I have tried... And, my results have been a bit spotty overall. But, on the whole (no pun intended) this drug has changed my life for the better, and I now have hope for the future. Be that as it may, it isn't the answer for everyone, and I'd caution you do to your homework, research it, weigh your hubby's options, and then decide. Just my personal opinion, and I'm no doctor or anything. Just one of the gang on here who has run short of opitons too. I hope, whatever your decision is, that things turn around for your husband real soon/ Merry Xmas

 

[wozzicat]

Thank you

Thank you. That sounds very interesting. It is always good to know there are some options out there somewhere.

Thanks,
Jen

 

[D Bergy]

I second Kev's opinion on LDN. I am taking it and am stable. I was stable when I started it so that does not mean much, but I have reduced my other supplements with no issues. I could not do that before LDN.

Kev on the other hand had very definite and pronounced symptoms and it seems to be working for him, slowly but surely.

The side effects possible from LDN are disturbed sleep in the first few weeks and that is all I recall. Some of the good side effects are the protection from Cancer and Alzheimer disease. Compare that to other medications and you can see why we decided to use it. And it is cheap. $35.00 a month for mine.

Here is some links for more info:

http://www.lowdosenaltrexone.org/

http://health.groups.yahoo.com/group/lowdosenaltrexone/

http://ldn.proboards3.com/index.cgi

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

Good Luck

Dan Bergman

 

[Kev]

Yeah, Wozzicat.. Dan and I aren't the only ones who've given this LDN a try. At least one other member, Killerzoey, has opted to see if this treatment is the right choice. And I'm sure that you have probably been overwhelmed with advice and or opinions as to what to do, from this or various other sources. If you are like me you probably feel at least a 'little' skeptical (sp?) over supposed 'miracle cures'. I know that I've heard, even researched some, claiming that a specific diet, or treatment, or whatever, would make this all just go away. I've read up on diets, worm treatments, holistic, and even spiritualistic approaches to getting rid of this illness. The thing of it is, most of those arent' based upon or backed up by science. The LDN approach is different. There are studies, and if one delves into it, you can begin to see the science at the root of this method

Dan briefly mentions the possible side effects. I neglected to, as they are very mild. I was aware of them when I began, and I expected them to be far worse than they actually are. Apparently I've had more than the others, probably due to my illness being overly active at the time I started this therapy. The effects? I had vivid dreams. Not nitemares, or anything along those line (which is what I expected). Just nice dreams that were loaded with a lot of 'vivid' details. As side effects go, you got to admit it beats the adverse effects of other drugs. I just came off one a few months back where the side effects/extended usage issues were kidney cancer, liver cancer, even a rare and nasty skin cancer. It seems almost laughable to rank dreams in the same categories as all of these.

Look, without giving into the temptation of telling you what you should do, the other chief reason I was willing to trial this (so to speak) was a deep concern I had that one of my children might inherit the 'gene' that makes one vulnerable to this damned disease. Figured if I couldn't beat this for myself, at least I'd be able to add to the evidence, one way or the other, of whether LDN truly works.
The great news is that it appears to live up to the early testing. My condition is on the upswing, and that is the first time I've been able to say that in years. I have had good periods before, but that was strictly on 'short term' therapies, like pred. I was on it for nearly a year straight, every time I came off of it, my condition would rapidly deteriorate. I wouldn't suggest, let alone recommend this therapy if there wasn't scientific evidence to back it up, and if I hadn't seen first hand the improvement it offers. Keep in mind that I played 'guinea pig' in order to perhaps make life easier for my kids one day. Or my sister with MS.


anyway, whatever you folks choose to do, I hope and pray it works for you, OK

 

[Brando]

you might consider this route as well:

http://www.krysalis.net/crohn.htm


although it's not FDA approved etc. it is a very good read at the very least. there is alot of testimonials from people that have gone this route and it worked for them.