Options for getting off Humira?

Good morning (or afternoon). I will try to keep this post short but really looking for advice. I was DX'd with Left Sided UC 2/14/12. At that time I was in the hospital with 20+ (attemped) bloody BMs a day. We tried the normal lower level meds with no success. Eventually went on Prednisone and Imuran. Worked fine until an alergic reaction in lungs from Imuran. GI wanted me on Remicade but I was a little hesitant of putting such a serious med in my body. Did a second colonoscopy and GI said I have a mild/moderate case but nasty IBS. We tried Entocort and after about 4-6 weeks i was bleeding again, 5-7 BMs with urgency daily.

So I was talked into Remicade. Was on that for a couple months but was causing serious, nasty headaches. After we determined it was not working (bloody BMs with urgency starting coming back), went to Humira around mid-December. I have to use rectal meds every once in awhile which does seem to help with the blood/urgency. Unfortunately I still am getting horrible headaches. Neurologist has me on neurontin for maintenance and prescribed Fiorcet and Percocet for when they occur.

I am at a loss right now; went to GI and he seemed to not believe the headaches were due to Humira/Remicade (I never had headaches before starting). My fear was always what is all this medication doing to my body short/long term...especially after the Imuran lung incident (5 days in hospital). I can probably live with my UC symptoms but can't function with these headaches. I also seem to have a problem with water absorption because I drink lots of water and still on the verge of constipation. As I see it my options are:

1) Try new GI
2) Try new neurologist or pester her to try migraine meds
3) Surgery
4) Suck it up and deal with the headaches
5) Try alternatives (diet, ect....) - Diet has never seemed to impact my symptoms. If I try this, can I get off the Humira and how would I tranisition?

I am more rambling to myself because I think its down to trying a new GI who could potentially work with me to get off Humira or surgery.

Thanks in advance....

Do I need a prescription for LDN? Where do I purchase Slippery Elm? I am leaning towards switching docs anyway because I don't feel I am getting the support.

thanks for the quick response.

BR

I have had UC for 20 years and been through a lot of meds, diets and alternative treatments. I am now on Remicade and did get flu like symptoms with headaches for a week or two after my infusions, but I don't get them any more. They stopped after being on it for about a year. Remicade seems to be keeping me out of full on flaring, but with Remicade alone I am not symptom free by any means.

I was on Remicade for more than a year when I found the Paleo diet. The paleo diet has helped me immensely. Paleo eliminated Gerd and IBS/diarrhoea. I have to be very strict on it and follow it as laid out by Loren Cordain or Robb Wolf. I just eat meat, veggies and fruit. You don't eat grains, dairy or legumes and in the early stages of the diet you also avoid nuts, eggs and nightshade veggies.

I recently went through a rough patch and discovered that nuts were really bothering me, but it took over a month of eating them to really cause me problems. It was very difficult to figure out because you expect a reaction from offending foods immediately or within a few days, but for me it does not work that way.

Everyone is different, but from my experience I was suggest sticking with Humira so you can stay out of a major flare up and try the paleo diet.

cb,

Yes, you do need a prescription for LDN, unless you get it through India.

And if you're interested in that option, email me and I will give you the details.