Further meds to prevent flare up?

Im closing in on coming off pred dropping down to 10mg tomorrow so only 2 weeks to go...
Really this is what the doctors have said is my "last stand" 125mg of 6-mp. I got a good run to be fair (5 months) on 50mg of 6-mp, so they have bumped it right up, got some pesty side effects like sickness etc but if it stops me from flaring so be it. Also on 4g pentasa.

I was only diagnosed march last year and I've had 9 flare ups and 9 admissions to hospital as it really gets that bad and I lose so much darn weight, and as an effect I lose so much money etc. Struggled to get my life on track but I've paid out for my pt course so I can be self employed as theres no chance of being employed to be honest with this disease. But im quite happy with that, but I've paid a large amount out couple of thousand and I pay it up monthly. So I start that in october and if I go back into hospital thats me screwed yet again as I started something like this in January and lost out my deposits because I went into hospital.

So I've read all these new treatments on here, unfortunatly my GI hasn't mentioned them and they are always unwilling to offer something like fecal transplants etc but I will ask anyway. What would be worth getting or adding to treatment? going to try get this LDN treatment, what else can I get that would help? again this is a last stand and I REALLY don't want to flare up as if I do im in deep deep waters.

Starting a course of testosterone next month after I come off the prednisone as well but don't think this will affect the colitis.

I would definitely try LDN. I started it just as I became allergic to Humira (after 1-1/2 years if it becoming increasingly ineffective) and it has coincided with me getting completely off prednisone and all meds other than the new LDN- and now largely in remission knock on wood, after being on the verge of surgery. I cant be sure it was the LDN that did the trick and thus dont knowif this will last , but it sure seems to be a funny coincidence- well worth trying, and as best as I can tell it is completely non-toxic.

If you're wasting away money that much you might as well just fly over here and pick up LDN in the states.

I know this is not new but have you tried Canasa before? or discuss the possibility of biologics like Humira? but I'm guessing that you probably don't want to go this route, well no one does.

I came off of 6mp two years ago b/c I was getting these red bumps on my upper body, probably an allergic reaction.

Are you eligible to see a different GI doctor who might be more open minded to other treatments?

tank89,

I hope you can get your GI to prescribe LDN for you.

IF not, why don't you call Dickson's pharmacy (I had posted it for you once before) and see if they work with some local doctors to you, no?

Good luck. Let us know.

Tank, do you mean they want to do surgery if you don't respond to the 6MP? If so, I'm surprised your doctor wouldn't offer you the option of biologics. (Remicade, Humira, etc). I know a lot of people choose not to go that route but it should be your choice!

Ugh Just Ugh said...
Tank, do you mean they want to do surgery if you don't respond to the 6MP? If so, I'm surprised your doctor wouldn't offer you the option of biologics. (Remicade, Humira, etc). I know a lot of people choose not to go that route but it should be your choice!

They never mentioned humira. But if you can understand I am 21, I have flared up constantly everytime I come off prednisone, been on pred 9 times now and they said they can't keep putting me on it again as it's wrecking my body, bones etc... And I filled out sheets in hospital for the trial drug remicade + cyclosporin? whatever that is. But I just signed it, but then the doctor came back and said he'd rather give it one more go doing this then said if I flare again im in a sticky situation. But it was me who said I wanted the surgery thats no doubt why?

tank89,

Good luck, and I hope you get the LDN script.

pmedic,

Too bad your GI wouldn't give it to you. Why are they so stupid and closed minded?

Glad you found a way around the system and I hope it helps you.

Please tell us your progress. Good luck.

tank89 said...
Thx for that if GP doesn't give me it then I will order off there, I usually use unitedpharmacies for my med but will check that site out!

For those who live in s. California, a quick trip to San Diego followed by a light rail trip of 20 minutes to the end of the line at the border with Mexico, followed by a 3 minute walk across the street into Mexico will get you to an abundant number of mexican pharmacies and medical clinics catering to US customers, many right outaide the border crossing point next to the souvenier shops. Many meds that are rx in the US- for example prednisone- are OTC in Mexico. Even if naltrexone (which you could compound yourself) requires an rx there, there are many alternative minded docs at some of the clinics there who would issue you a prescription on the spot after a brief consult, and you can carry the prescription with yoU if concerned about being inspected at the US border (which is however extremely unlikely if you are a day tourist on foot, and in any case that is not the contraband that they are really hunting for.) I bet there are compounding pharmacies there right at the border crossing area too.

On all day chemist Ican only seem to find the LDN tablets? do you have a link for the cream? thx

I tried to phone them yesterday but no answer, so left my details on the site for them to call me but nothing yet.