Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Alyssa wrote:> (or however you spell it). Does anyone on here take it, or have taken> it in the past? ly, I'm really scared to start taking it. I just> feel like it's so foreign to my body that it could do anything to me> and I'd have no control over it. So anyways, I'd appreciate any input/> experiences you've had with this drug!>> Hi Alyssa>> I been on it for nearly 20 years for a kidney transplant and I hate it. > I am on 75mg. It has wrecked my bones and skin. You never want to take > something that supresses your immune system if you can help it. I know > your parents are against low dose naltexone but if you were my daughter > I would be trying low dose natrexone before I put you on azathioprine.>> SkyAs would I. You're right to have qualms about taking it. When a person has an auto-immune disease mucking around with suppressing the immune system is not the best first approach, though it's the most common approach to treating IBDs. Serious side effects are not rare, alas. The irony is that it also causes gastrointestinal side-effects in a number of people. Being forewarned is forearmed, as they say. It's one of the immune-suppressing drugs that I've refused to take for my Crohn's. This site lists and explains all the possible side effects, including incidence among users (percentage of people who get specific side effects):http://www.drugs.com/sfx/azathioprine-side-effects.htmln-- A fine gift for cat lovers:Confessions of a Cataholic: My Life With the 10 Cats Who Caused My Addictionby n Van Tilwww.wordpowerpublishing.com ; signed copies; free shipping in U.S., reduced shipping elsewhere Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Alyssa, I agree--lesser meds would be preferable. I have taken Lialda with great success for my UC. It is mesalamine, but in once a day extended release dosing. It is convenient, and effective. It takes approx 3 months to get the full effect. It can be expensive, but no more than 6-MP. I have a discount card from the company I can mail you that reduces the monthly cost when you submit it to your pharmacy. Perhaps you can discuss this with your parents and Dr. that you would like to try more 'traditional' meds for UC before you take an immunosuppressant. It looks like you are taking no meds now. I found the combo of Lialda and SCD worked really well. The Lialda has a local anti inflammatory effect on the colon, and is minimally absorbed systemically, making it have minimal side effects. I tolerated it really well and it made a difference for me. Let me know. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2010 Report Share Posted February 18, 2010 Mara, how nice you have a doctor who respects you and your research! I have a good one, too, though he tends to start fizzing a bit if I veer too far toward self-diagnosis from the Net. But he's always open to discussion about whatever I bring in and I have to admit, he often thinks of things I hadn't considered. I wanted to comment on Nystatin a bit. I know a lot of doctors do not think it works except locally but the good alternative docs disagree with that. Several decades ago I was on it for a couple of years for systemic candida and it did help. Fast forward to recently. SCD and LDN brought me to the point that we realized I almost certainly have candida again. I really fought taking the Diflucan but finally decided I simply must. And... I've had virtually no troubles at all. Now in the fourth week (of four) I am sneaking up the doses of Nystatin, which I will probably be on for several months. When I talked to the doc a couple weeks ago I asked him why the switch, if Diflucan stops working after the month and Nystatin takes over, or what? He said they work differently. He had told me Diflucan doesn't cause die-off, it " surrounds the candida and escorts them out " , hence the mostly lack of side-effects. Nystatin can cause die-off, hence me sneaking into it. He said the Diflucan takes care of the easy bunch and then you need the Nystatin to take care of the more entrenched, more hidden ones. So, actually, I think Diflucan is the way to go first if you have a choice, and take care of as much as possible the easier way. I might say that after about a week on the Diflucan, I had quite a surge of improvement, really. It surprised me and I was delighted. I'll see how the Nystatin goes. When I took it way back when I had to spend about two months getting up to the right dose. I'm building up pretty fast this week. Good luck. The more I know about candida, the more I think it's a good idea to get rid of it. After the Nystatin I expect I'll take s boulardii and rotate the garlic, oregano oil, etc as insurance. mARY And at this point, my traditional GI seems to respect my opinion about my own care. Just went to see him today for the kind of bloodwork we've been discussing lately, thryroid, vitamin D, B12, etc. and then explained the whole genesis of my current symptoms from the time I took those steroids in November (which I had emailed him about) - to the raised blood sugar and consequent yeast problem, to the problem that yeast blocks the LDN and that I was on a yeast elimination diet and candex that seemed to be working, but wanted a stronger substance - and I asked about nystatin - which he said was local (genital and mouth), which he thought wouldn't really help in the situation, so then I asked about diflucan - and he agreed to give me a prescription for it just like that. He asked if I was taking anything except the LDN, so I told him about the vitamin E enemas (which he knew about - and I told him I had found them helpful) and s. boulardii (which he had told me about himself a few times years ago) and heavy duty probiotic yogurt (and I reminded him I was on the diet.) It's really nice to be going to a doctor long enough so that he respects your opinion and intelligence about your own treatment. I think he has seen that I have spent time in the last several years educating myself about the disease and he knows very well that the conventional meds didn't work very well against it in my case. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2010 Report Share Posted February 19, 2010 The reason I fought the Diflucan idea was because way back when, I was on another one, Flagyl or something, prior to the Nystatin, and that made me deathly ill. So I think I just didn't believe him that the Diflucan wouldn't do the same thing. Yes, he prescribed it for a month (today will be day 25), presumably because that's what he thought I would need. I asked about the Nystatin and he said " at least two months " . I hope you will have a good experience with the Diflucan, too. > SCD and LDN brought me to the point that we realized I almost certainly have candida again. I really fought taking the Diflucan but finally decided I simply must. I'm curious why you resisted it in the first place? Also, were you on it for a month? I got a 14 day prescription, but suppose I can request a refill. I'm glad to know that diflucan doesn't have die off. Since I've been having to deal with a lot of die off lately and it's really enervating. Hopefully I'll have a good surge after a week, too. Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2010 Report Share Posted February 19, 2010 Yes, regular MDs can certainly order the saliva test but I think it depends on the insurance company whether they pay it or not. I notice now I'm on Medicare that they pay for a lot fewer things like this. But I always run it through them just to see. Can regular doctors order the saliva test from an ordinary (read: insurance covered) lab, or is it too " alternative " for that? Holly Quote Link to comment Share on other sites More sharing options...
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