Re: Re: Azothioprine

[Guest guest]

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. I'm confused why she put you on rowasa for one day (or however many days it was) and then stopped. Or was that your former doctor? And I agree that the traditional drugs - if you aren't on any of them yet - would be more appropriate foryou first, before your doctor resorts to an immuno-suppressant.That said, I was on 6MP, one of the components of azothioprine for several years without any harm that I know of. It never solved the problem for me, but it may have acted to keep theproblem from getting any worse. But I am not sure of that - and it may also not have helpedat all. Have you asked her if she has put time into studying LDN? Also, I wouldn't be that surprised that your recent blood test still showedsigns of inflammation, even though the FCLO seems to be helping alot - because it is going to take time for that to register throughoutyour system. It won't show positive signs immediately. Mara

[Guest guest]

One problem with all this is--whenever I mentioned anything said from the internet, my gastro doctor would go through the roof.  That seems to irritate them a lot.  (Just mentioning that because some people react that way--my PCP looked 'alarmed' when I mentioned LDN).

 

Alyssa is only 15yo and has to do what her parents say because they know what's best for her.

 

No need to stress her out over decisions beyond her control.  All she can do is ask her parents and they can do the go-between with her doctors.  Just myho.

 

Debbie 40 houston cd dx'd 3/02

scd 12/05 with lapses

[Guest guest]

One problem with all this is--whenever I mentioned anything said from the internet, my gastro doctor would go through the roof. That seems to irritate them a lot. (Just mentioning that because some people react that way--my PCP looked 'alarmed' when I mentioned LDN).I don't think you can generalize. My otolaryngologist was pretty impressed that I had managed a very likely self diagnosethrough research - and I told him I had read up on my symptoms on the internet.And at this point, my traditional GI seems to respect my opinion about my owncare. 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 currentsymptoms from the time I took those steroids in November (which I had emailedhim about) - to the raised blood sugar and consequent yeast problem, to theproblem that yeast blocks the LDN and that I was on a yeast elimination dietand candex that seemed to be working, but wanted a stronger substance - and I askedabout nystatin - which he said was local (genital and mouth), which he thoughtwouldn'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 takinganything except the LDN, so I told him about the vitamin E enemas (which he knewabout - 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 youropinion and intelligence about your own treatment. I think he has seen that I havespent 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

[Guest guest]

>> >>>> One problem with all this is--whenever I mentioned anything said from >> the internet, my gastro doctor would go through the roof. That seems >> to irritate them a lot. (Just mentioning that because some people >> react that way--my PCP looked 'alarmed' when I mentioned LDN).>> I don't think you can generalize.>> My otolaryngologist was pretty impressed that I had managed a very > likely self diagnose> through research - and I told him I had read up on my symptoms on the > internet. 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.>> MaraI've had a very similar experience with both my personal physician and my gastroenterologist. They both know how badly I react to almost all drugs (and I remind them when necessary). I'm the one that told my gastro about LDN, and about the SCD. He had heard of neither, but took up his laptop and immediately -- while I was sitting there -- started looking up stuff about LDN. He found the initial Penn State study and within five minutes said, "Well, it looks like it won't hurt and it very well might help"  -- and I walked out with a Rx. When I came back the next time, after having been on LDN and the diet for about five months the upshot was, "Keep doing what you're doing." I've refused antibiotics, asthma and allergy meds by mouth from my other doctor, and various immune-suppressing Crohn's drugs from the gastro, and they're ok with that. They know how much stuff like that effects me badly rather than beneficially, and they know I'm not stupid, am not going to do anything stupid, and that I do a lot of research -- which they're happy with, I think. (And it saves them some work!)For a short while I had a gastro who didn't treat me like that at all. He didn't want to hear anything from me about what I know about my own body's reactions to things, and especially to drugs. He simply wanted to prescribe an immune suppressant and wanted me to accept it because he's the doctor, and he sneered at non-drug remedies. I went to him exactly twice and then found another doctor. And then I understood why this guy, who's supposedly a great specialist in Crohn's disease, got bad evaluations from patients -- which evaluations I also found online. :-) n ______________________________A funny, touching gift book for cat lovers. Signed copies, free shipping (U.S., reduced elsewhere): Confessions of  a Cataholic: My Life With the 10 Cats Who Caused My Addiction by n Van Til www.wordpowerpublishing.com  

[Guest guest]

I'm confused why she put you on rowasa for one day (or however many days it was) and then stopped. Or was that your former doctor? That was my general doctor, not a GI. We basically told her we wanted to try it, so she prescribed it, and then we made the decision to stop after one day to see if the acupuncture/herb combo would get me better alone.And I agree that the traditional drugs - if you aren't on any of them yet - would be more appropriate foryou first, before your doctor resorts to an immuno-suppressant.That said, I was on 6MP, one of the components of azothioprine for several years without any harm that I know of. It never solved the problem for me, but it may have acted to keep theproblem from getting any worse. But I am not sure of that - and it may also not have helpedat all. Have you asked her if she has put time into studying LDN? Yep. She won't prescribe it. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)

[Guest guest]

Hi Alyssa

Email me offline and tell me where you live and I will try to find a doctor that prescribes LDN for you.

Sky

To: BTVC-SCD Sent: Fri, 19 February, 2010 6:48:32 AMSubject: Re: Re: Azothioprine

Have you asked her if she has put time into studying LDN?

Yep. She won't prescribe it.

Peace =)

Alyssa 15 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

[Guest guest]

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 lotof die off lately and it's really enervating. Hopefully I'll have a good surge after a week, too. Mara 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.mARYAnd at this point, my traditional GI seems to respect my opinion about my owncare. 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 currentsymptoms from the time I took those steroids in November (which I had emailedhim about) - to the raised blood sugar and consequent yeast problem, to theproblem that yeast blocks the LDN and that I was on a yeast elimination dietand candex that seemed to be working, but wanted a stronger substance - and I askedabout nystatin - which he said was local (genital and mouth), which he thoughtwouldn't really help in the situation, so then I asked about diflucan - and he agreedto give me a prescription for it just like that. He asked if I was takinganything except the LDN, so I told him about the vitamin E enemas (which he knewabout - and I told him I had found them helpful) and s. boulardii (which he had toldme about himself a few times years ago) and heavy duty probiotic yogurt (and Ireminded him I was on the diet.) It's really nice to be going to a doctor long enough so that he respects youropinion and intelligence about your own treatment. I think he has seen that I havespent time in the last several years educating myself about the diseaseand he knows very well that the conventional meds didn't work very wellagainst it in my case. Mara