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Ulcerative Colitis
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Posted 8/18/2011 7:50 PM (GMT 0)
As the title says I'm a noob so please be patient if I'm a little slow.

Have had UC for the past 26 years and like all of us most treatments are hit and miss so here is my story.

For the past 10+ years Ive been on 75mg of 6MP and 3 grams (6 pills 3x's a day) of sulfasalizine daily. (I can't tolerate 8 pills of sulfa)

Taking Sulfa has not really been any real problems all along however it's just not enough alone to control my condition to my satisfaction.

I have had great success with the 6MP unil July of this year to the point where I can no longer take the drug due to side effects.

So I'm at the point of looking and hoping once again.

I have read a fair amount of information on Boswellia and I was wondering if anyone has actually given it a try and if it was taken while being on Sulfasaizine.  I did just buy a bottle and started taking just one 250mg pills a day (Cuz I'm a chicken) over the last 2 days so the jury is still out at the moment.

The real concern for me is how much would be considered too much and has anyone tried the combination and results?

 

Posted 8/18/2011 7:56 PM (GMT 0)
Hi..welcome.

So, have you been on Asacol?

Have you tried the rectal mesalamine meds?

q
Posted 8/18/2011 8:03 PM (GMT 0)
Thanks!

I went on Asacol in the past and it really didn't do as well for me as the sulfa.

Also tried the Rowasa rectal meds and they helped but once the 6MP kicked in I really didn't need the Rowasa any more. 

For me fortunately the 6MP kicked in almost over nite and for the last 10yrs or so all has been great.  At this point I can't take it any longer and I'm trying to stay ahead of the curve. 

 So I'm looking at alternatives and the best that I've seem to come up with so far just from researching seems to be Boswellia.  Maybe...

Posted 8/18/2011 8:36 PM (GMT 0)
bear,

What are your side effects with the 6MP? Have you had a recent colonoscopy to know where your inflammation is?
Posted 8/18/2011 8:45 PM (GMT 0)
Dizzy and shallow breathing or shortness of breath.

I even stopped taking the drug for about 3 weeks all went away.  Then the DR. told me to start taking a half a pill daily and believe it or not I just started taking a quarter of a pill and within 4 days side effects were back.

Colonosopy is sheduled for 25th but I can feel things starting to stir down below.  I have one performed every other year and the last 3 have been great with no sign problems.  TY 6mp but now that's over so who knows...

Posted 8/18/2011 9:00 PM (GMT 0)
That's really odd that it would do that after 10 years - kinda scary! I wonder if it would help if you took it before sleeping at night (sleeping off the symptoms)? Was your blood work OK while you were on it and you were experiencing these symptoms?

You could try Imuran (almost same as 6-MP but breaks down differently in one's body), but it might produce the same side effects that you had with 6-MP...but it might still be worth a shot.

The reason I asked where the inflammation was that some of the 5-ASA drugs (like Asacol, Lialda, Apriso, Colozal, etc.) break up in different ways, have different delivery mechanisms, and can be given at varying doses. So when one might not work, another might. Most of them though don't reach the rectum at all though and hence the use of an enema or suppository if you have low inflammation.

Unfortunately, it's all experimentation and I am going through it myself with the 5-ASAs. Good luck to you. If you have any other questions, let us know!
Posted 8/18/2011 11:44 PM (GMT 0)
I think it would be worth it to try maintaining on the sulfasalazine and mesalamine enemas, plus a high-quality probiotic and any other supplements that may help.
Posted 8/19/2011 4:11 PM (GMT 0)

NiRo said...
That's really odd that it would do that after 10 years - kinda scary! I wonder if it would help if you took it before sleeping at night (sleeping off the symptoms)? Was your blood work OK while you were on it and you were experiencing these symptoms?

You could try Imuran (almost same as 6-MP but breaks down differently in one's body), but it might produce the same side effects that you had with 6-MP...but it might still be worth a shot.

The reason I asked where the inflammation was that some of the 5-ASA drugs (like Asacol, Lialda, Apriso, Colozal, etc.) break up in different ways, have different delivery mechanisms, and can be given at varying doses. So when one might not work, another might. Most of them though don't reach the rectum at all though and hence the use of an enema or suppository if you have low inflammation.

Unfortunately, it's all experimentation and I am going through it myself with the 5-ASAs. Good luck to you. If you have any other questions, let us know!

So weird after 10 years that it took 6 months to figure out it was the 6MP.  Blood work was all fine. I had a pretty bad bronchitus over the winter and it all seemed to start just as I began antibiotics and an inhaler.  But once the bronchitus went away the symptoms continued.  Finally I just stopped the 6MP and within 5 or 6 days all good. 

I noticed that your taking VSL#3 and to be honest I just noticed it from this forum.  Did you notice any change once you started?  Currently I'm taking Align but from reading up on VSL web site it seems to be directed towards UC. 

Any one else on VSL#3 notice any difference?  And do I can the Align and try VSL#3?

Posted 8/19/2011 5:26 PM (GMT 0)
I seem to be able to control flares by use of VSL#3 DS - thr Double Strength, prescription kind (which means, being prescription, that my insurance helps pay for it.)

I take 3 packets a day - each packet 900 billion units...... Align is one billion, I think? So each packet is like 900 align capsules...?

(My son takes Align and when he was in a small flare a while back he took two a day.)

I had started to flare earlier in summer, so I upped the VSL to 3 a day and the bleeding stopped, the stools have been less frequent, less urgent, better formed. But it took these mammoth amounts of VSL to do that.

If I were you, I'd really try the rectal meds, like Rowasa. And... sure, a lot of folks combine probiotics. Some packaged probiotics are combinations of strains anyway, so in my opinion, why not?

Best of luck to you! Keep us posted!
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