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problem tapering Pred - discouraged

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Ulcerative Colitis
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Posted 4/14/2011 4:12 PM (GMT 0)

I started 6mp when I started my last course of Pred in late Jan. I was advised to taper down only to 15mg and hold for 6 to 8 weeks while the 6mp kicked in. A few weeks back it was time to start tapering down from 15mg of pred. It was a slow taper of only 2.5mg per 10 days.

But within a few days of dropping below 15mg, some bleeding (mostly in morning) reappeared, and BM got more watery. During the 10-20 days at 12.5mg and 10mg, lots of mucus and gas returned, and some urgency during the workday. Now while moving between 10mg and 7.5mg, urgency is a problem, there is lots of gas, there have been a few small morning accidents, and I have some concern there may be an accident at work. This does not seem good?

Is this evidence the 6mp is not helping? Does this suggest I am Pred dependant?

I'm doing 4.8g of Lialda daily, and 100mg of 6mp. (Some OTC probiotics, CitriCell fiber, Vit C, D & E, oral Iron). My Gi said rectal meds were expensive, but I could go back to him about that. Thing is, they might address some of the bleeding and urgency, but I don't think they are the answer for the complete lack of solid stool that I am rapidly reverting to.

I'm wondering if the CitriCell is contributing to the gas? Is is supposed to be one of the fiber supplements least likely to cause gas. I am also considering heavy use of OTC Gas-X because I think it is the gas that drives the urgency.

Other than going back to 15mg of Pred, I am not sure what my best options might be. Try a gluten-free diet? Get some transdermal LDN?

Feeling a little discouraged.

Posted 4/14/2011 8:13 PM (GMT 0)
Hi DB,

I am sorry you're dealing with this problem while taperiing off of pred. I think many of us have been through the same situation. I was recently stuck at 15mg waiting for 6mp to work as well. In my situation, I was getting frequent blood work to see whether I was in the theraputic range for 6mp. Have you been checking this? If you're not in the theraputic range, you will see little results from 6mp. I recommend you have that checked asap or ask your doctor what the tests have shown if you have had them done already. My doctor shows me the results of mine so I am more familiar with what they look like and I recommend that you ask to see your results so you can get an idea of what all of this means. The test is called 6mmp/6tg.

If you have insurance, I definitely recommend getting rectal meds. Either steroid or mesalamine or BOTH. I would use a steroid foam enema at night and a Canasa suppository in the morning when I was in your shoes. Rectal inflammation can cause all the symptoms you mention, even accidents. You don't have to have your whole colon inflammed to have bad symptoms. I know a lot of oral meds don't treat the rectum so rectals are important.

I don't think going back up to 15mg is a bad idea if it's going to get you back to feeling well again. You need to get that test I mentioned to check how you're doing with 6mp, and go from there. If it's not the right drug for you, you can try LDN but that is considered an alternative treatment, Remicade would probably be the next mainstream medication that your doctor would recommend. I've mentioned LDN to my GI a few times and i've never gotten good feedback. I don't think she knows much about, nor would she be comfortable prescribing it. I would probably have to see someone else if I wanted to go that route. I've heard GPs and Rheumotoligists are more likley to be openminded to LDN. You could also try gluten free diet or SCD, that helps many people. It did not help me but I gave it a try. Anything natural is worth a try over drugs in my opinion. Unfrotunately for me, drugs seem to be the only thing that help.
Posted 4/14/2011 9:15 PM (GMT 0)
this is very helpful. thanks.

we tested for possible toxicity or contra-indications a few weeks after I began to taper up on 6mp, but we have done no test for therapeutic range. I am only at 100mg, which for my weight is low by about 25mg. I was having a little fatigue that seemed to coincide more with the 6mp and less with anemia (i.e., it was shortly after iron infusions, and shortly after moving from 50mg to 100mg of 6mp) so my doc suggested we stop at 100mg. I am going to read up on 6mmp/6tg - big thanks there!

I do have insurance for meds, although I pay about 25% or 35% (for brand) drugs. I will inquire once again about them - at least trying one of them. It has also been about 16 months since I was scoped/diagnosed. I wonder if it might not be good to ask for another look with specific inquiry as to any change near the rectum.

Gluten-free seems like to easy to be true, so I have my doubts. I guess I could try for a week or two with little effort however. But, after eating large meals of DreamFields low-carb pasta, which includes a gluten paste, I have had some of my best days. Maybe it was the spinach parmesan sauce I made. SCD does not really appeal to me and seems difficult to implement. I could imaging daily spinach/sunflower in my diet. Much to think about.

I think I will ask about going back to 15mg Pred, at least for the next 60 days. It is a real crucial time at work, and I am out of sick leave anyway.

Best,
DB
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