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Generic Entocort... what's the next line of crohn's maintenance drugs??

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Posted 12/12/2011 5:09 PM (GMT 0)
Just got off the phone with my GI and a bit frustrated?

I'm currently on generic Entocort the last 3 months, hence I'm now flaring.  Side soreness to the right of my belly button.  I want to know the next level of meds I should try. I can no longer order brand Entocort as it has a $248 penalty co-pay.  Not happening.

My GI says I can take imodium or Librax (pain med) indefinately.  Can someone explain how doing that I'll go into remission?  Is it not only masking the symptoms?

The next line of defence is 6mp, correct?  I've read side effects are headaches?  I already get headaches and afraid to add to them.

Welcome any suggestions/advise you'd like to give.  How do I get myself into remission. 

Pretty frustrated and just plain angry ~

Nancy   devil

p.s.  think it's time for a new doctor ??  the disconnect between doctor and patient is astounding!

Posted 12/12/2011 5:33 PM (GMT 0)
I know the feeling of frustration and anger you get from docs. My doc never thought of my meds along the lines you have said. He just told me that he is going you try out everything with me except biologics since I have no naked eye inflammations. I'm on Entocort, the brand one, but I'm not a US resident and a friend got it for me from Australia, so sorry I cannot get the copay issue. Can't you try out pred as you are flaring? I have been taking this Entocort for a month now and it doesn't seem it will kick in.

If you are worried regarding 6mp, try either Azathioprine or Imuran. I have had very bad experiences with both of them but I have read many posts that they succeeded in getting many people into remission while being on these meds. I take methotrexate im injections and though I haven't gone into full remission, I think that my overall condition has become better though I do have severe diarrheal bouts but not that awful pain of the past (keep your fingers crossed).

With regard to your doc, I have sought second opinions several times and quarreled with my doc a lot, left him and then returned back to him again. I doubt that either Imodium or Librax can induce remission. These are antidiarrheal drugs and Librax is to calm down the intestines if you are worried and is mainly prescribed for IBS but is sometimes prescribed for IBD. If you cannot get along with your doc and he cannot give you better medication than that, definitely, you need to see another doc.

Hope you feel better soon:)
Take care!
Posted 12/12/2011 5:40 PM (GMT 0)
6mp, try either Azathioprine or Imuran

thought 6mp was Imuran? Are they 2 different drugs? Azathioprine I think is in the same family as Pantesa, which I cannot take. So that one is out too.

tks for the doc info. mine is just too busy and really great at diagnosing...but he sucks at the aftercare? sorry...i need someone to hold my hand here?

appreciate your reply!
Posted 12/12/2011 6:59 PM (GMT 0)
Azathioprine=Imuran. 6MP has the same active ingredient as imuran. Pentasa is in the 5ASA class (with Apriso, Asacol, etc.).
Posted 12/12/2011 7:05 PM (GMT 0)
Hey Nancy, here in Canada we have Imuran made by GlaxoSmithKline, which is Azathioprine. 6MP is not Azathioprine, it is Mercaptopurine... From my understanding, and I have been on Imuran aka Azathioprine, and am now on 6MP aka Mercatopurine, the 6MP is a further metabolized version of Azathioprine. This does not mean they are they same as the chemical structure does change, but depending on side effects I think 6MP is a little easier for your body to break down.

I changed from Imuran to 6MP because I was having extreme nausea with the Imuran, and this side effect has seemed to lessen with the switch. There is serious possible side effects with both however, and if you start either make sure you are getting frequent blood tests to make sure everything is ok! Sorry for your GI, I hate when they do not explain these things, I end up researching a lot on my own :( Good luck with the meds!
Posted 12/14/2011 12:41 PM (GMT 0)
I am not sure if this is of any value, but you can get pentassa (the canadian brand) for about 175 frm Canada.
It is differnt from the US pentassa in the delivery system. I have been using this for the last coupple of years.
Wish I had better answer
Dave
Posted 12/14/2011 3:02 PM (GMT 0)
Thanks Dave for your reply.  Any and all info is greatly appreciated.

Nancy

Posted 12/15/2011 4:42 PM (GMT 0)
Generic drugs are copies of brand-name drugs that have exactly the same dosage, intended use, effects, side effects, route of administration, risks, safety, and strength as the original drug. In other words, their pharmacological effects are exactly the same as those of their brand-name counterparts.

An example of a generic drug, one used for diabetes, is metformin. A brand name for metformin is Glucophage. (Brand names are usually capitalized while generic names are not.) A generic drug, one used for hypertension, is metoprolol, whereas a brand name for the same drug is Lopressor.

Many people become concerned because generic drugs are often substantially cheaper than the brand-name versions. They wonder if the quality and effectiveness have been compromised to make the less expensive products. The FDA (U.S. Food and Drug Administration) requires that generic drugs be as safe and effective as brand-name drugs.

Actually, generic drugs are only cheaper because the manufacturers have not had the expenses of developing and marketing a new drug. When a company brings a new drug onto the market, the firm has already spent substantial money on research, development, marketing and promotion of the drug. A patent is granted that gives the company that developed the drug an exclusive right to sell the drug as long as the patent is in effect.
Posted 12/15/2011 5:06 PM (GMT 0)
Thank you for your response. 

With that said:  how is it that patients w/Epilepsy must only take brand name drugs?  if the FDA only requires the 'active' ingredients be the same, how come they cannot take generic? something is different in the pill, no?

I was told the binders and fillers in budesonide may differ from the brand Entocort and that is why i'm possibly flaring?  There is another generic manufacturer for budesonide and I'm trying them next month.

My integrative medicine doc now has me on 6000 units of fish oil and 350,000 units of probiotic daily.  She's also adding tumeric. 

fingers crossed all will clear up.

tks...  wink

Posted 12/15/2011 8:05 PM (GMT 0)
Just wanted to wish you good luck with whatever med you choose. Hugs!
Posted 12/15/2011 8:19 PM (GMT 0)
The big deal with "Brand" entocort is the delivery system and the FDA onylcertifies the active ingrediant. So, yes, your points are correct re fillers, but in addition for us, a critical issue is the delivery system and the generics do not have that. Typically Entocort is for the small bowel and it has to get there ot be effective. I was on this for 18 months and bought this also from Canada. It was a bit cheaper, about 175 per month.

One book I read was "The Probiotic Revolution" by Huffnegal. It was very informative. You may wish to grab a copy. I now take about 2 trillion probitocs units daily. I do this by eating 2 cups of SCD yogurt I make daily.

I also take tumeric.

Dave

Posted 12/15/2011 9:30 PM (GMT 0)
tks for the book link...sent it to my doctor.

how are you making your own yogert?  what is SCD?  i'm lactose intolerant and would love to make my own w/soy milk.

Nancy

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