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please help with medication - suggestion

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Ulcerative Colitis
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Posted 1/26/2011 3:28 PM (GMT 0)
Hi

I am girl 28 year old from uk diagnosed with ulcerative colitis (throughout) last year in feb 2010. I shall try to keep my post short.

feb 2010 - daignosed UC after 8 days admission in hospital ( colonoscopy) after continuous D with blood. Was put on IV hydrocortisone ( 500mg/day ) for 5 days and bleeding + D completely stop . Put on Asacol 6 pill/day with predisolone 40 mg reducing tapering 5 mg per week

march 2010 - admission hosptial for 15 days due to D and bleeding - again IV hydrcortisone ( was on ascol 6pill/day and 25mg steriod reducing course on admission ) - discharged after D came under control but little bleeding still exist ( discharge with asacol 6 pill/ day and again increase dose of steriod 40 mg per day )

april 2010 -  hospital admission for 21 days again for same reason as above - was on IV hydrocortisone for 10 days still bleeding did not stop though D came under contol. Was put on Inmuran 50 mg = 40 mg steiod .

This time in april i had my convo with GI and i told him that asacol is just passing by in stool without dissolving. So he put me to stronger medication like Imuran. By this time i made my mind no matter what happens i wont end up in hospital . I shall try to work out with oral medication as even intraveneos steriods stop working for me only leaving huge side effects like i need to crawl on stairs , hair growth , joint pain, bruise all over etc etc .

Since april i am stuggling with uc. Just on and off steriods orally and imuran regyularly. I thought imuran takes while to kick in and i am more than 8 month on Imuran. while its only giving me hair fall to extent i am going bald. I am still bleeding which is mostly fresh blood . I have arrested myself in house from one year because in june due to being on high dose of imuran my immune system went so down that i picked up shingles and still have muscle pain where it existed. I have bm 10/day unformed and still bleeding.

My question now is

1) ascol was passing by so was put on pentasa granules and it gave me very bad D so my GI said may be mesalazine is not suited you. I used asacol foam enema but again it gave me D so does it means i should not try other brands of mesalazine.

2) currently i am on imuran 100 mg and i cant increase my dose as i am 40 kg only. I dont think its working for me as neither its put me into remission nor stop my bleeding . So what should i do with this medicaiton should i continue or stop it ?

3) My Gi is  telling me remicade but i am so tiny and lost so much weight that i am not ready to take such strong medicaiton right now . what are the other medicaiton which i can take orally before trying remicade.

4) Recently i started taking predfoam enema(steroid 20 mg) nightly. How long can i take this dose.

All your advice is really apreciated.  sorry for long post i really tried to keep it short.

current medicaiton

imuran 100 mg/day

predisolone 20mg per/day

low fibre diet

 

Posted 1/26/2011 4:03 PM (GMT 0)
At the end of our resources section, I compiled a list of medical/alternative options:
https://www.healingwell.com/community/default.aspx?f=38&m=1666318

You may want to take a look to familiarize yourself with some of the treatments.

Have you been getting your blood checked while on Imuran? I was on 6mp and not in the "theraputic range" and it was not doing much for me. I was able to add a 2nd drug called allopurinol and it has gotten me into the theraputic range and decreased liver toxicity. You should definitely be getting regular blood work while on Imuran, every couple weeks at first and then every month. They should be checking the levels in your blood.

Are you taking probiotics? They don't seem to help me drastically but many people swear by them.

You could try other mesalamines, it doesn't sound like you're having too many bad side effects. They are the easiest and the least toxic but you will probably have to tell your doctor you would rather try the various options than try remicade. You could try Apriso or Colazal, Canasa suppositories, (salofalk outside the US), mesalamine enemas (if you can retain them - doesn't sound likely if you're having that much D).

As for steroids, have you been decrreasing when you have symptoms? I know how much it sucks to be on steroids but if you rush through the taper, many times we end up flaring. Were you tapering 10mg? My most recent taper I had to go at 5mg until 15mg and 2.5mg after 15mg, then 1mg after 10mg.

Is predfoam helping you? I think you can safely use it for a couple months (not sure - check with your GI) but it can cause a lot of the same nasty side effects as oral prednisone. I was using cortifoam for a while and I am okay. 20mg sounds low compared to my dose. http://www.druglib.com/druginfo/cortifoam/ It says 80mg, maybe you can ask for something stronger?
Posted 1/26/2011 4:23 PM (GMT 0)
thank you so much for your quick response.

well i do have regular blood test and my crp is shoots like 46 and i am anemic 99 . Also liver test are fine. I also have other issue like green stool soft unformed though my stool test does not show infection and i do not take any iron supplement as it cause me D. I really want to work with mesalazine . Should i try mezarvant and if it cause me D straightaway should i stop it.

Not sure about decreasing symptom. but i really appreciate your suggestion . I shall try to go slowly rather than dropping 5 mg per week.
Posted 1/26/2011 4:31 PM (GMT 0)
How about a different formulation of oral Mesalamine with the Imuran? We have a few Imuran only people here but I think most of the Imuran users take it in combination with something like Asacol. Lialda (Mezavent) perhaps? As NSSG said a slower taper from 20mg down on pred. might help as well. Good luck! :o)
Posted 1/26/2011 4:40 PM (GMT 0)
I have had UC for 3+ years since diagnosed with it.  Not as bad as you but was continuous up to 12 times a day, witah several times not making it to bathroom.  Finally in remission for the last 2 months.  I am taking humira injections, 9 months, 3 tablets of entocort, now down to 2.5mg of predinsone, from 40mg,  also now taking VSL#3 DS, for 2 months, I am sure between the humira and DSL#3 DS, that is what has put the disease in remission.  I now feel like I am getting my life back.
Posted 1/26/2011 6:59 PM (GMT 0)
It is not a regular blood test. It is specific for 6mp/Imuran. The one I get is called 6MMP. I am not sure if it is the same for Imuran but I can't imagine how the GI would know if you're in the theraputic range if you're not getting these tests.

http://www.pathology.med.umich.edu/handbook/details.php?testid=1230
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