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Ulcerative Colitis
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Posted 5/24/2020 1:48 PM (GMT 0)
I use sfRowasa because I have a sulfite allergy and it is out of stock once again. Right now it will be back in mid-June but that date isn’t set in stone, in fact it usually takes 2-3 months. I currently use it every other day along with 4 generic lialda and 100mg of Imuran and I am definitely starting to flare again. Only going once a day but seeing lots of mucus and some minor bleeding. I “see” the PA at my GI’s for a virtual visit June 1 and I am trying to figure out what to ask for next. Because the sfRowasa is not available reliably would I be better off bumping up to something like humira or remi? My insurance required me to fail in Imuran first and it sure looks like I headed that way. I started Imuran in January of 2019 after being unable to taper off prednisone. My husband thinks I should try to DIY enemas from Canasa, but that weirds me out and it would take so many to make the equivalent of 1 sfRowasa. Would it be worth switching to a different 5-asa? I often poop my pills out somewhat while. Any advice you guys have would be much appreciated! Thanks
Posted 5/25/2020 7:43 PM (GMT 0)
Hmm not sure how switching from one mesalamine oral to another would make a big difference.

You could ask a compounding pharmacy to make sfRowasa for you.

Maybe get some labwork, like an Inflammation test before deciding on biologics? You might need it if starting imuran the beginning of this year isn't sustaining you in a long term remission....
Posted 5/25/2020 8:57 PM (GMT 0)
I'm in the same boat with SFRowasa. Meda is completely unreliable with this medicine.
I'm using the sulfa ones now because I have no choice, but they are causing me problems. I will hopefully be starting Entyvio whenever Mayo opens back up. They've been shut down for months.
Posted 5/26/2020 2:28 AM (GMT 0)
Sorry that this med problem is hitting you now, especially with the pandemic virus disrupting doctor appointments, etc. Have you ever tried Pentasa? Assuming you have pancolitis that's probably the only oral 5-ASA left which might help you, if it's still being made. We had several forum discussions going back about 7 yrs on the efficacy of oral generic 5-ASAs, considering that some may only contain 80% of the active ingredient. I don't recall reading about members pooping out whole generic Lialdas, but it was a fairly common complaint in the past RE Asacol. You could try to contact the nearest CCFA online to find out whether they have any info on sfRowasa production problems. There were problems with regular Rowasa going out-of-stock in pharma warehouses ca. 12-13 yrs back, when the original producer dropped it and it took 2-3 mo. before a new one resumed making/marketing it. It was a big topic here when that happened and took us a while to find out what exactly was going on. / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/26/2020 6:36 PM (GMT 0)
Meda is the absolute worst!
I had a crp year done with my routine blood work in early May and it was up from 0.7 to 0.9. So it went up but not badly. My disease is only to 27 cm, so not that far up, but I was going to ask for pentasa thinking that the granuales might be easier to process.
Last time I asked a compounding pharmacy to make enemas for me they said they couldn’t because there was a commercial drug that exists. it didn’t matter if it wasn’t available, it would be illegal for them to do it. I was thinking of trying some regular rowasa and see if I react to it, I am very sensitive to sulfites in foods, so my guess is they will bother me.
We shall se what happens, thanks for all your suggestions.
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