Biologic Decision

Have not been on the forum in a while. Been in remission for about 2 years and now back in a full blown flare. Had to go to 80mg of prednisone last time. Don't want to go down that road again.
Current meds Lialda 4 tablets daily and rowasa every night.
I know my GI is going to insist on a Biologic this time. Concerned with Covid and starting a Biologic and also if you can have the Covid Shots when on a Biologic??
Thanks for any thoughts.

Thanks for sending the database ipoop. Does anyone know why hospitalizations are so high for IBD and Covid, more than 20%? Even the data on remission and mild disease and hospitalizations is around 20%. Among those on mesalamine, hospitalizations go up to 30%. There are confounding factors since patients are often on multiple meds and i'm not sure how to account for this.

Post Edited (Jane974) : 11/22/2020 6:28:14 PM (GMT-7)

The major limitation of the covidibd.org database is they don't show the correlations between parameters. In the early days of the website they used to give a full description of the fatalities (age, medication, comorbidities) which was extremely useful. I remember very clearly that the fatalities on mesalazine-only were exclusively people over 75. In other words the mesalazine is unlikely to be a cause, but something that's correlated with age and/or comorbidities (e.g. older patients are less likely to take biologics because their immune systems are weaker, and also having ibd which likely predates biologics, they are more likely to have had surgery relative to biologic use in younger ibd patients)
Regarding the overall hospitalization and death rates, these are very similar to the rates reported globally when covid first appeared and people with milder or asymptomatic cases were not tested. I can further imagine that people who get a mild case of covid may not even communicate it to their ibd doctors and data entry is purely on a voluntary basis through the ibd doctor (not like test results which are centrally logged).
I've also spoken to my GI a few months ago and he said the evidence is that ibd-ers do not fare significantly worse than the rest of the population with regard to covid.
In short, while I'm afraid of covid and the risk of triggering a flare if I'm asked to pause my medication while sick, I'm not afraid of either my medication or my UC in terms of the risk it poses to the severity of covid experienced

Post Edited (poopydoop) : 11/23/2020 2:46:31 PM (GMT-7)

EnjoyGolf, what med(s) did you take during your 2-yr remission? / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)

Old Hat

Still taking the same meds Lialda max 4 tablets daily, Rowasa at night. Not taking VSL #3 since no linger available. Taking Forrestor probiotics.

Enjoy, during previous flare did you taper down from 80 mg Pred and then switch to 4 Lialda daily + Rowasa, and continue on that 'til the present? The reason I'm trying to "map" your last 2 yrs of medication is: if 2 mesalamine meds kept you in remission for that amount of time but now you're flaring significantly while still on them-- has your doctor proposed adding Imuran/Azathioprine to your regimen? (Because that [or 6-MP] has been the traditional progression to longterm immunosuppression when mesalamine meds alone no longer prevent major flaring = additional oral med before next move to biologic [if that step up still doesn't work]) / Old Hat

Age and biologics risk is a good conversation to have with your gasteroenterologist. If there's additional risk, I'm not really sure how much. There's risk in being undertreated and flaring over the long term as well.

Certainly, for everyone on biologics, it's good to get annual flu shots and consider a pneumonia shot (if you haven't already done so).

I did read that the risk of infection from biologics is about double for older adults. The number they quoted was 13% for older adults and 6% for adults.

Yeah, pred. does not look good in terms of severe covid outcomes so another reason to avoid. The decision really depends on how much you are suffering and how miserable you feel.

At what age do they stop doing surgery for UC?

This study looks very promising due to research on microbiome! I would participate if it was near me, although It would be a bummer to get the placebo.

Treating both ends (oral + enema) seems to have strong research support and lots of anecdotal support for UC, including pancolitis. I would defer to your GI doctor since some biologics take months to reach full effectiveness. Have you tried steroid enemas?

Here is an article on topical therapies in UC: https://www.gastrojournal.org/article/S0016-5085(15)00260-7/pdf

haha--the title is great: "Topical Therapy in Ulcerative Colitis: Always a Bridesmaid but
Never a Bride?"

Post Edited (Jane974) : 12/2/2020 6:28:00 PM (GMT-7)

Just saw my GI Dr. Ran a bunch of blood test. We decided it would be best for me to try Humira. Any input from anyone on this biologic would be appreciated.

Yikes, that is incredible! Do you have to pay out of pocket or does medicare cover? How much is your out of pocket cost on this?

At over 60k per year, no matter these drugs are marketed so heavily and they assign you a nurse ambassador to check on you! Humira has a bunch of lawsuits they settled, one in CA recently for 24 million, for illegal marketing and fraud (providing perks to doctors to prescribe this drug and not letting patients know that the ambassadors are paid by the pharma company who downplay side effects). You can do a search online.