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Biologic Decision

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Ulcerative Colitis
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/21/2020 8:51 PM (GMT -8)
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.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 11/22/2020 3:30 PM (GMT -8)
Welcome back! The covid-19 vaccine isn't live, and is fine for those on biologics.

As far as IBD meds and covid19 outcomes go, this site has the known results: https://covidibd.org/current-data/
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 11/22/2020 5:06 PM (GMT -8)
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)

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iPoop
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Joined : Aug 2012
Posts : 16428
Posted 11/23/2020 9:44 AM (GMT -8)
Yes, the data does pique a lot of questions which I wish I had answers to.

90 percent topical, anti-inflammatory Mesalamine isn't protective against nor should it worsen covid-19. It's pretty strange and not sure if other health conditions explain it.

The biologics help suppress the immune systems dangerous “cytokine storm” associated with severe COVID-19 that results in lots of lung and other tissue damage. Could be helpful against severe, hospitalized covid-19. It's being studied. Several ongoing studies are recruiting patients to assess the efficacy and safety of biologics (NCT04344249 and NCT04425538) and small molecules (like xeljanz) (NCT04373044, NCT04346147, and NCT04362943) for COVID-19 treatment and will allow us to understand if these drugs can be used in this setting.

As far as IBD meds and covid19 goes, steroids seem to increase the risks of hospitalization a lot. So more caution is due when on them.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1848
Posted 11/23/2020 1:37 PM (GMT -8)
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)

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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/24/2020 9:24 AM (GMT -8)
I wanted to add that I am 73 years old and wondering if a biologic would do more harm than good??
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5871
Posted 11/24/2020 5:48 PM (GMT -8)
EnjoyGolf, what med(s) did you take during your 2-yr remission? / Old Hat (40 yrs with left-sided UC; in remission taking Colazal)
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 11/24/2020 5:59 PM (GMT -8)
Enjoy golf, how severe are your symptoms right now? Have you seen any data on age and biologics? I think the clinical trials are on a younger population unfortunately. I found one article on older adults and biologics: https://www.cghjournal.org/article/S1542-3565(19)30005-9/pdf

The covid data is showing that folks on steroids have worse outcomes though, not patients on biologics. It's riskier to be on predisone right now.

If you haven't done so already, you can try doubling the probiotics you are taking and experimenting with one of the evidence-based diets for UC, including AID-IBD diet or SCD. I personally find that without diet I can't get out of a flare, meds are not enough on their own. Diet takes longer to help for some and may be too late if the flare is more severe. I do think diet works better when the flare is mild to moderate.

Post Edited (Jane974) : 11/24/2020 7:07:17 PM (GMT-7)

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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/24/2020 7:50 PM (GMT -8)
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.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/24/2020 7:52 PM (GMT -8)
Jane 974, might look into diet. Never have tried before
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5871
Posted 11/24/2020 11:24 PM (GMT -8)
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
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/25/2020 5:01 AM (GMT -8)
Old Hat
Before the last flare I was on Lialda 4 tabs daily and rowasa every other day. He did suggest a biologic (Remicaid) but I did not agree due to my age, My choice. I did meet with a surgeon but the 80 mg of Pred did finally clear my flare up.
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iPoop
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Joined : Aug 2012
Posts : 16428
Posted 11/25/2020 7:02 AM (GMT -8)
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).
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limey
Regular Member
Joined : Sep 2016
Posts : 191
Posted 11/28/2020 10:51 AM (GMT -8)
Im 80 years of age and have been on Xeljanz for almost 2 years now with no problems to report.

enjoygolf said...
I wanted to add that I am 73 years old and wondering if a biologic would do more harm than good??

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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 11/29/2020 6:34 PM (GMT -8)
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.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/29/2020 6:43 PM (GMT -8)
Jane974-Thanks for the update. Have increased the probiotics and green tea. Will give it a few weeks and if no improvement will see my GI (he is very strong on Biologics). I do know that after my last flare I will not use pred, the 80 mg was rough.
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 11/29/2020 7:43 PM (GMT -8)
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?
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 11/30/2020 7:18 PM (GMT -8)
Update-I have an appointment with my GI this Friday. Looks like his practice is also involved with the Eco-Reset Trial. Might be a possibility??
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 11/30/2020 9:33 PM (GMT -8)
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.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 12/2/2020 1:46 PM (GMT -8)
Does switching to a Biologic allow you to discontinue Lialda and Rowasa or do you continue taking those also?
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 12/2/2020 5:20 PM (GMT -8)
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)

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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16428
Posted 12/3/2020 5:42 PM (GMT -8)
If a biologic gets you in a sustained remission, then you'll likely taper off of the mesalamine. As usually gasteroenterologists keep us on only the strongest med for long term maintenance treatment.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 12/4/2020 8:12 AM (GMT -8)
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.
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enjoygolf
Regular Member
Joined : Jan 2012
Posts : 230
Posted 12/4/2020 8:34 AM (GMT -8)
How much does this drug cost on Part D Medicare?? I ran it on my current insurance and it looks like the loading dose is $21,000 and the annual maintenance is $42,000. Wow
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 12/4/2020 10:10 AM (GMT -8)
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.
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