Going on biologics or similar- Fear

[Msb]

Apologize for length and posted this also on Imuran discussion- 57 yr old male. Diagnosed w Crohns for 20yrs (1999). Otherwise great health and live a very active lifestyle. Prescribed Pentasa, been on ever since. Only symptom for 16 yrs was uncomfortable cramping 12 hr period maybe 2 or 3 times a year. Very manageable. In 2016 the cramping generally went away but started having lots of gastric noise and fatigue often with a slow period weight loss. GI recommended CT as not had any test since 1999. Test revealed had developed a fistula above crohns area in small intestine. Got second opinion from major university specialist. Was told should have surgery and then go on a biologic. As I felt generally good I freaked out over this. Decided I not doing any of this until I felt bad enough to go w surgery then hardcore drug. Again all manageable last 4 yrs. First of March last month developed a strange sharp pain in lower right of abdomen. Went in another Ct. Found I had abscess. General Physician put me in hospital that day. Several days in to drain then on antibiotics for several weeks. General, GI and Surgeon recommended surgery. Went in they removed 12 inches of bad area. Healed very fast last in few weeks and feeling fantastic now. No symptoms and eating like crazy. Last week GI I recommended remicade/Humira. I had same concerns about biologic and worried about Covid 19 effects while on drug (my job requires face to face with people). GI reversed and suggested Imuran would be better as I doing well so far and Imuran not as immune altering along w easy to take. Was excited after hearing this but surfing the net it appears side effects just as bad as Remicade or Humira. I have just as much fear based on what I am reading. I feel great but dont want to stick my head in the sand and ignore potential issues. Greatly appreciate any thoughts or recommendations. Thanks so much!

 

[my little penguin]

Being an adult with this disease I assume is very tough
My kiddo was dx at age 7
He is now 16
He has been on biologics since age 8
Remicade /humira and now Stelara.
All through grade school and now high school
Being inflamed during covid is not the best idea
They told us keep the inflammation down with meds
No extra illness extra for ds during the school years

International Group Offers Reassuring Guidance for Managing IBD Patients During COVID-19
David A. Johnson, MD
DISCLOSURES
April 27, 2020

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FS




This transcript has been edited for clarity.
Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.
Hello. I'm Dr David Johnson, professor of medicine and chief of gastroenterology at Eastern Virginia Medical School in Norfolk, Virginia.
Patients with inflammatory bowel disease (IBD) are often taking a variety of immunosuppressants and biologic therapies that can potentially complicate the immune system. This has led many of us to wonder what to do with these patients during the continued COVID-19 global pandemic. I'd therefore like to offer my kudos to the International Organization for the Study of Inflammatory Bowel Diseases (IOIBD) for their heroic effort of stepping up to answer this question for us in a new publication.

The IOIBD consists of approximately 80 physicians from 26 countries. When the IOIBD's annual meeting was postponed in mid-March due to COVID-19, the group quickly pivoted to hold two webinars to create consensus statements on the treatment of IBD during this pandemic. They established 76 statements during their first webinar. On the follow-up webinar, they applied a Delphi panel approach to identify 26 of these statements as appropriate, 19 as uncertain, and 31 as inappropriate. I want to highlight some of the guidance that this expert group has put together.
There is good news. The group reported that patients with IBD are not thought to be at an increased risk as it relates to the SARS-CoV-2 virus or the resulting COVID-19 disease. This is important because it is now recognized that this virus needs the angiotensin-converting enzyme 2 (ACE-2) to enter the cell. ACE-2 is found in the upper respiratory tract and also in the gastrointestinal tract, particularly in the small and large intestines. Despite that, this is not associated with an increased concern in patients with IBD.
The group also supported postponing any elective procedures at this time. That's intuitive and something we're now generally doing across the board.


For patients with IBD who are also positive for COVID-19, the group recommended withholding their medications for 2 weeks and then restarting when appropriate after symptom resolution. This is a general approach that we already employ when patients have infections.

What I'd consider the truly important "meat on the bone" of this guidance document related to medical therapy. The group recommended reducing or withdrawing steroids to proactively prevent the risk for SARS-CoV-2 infection. However, the group rated as "uncertain" the statement that patients receiving combination therapy with a biologic and an immunosuppressant should similarly have it removed or reduced to minimize the risk for infection. Certainly, if they do become infected, then it would be appropriate to remove an immune modulator.
We have a number of patients participating in ongoing clinical trials of IBD medications. The group stated that it was still appropriate for such patients to stay in these study protocols provided that they weren't positive for SARS-CoV-2 infection or COVID-19. They also stated that it was appropriate to discontinue the study treatment if a patient became positive for the virus, although it was a mixed recommendation with some disagreement from the reviewers.
How IBD Treatments May Interact With This Novel Virus
Another key message of this guidance document related to infusions and injections. The bottom line was that the group agreed that it was safe for patients to continue at an infusion center, if it had put in place appropriate SARS-CoV-2 and COVID-19 screening protocols. And obviously, the recommendation is to continue injections done at home.

The group noted that it is also particularly important to consider the half-life of the IBD medications we typically use. As a general rule, it takes about 5.5 biologic half-lives to clear the system or at least to get to low levels of detectable drug.

The variety of drugs we employ have considerably different half-life ranges. The approximate half-life is 7 days for thiopurines, 24 hours for corticosteroids, a quick 6 hours for methotrexate, and an even more rapid 3-6 hours for tofacitinib. The half-life is comparatively longer when you look at the injectable and infusion-based medications. The approximate half-life is 10-20 days for adalimumab, 7-12 days for infliximab, 19 days for ustekinumab, and 25 days for vedolizumab.

When you multiply those numbers of days by 5.5 times, you're talking about a very extended exposure. Therefore, stopping the medication doesn't necessarily change your immune response in a short period of time.

We can take this discussion a step further by considering recent data suggesting that a subgroup of patients with severe COVID-19 may experience a putative cytotoxic storm. These patients have been noted to have a hyperaccelerated inflammatory response, which occurs regardless of the level of viral load; simply having the virus present is enough to stimulate the response. This cytotoxic response results in a variety of upregulations, including white cells and migration factors, especially interferon-gamma, interleukin-2 and -6, and tumor necrosis factor alpha. Crucially, these are also targets for many of the IBD mitigation strategies we employ with our biologic and immunosuppressant therapies. It is therefore conceivable that there may even be some benefit to the medications that these patients may take.

At the moment, we can reassure our patients with IBD that they can stay the present course and continue their medications, with the obvious stipulation that they must apply the standard COVID-19 precautions.
We can also extend our kudos to this incredible international group for giving us excellent guidance, reassurance, and justification for the management of a very complex group of patients on biologics and immunosuppressive therapies. That's what leaders do in a time of crisis—they lead. Hopefully this overview of their work has provided you with good information to guide your decisions and discussions with patients.

I'm Dr David Johnson. Thanks for listening.

From
https://www.medscape.com/viewarticle/929323?src=wnl_edit_tpal&uac=185734DZ&impID=2362863&faf=1

 

[Delta_hippo]

There is also a website google covidibd that lists all known outcomes for crohns or uc patients with covid which is pretty reassuring.
But generally I think when doctors start talking about immune suppressant meds it's very tempting to look at everything and decide what you think will work best and be safest, the reality for some including me is that your body will decide what it will tolerate and what it will respond to and you will only find that out through trial and error.
Good luck. Keep up your vitamin c if you are around poorly people for work.

 

[Msb]

Thanks. Yes it looks like with everything w Crohns is trial and error as everybody is so different. The physicians even don't seem to have a full grasp on what is best.
The current blessing I have now is I don't feel bad, actually feel fantastic after this gut cut but the frustrating thing is Doctors are saying I need to go on something more than the 20 yrs of Pentasa I been taking. Thus in my mind I am battling I feel good, why take something that is going to put me at pandemic risk along w bevy of other possible awful side effects. If I felt bad I could understand or justify better. But despite feeling great I know I could start feeling negative Crohns effects anytime. Then if do go on a more potent drug, is the Imuran better option for me than the Humira/Remicade route. The not knowing for sure what to do is frustrating to say the least.

 

[my little penguin]

You needed surgery because despite feeling “ok” damage was on going on the inside due to inflammation
Cutting out the damage doesn’t stop the ongoing inflammation which was not prevented by Pentasa .
Your docs reviewed your case and want meds to prevent further damage
Waiting until you have to have more surgery has more risks since you can not live without a small intestine .
All drugs have possible side effects
Simple everyday drugs like infant Tylenol has a possible side effect such as death , liver failure and Steven Johnson syndrome
That said millions of babies are given infant Tylenol because the benefits far out weigh the risks
Biologics to treat crohns are the same
Yes there are potential side effects
But not guaranteed side effects
Having ongoing whole gut inflammation during covid puts you at higher risk since whole body inflammation is the bigger issue with covid

not mention damage once present can’t befixed
But inflammation can be reduced or eliminated to stop the damage from happening

some crohns folks feel horrid when inflammation is present
In your case inflammation seems to be going on with out signs you can feel
So meds are your only option at stopping inflammation

 

[my little penguin]

Cochran reports do not recommend Pentasa or 5 asa as monotherapy in crohns
Reason
Crohns attacks the entire thickness of the intestine
Pentasa only treats the top surface layer like a cream abd doesn’t work on the underlying tissue .

I get wanted to stay on the drug you “know “
Been there many times with Ds
But finding a med that actually treats the inflammation and stops it is the goal
Having nice pink healthy intestines is possible

 

[Helped and Hopeful]

I am new to this site (first post), but not to Crohn's. I was recently given my first infusion of Remicade to prevent surgery, after Azathioprine not being enough. Prolonged and high dose steroid use left me with severe osteoporosis and I am currently in convalescent care for having gotten 12 spinal fractures.

All I can say is that the Remicade worked after only a few days--and there is remarkable improvement. I've not had a medication work so quickly.

Was on Humira about ten years ago but had to come off due to adverse reactions. Tried Entyvio last year and it made me sick. Had a worse flare after my second infusion. Naturally, I assumed I couldn't do biologics, but my specialist said to keep trying, sometimes one will work when another won't.

Having had a diagnosis of Crohn's about twenty years ago, and having taken several immunosuppressants, I've learned that I don't seem to get sick on them. While I was flare-up free for about seven years and on no meds I did have the odd cold and flu. On the meds--none so far.

 

[Selisgotcrohns]

Apologize for length and posted this also on Imuran discussion- 57 yr old male. Diagnosed w Crohns for 20yrs (1999). Otherwise great health and live a very active lifestyle. Prescribed Pentasa, been on ever since. Only symptom for 16 yrs was uncomfortable cramping 12 hr period maybe 2 or 3 times a year. Very manageable. In 2016 the cramping generally went away but started having lots of gastric noise and fatigue often with a slow period weight loss. GI recommended CT as not had any test since 1999. Test revealed had developed a fistula above crohns area in small intestine. Got second opinion from major university specialist. Was told should have surgery and then go on a biologic. As I felt generally good I freaked out over this. Decided I not doing any of this until I felt bad enough to go w surgery then hardcore drug. Again all manageable last 4 yrs. First of March last month developed a strange sharp pain in lower right of abdomen. Went in another Ct. Found I had abscess. General Physician put me in hospital that day. Several days in to drain then on antibiotics for several weeks. General, GI and Surgeon recommended surgery. Went in they removed 12 inches of bad area. Healed very fast last in few weeks and feeling fantastic now. No symptoms and eating like crazy. Last week GI I recommended remicade/Humira. I had same concerns about biologic and worried about Covid 19 effects while on drug (my job requires face to face with people). GI reversed and suggested Imuran would be better as I doing well so far and Imuran not as immune altering along w easy to take. Was excited after hearing this but surfing the net it appears side effects just as bad as Remicade or Humira. I have just as much fear based on what I am reading. I feel great but dont want to stick my head in the sand and ignore potential issues. Greatly appreciate any thoughts or recommendations. Thanks so much!

Hi
So I have had crohns now for 20 years but never needed surgery. Never took hard biologics either. So last year I changed my diet to plant based with occasional fish. No meats whatsoever. And I found really good quality multivitamin-mineral and probiotics at an online only wellness company. After about 2 months I had no longer any kind of GI issues, like tummy aches or diarrhea or anything and of corse your body has to adjust to a new diet but it turns out it helped so much that I am not on any kind of meds. I used to be on Lialda and animas during flare ups, but now I completely took myself off it. I know it’s important with this disease to be under doctors care and advice, but I’m just saying the gut needs probiotics to regulate and heal the intestines lining. And a good clean diet will certainly boost the health as well. Try it? Good luck.

 

[Msb]

Thanks so much for the responses . Yes Clean diet sure can not hurt. Before surgery just really ate chicken and rice. Fortunately since my surgery a bit over a month ago to remove section of small intestine I have been feeling great. No stomach pains or fatigue. But basically just had some fatigue, gradual weight loss with occasional discomfort for years prior to the abscess that was found 2 months ago that sent me into the surgery noted above. Docs surprised I didn't have more problems over the years with stricture small intestine, fistula above and then abscess. . My crohns I felt was very manageable though a mental stressor always along with some discomfort times. Only taken Pentasa. Post surgery now Eating what I want/desire as I want to gain weight and its been enjoyable to eat things I hadn't in years. All been great other than some urgency to have bowel movement after eating something not as healthy as I probably should (but trying to add calories). I work out with an athletic daily routine and take supplements- B Complex, Fish Oil, L Glutamine, Curcumin/Turmeric, CBD oil and a non refrig probiotic. Always questioned whether there are better probiotics to take. Would like feedback and what folks are taking that they consider to help. My big question now is Docs are telling me I need to be taking the Imuran pills prescribed but I am hesitating for last few weeks since surgery due to feeling great now and other concerning issues. The Covid 19 issue has me very concerned as I am in a profession which requires I meet with the public face to face in their homes and other locations at times. Cant work from my home so got to be out in public. Seems off to be taking a drug that COULD make me more susceptible to viruses and especially this deadly one. I am scared stiff with the other POSSIBLE side effects of these drugs. Thought maybe adding immune boosting sups might help me avoid catching something but seeing taking immune boosting supplements may counter the Imuran benefits. Docs are telling me I must take the Imuran to ward off possible future complications even though I seem to have none now. What to do and I just cant find any answers which is driving me crazy. I hate being labeled unhealthy and this damn disease.

 

[Selisgotcrohns]

Thanks so much for the responses . Yes Clean diet sure can not hurt. Before surgery just really ate chicken and rice. Fortunately since my surgery a bit over a month ago to remove section of small intestine I have been feeling great. No stomach pains or fatigue. But basically just had some fatigue, gradual weight loss with occasional discomfort for years prior to the abscess that was found 2 months ago that sent me into the surgery noted above. Docs surprised I didn't have more problems over the years with stricture small intestine, fistula above and then abscess. . My crohns I felt was very manageable though a mental stressor always along with some discomfort times. Only taken Pentasa. Post surgery now Eating what I want/desire as I want to gain weight and its been enjoyable to eat things I hadn't in years. All been great other than some urgency to have bowel movement after eating something not as healthy as I probably should (but trying to add calories). I work out with an athletic daily routine and take supplements- B Complex, Fish Oil, L Glutamine, Curcumin/Turmeric, CBD oil and a non refrig probiotic. Always questioned whether there are better probiotics to take. Would like feedback and what folks are taking that they consider to help. My big question now is Docs are telling me I need to be taking the Imuran pills prescribed but I am hesitating for last few weeks since surgery due to feeling great now and other concerning issues. The Covid 19 issue has me very concerned as I am in a profession which requires I meet with the public face to face in their homes and other locations at times. Cant work from my home so got to be out in public. Seems off to be taking a drug that COULD make me more susceptible to viruses and especially this deadly one. I am scared stiff with the other POSSIBLE side effects of these drugs. Thought maybe adding immune boosting sups might help me avoid catching something but seeing taking immune boosting supplements may counter the Imuran benefits. Docs are telling me I must take the Imuran to ward off possible future complications even though I seem to have none now. What to do and I just cant find any answers which is driving me crazy. I hate being labeled unhealthy and this damn disease.

Wow I totally hear you! Honestly I never had surgery and though at the start of my first time diagnosis I had severe symptoms (frequent bowel movements, belly pain and bloody stools, weight loss) and prednisone and mesamalin) over the years the severity went down. Never had surgeries only colonoscopies and endoscopes. But I have stopped eating meat two years ago, it’s hard to buy organic fed, no hormon, no antibiotic containing beef, chicken etc. it’s expensive and as a maturing adult it’s just not necessary to eat animal products. I honestly saw improvements, no prolonged flare ups. My partner was also on board with the diet change. So we eat green leafy veggies, spinach and kale, Roots like beets ginger and turmeric mostly raw (blended in a drink) and due to this pandemic Vitamin C/ Zink combo in a high dose 1200 mg 2x day, also multi vitamin packs which are from the same wellness company As the C combo. Those are 2x a day which include a acid resistant probiotic in addition. If you are interested to find out more about the vitamins (I order them only online, they are unlike any other brands and there is nothing like it on the market) I would be happy to give you the infos.
so in addition on my diet plan I also eat pastas, fish mostly salmon, Potatoes, sweet potatoes, I can eat eggs, I do dairy free milk, I can eat nuts, blue berries, rice, beans, and meatless meat, like beyond burgers etc. I do moderate exercise, mainly walking.
since I started the vitamins a year ago and the diet change I have not had any flare ups. I have gained weight quiet a bit! If I can help another person and tell my story and what helped me, it would mean the world to me, because I know what it’s like with the struggles of this disease. I have tried many other products also. One other thing I made a change of is I got rid of all chemical cleaning products, they were making me sick also, like gave me head aches coughs and made me nauseas. I went all green plant based. From toothpaste to shampoo, lotion, dishwashing soap to wash detergent and cleaning products I have rid it because it further damaged my health. Why would I want that to continue! Crohns is the only chronic disease, i can and want to deal with, I don’t want more bad stuff to happen to me. I’m off any kind of biologicals, I’m not saying you or anyone should get off their meds or treatments, and always check with your doctor but maybe you can make changes to your diet and supplements, as I did, it might take a little bit but your body will adjust and feel better and hopefully you’ll have longer remission periods.

 

[Msb]

Update. -----Still not taken the Imuran yet. Been a little over month and a half now. I been feeling great overall since surgery for abscess and removing section of bad small intestine. Eating what I like, gaining some weight and bulking up muscle as I desperately wanted. Now I am getting the pounds/muscle back I need to start eating more for health as opposed to weight. Have developed a thrush like symptom on my tongue (white/yellowish discoloration). Was told this could come from taking antibiotics and/or symptom of folks with intestinal distress. General doc has me on medicated mouth rinse. Not cleared yet over two weeks. Has anyone had this symptom? Want to clear this first before jumping on the Imuran. Suppose its another excuse for me not to start the drug...

 

[Selisgotcrohns]

No idea, I hope you get that taken care of, with your tongue. I’m glad you are doing better though!

 

[Helped and Hopeful]

I have never had that with any of the medications I have been on, nor from the flare-ups. I do remember reading something about it, though.

 

[Kannassee]

It seems I have had Crohn's for the last 40 years at least .....without my knowledge ....or probably more since I am almost 60 now and always had weird things happening with my digestive system since I was a 5 year old kid.

I was finally diagnosed earlier this year after several blockages (they said they were caused by adhesions.....) when they continued a colonoscopy into the terminal ileum and found the classical Chrohns patches and a stricture that they could not traverse.....

What a shock!!.... after so many gastroenterologist visits during all these years, peritonitis, CT's and after a colostomy and ileostomy.....incredible.!!!
Whatever had my first calprotectin test and it was not so bad around 500.

I felt fine apart from the blockages, no diarrhea, no cramps etc etc since they took away my sigmoid colon 2 years ago after peritonitis (supposedly caused by diverticulitis) but the Dr. does not want to try the balloon thing with the stricture without reducing the inflammation first, so he tried to convince me to go with Remicade......so no Remicade.....no balloon treatmen for the stricture. I was really scared after reading the black box warnings for Remicade but I could not continue to live without eating fiber and with the anxiety of getting a blockage everytime I go to bed so I finally decided to try the Remicade.

This last Friday I had my second infusion but this week I have been feeling downhill, feeling bloated, lots of noises in my gut, dyspepsia, like in the old times before the sigmoid colon surgery. I hope its not related to the Remicade. At least no one seems to get worse with it.

Maybe its just that I had a lot of stress this last week and that coincidentally I had my first flare up in two years after surgery. I was really scared to get it but after reading so many stories here in this forum during these last 3 months I changed my mind.

 

[t-bone]

K,

Hope things are beginning to calm down for you.

These are challenging times, and if that wasn't enough, making tough decisions / beginning a new therapy can really take a toll on your balance.

Grandmother always used to say "the journey of a thousand miles begins with the first step"
... many of us here can re;late to how that first step feels like it is off a cliff, and that's a fact!

Beginning a new therapy can be a very daunting thing, and there may be a whole new set of challeneges
... so many different feeling inside as things seek a new balance ...

If you have any questions or concerns, please post them up
You don;t have to go it alone, and there are many folks on their own journey here that have much knowledge

You are now on a path to wellness, and things will get better

 

[Guerrero]

Dont think those medications, imuran or biologics, will dramatically change your life. It didnt change anything in my case, except having regular check ups (mainly blood exams) which is not that bad at the end...

We have to go on living normal lifes even with those medications. Most of the side effects are as rare as they are for classic otc drugs. Dont overthink about the consequences of taking those drugs. The main one is that you’ll be more under control than without.

 

[Kannassee]

Since I already took the plunge I stopped getting worried anymore, I know I WILL get better with Remicade or if that doesn't work with Entyvio, Stelera or another biologic!!! or even I could try maybe those other inmunemodulators or whatever they are called.

Its great that there are now all this new options available, since a few years ago there weren't many drugs to treat this condition apart from prednisone , sulfasalazine or mesalamine. I remember reading back then that since there were not many people with these conditions not a lot of drug companies were working on new drugs to treat them.

Even that calprotectin test was not here I think in the nineties, that's probably why I never got it back then.

Thanks a lot t-bone and guerrero for your posts.