Multiple IBD patients have CORVID19, 1 doing well despite Humira + 6MP

My doctor said he requires a colonoscopy before he puts me on Entyvio, however, they just called to cancel my colonoscopy. They said no more "elective" procedures for the foreseeable future due to Covid. They also told me to stay on prednisone until I start Entyvio.
I hope he moves ahead with the Entyvio even without a colonoscopy. Not sure why it is a requirement. I obviously don't want to stay on prednisone indefinitely, especially since I am in remission at the moment.

C_G_K said...
My doctor said he requires a colonoscopy before he puts me on Entyvio, however, they just called to cancel my colonoscopy. They said no more "elective" procedures for the foreseeable future due to Covid. They also told me to stay on prednisone until I start Entyvio.
I hope he moves ahead with the Entyvio even without a colonoscopy. Not sure why it is a requirement. I obviously don't want to stay on prednisone indefinitely, especially since I am in remission at the moment.

Aargh how frustrating. I was scoped before my first biologic (remicade) but mainly because my symptoms and calprotectin didn't match each other...after that they switched me to entyvio without a scope. It's not great to stay on pred when you don't have to :'(

I was going to switch to Penn State Hershey Medical Center a year or so ago since they are a big University teaching hospital with a large IBD department, but one of the biggest reasons I didn't is that they are too rigid in following their "protocols" instead of treating each individual according to the patient's needs. One thing I know for sure about this disease is that what works for one may not work for another and I did not want to have to follow rules that may not be appropriate for me just because of protocols.

I hope they waive their requirement for you CGK ... no way is it better for you to be on prednisone indefinitely instead of switching you to Entyvio without their protocol scope!

I know this is off topic for this thread somewhat, but if anyone ever doubted the risk of steroid use, especially long term, they should read this:

https://www.ncbi.nlm.nih.gov/books/nbk279156/

It gets a bit technical at times, but is really thorough and detailed.

Biologics get a bum rap sometimes, however the alternatives are often way worse, especially prednisone. There is really no safe dose of pred, even 7.5 and 5 have high risks over time. I am currently at 7 even though they wanted me to stay at 10 mg. I have no symptoms at this low dose, so it seems pointless to stay at this dose. I am so tempted to taper off totally. I know my U.C. enough to know when I am in a solid remission.

Well I'm glad everyone who commented agrees that they should just give me the entyvio and waive the colonoscopy for now. My G.I. doc is going to call me tomorrow. I'll see what he says but he is old school.

Have you ever been driving down the road, and you notice something that could be dangerous, like an erratic driver, or an unstable load in a truck? You become so fixated on that that you almost miss something like a red light or someone stopping suddenly in front of you?

Yes Covid is bad and we need to keep an eye on it, but destroying our economy and ending up in a economic depression would likely be even more devastating overall. A lot of people, probably millions, are going to lose their jobs and their health insurance if that happens. That's a disaster for those of us with IBD. If our economy shrinks by 20 or 30%, how are we going to pay for things like social services and healthcare?

I don't like Trump personally, but I understand his responsibility to balance our Covid response with keeping our economy viable too.

iPoop said...

ks1905 said...
It is in Dr Rubins tweet (4 tweets down in the thread)

Correct. Here's a direct link: https://mobile.twitter.com/ibdmd/status/1239377123711823872

Furthermore:

The Chinese study of corvid19 and humira biosimilar
http://www.chictr.org.cn/showprojen.aspx?proj=49889

What's a cytokine storm in influenza?
https://www.nature.com/articles/cmi201574

Hi people, I am not a specialist on this but a person who has psoriatic arthritis. I was many years on Humira and two years ago switched to apremilast (Otezla). Intuitively, i figured out that covid-19 does not kill but what kills is the extraimmune response in the lungs or other organs. This is like what my condition does. That is why tylenol or even ibuprohen will not bring the fever down, i have to reduce inflammation response. Te same is with finding a treatment for coronavirus people at the stage of their inflammation in the lungs. I started asking wjether my meds could have a side effect of helping against this pandemic. And last weeks i discovered that Chines are already looking at it.

So i stopped calling myself immune challanged against this virus but rather someone who may be somewhat protected against the inflammation in the lungs should i get it.

Is there a way to,learn more about this, am i correct, is Otezla as good a TNF blocker as adulimbad? I would be willing to be part of a trial or research or at least be monitored should i het infected. I am Czech-American living now in a lock down in Prague. Inteach philosophy.

There are many questions i have but my microbiology level is self-taught.

In have also practised intermitent fasting and take NMN (NAD predursor) and Berberin to boost my immunity. But reversing aging makes little sense if we succumb to coronavirus.

I do not have a don not wish for the novel virus, but i


I have removed your email address as the administrator prefers we do not give out personal information in the forums. This is to protect your privacy. However, you can put your email address in your profile, only members can see it there. Thanks.

Post Edited By Moderator (straydog) : 3/24/2020 4:06:05 PM (GMT-6)

I had to remove several overtly political posts. Keep it on topic please or it will be locked.

C_G_K said...
It seems like they are focusing on these 4 treatments because they have been deemed the most promising.
https://www.sciencemag.org/news/2020/03/who-launches-global-megatrial-four-most-promising-coronavirus-treatments

There are hundreds of other trials going on for Covid-19 treatments, some of them are anti-TNF, some JAK inhibitors.

Since they are just starting I believe it would be hard to get much information about them.

There is some info here
https://www.cebm.net/oxford-covid-19/covid-19-registered-trials-and-analysis/

——

Anti-TNF are those in meds like Humira and Otezla.

After Polish Solidarnost, there is now Solidarity world wide mega push for cure. It is easy for any doctor world wide to register into a trial status with ongoing patients. This is the human race at its best. And yes, my meds or biological compounds used in them are one of the venues to cure. The other are also HIV cocktails (yes, the irony of it all, what can protect from this virus is that someone sexually hyperactive, past and future **********s who take preventive HIV medications all over Asia, and perhaps would not now die of coronavirus). Also from Asia, tested are being drugs against malaria and dengue fever.

This is all very promising for the world. I find the scientific effort and the Solidarity push by WHO the most impressive about the human race. The politicians and business people are often showing the lowest moral and rational character, they oft stand in the way of solutions, though we need a good government and as much economic solidarity as there is in the scientific community.

On Otezla 30 mg twice daily for psoriatic arthritis, switched from Humira because the pill form is si ply easier to live with and travel. No depression, no side effects, no need for special liver and blood quarterlies, no danger of getting cancer side effects as with other biologics, and now perhaps secondary protection against covid-19 inflammation storm if infected by coronavirus.

Post Edited (BeranAries) : 3/24/2020 11:30:01 PM (GMT-6)

C_G_K said...
Yes I agree. Very happy to see the WHO getting involved as they are.

The thing is, as NYC is probably going to find out soon, relying on ICU beds and ventilators won't work, especially since they have 3000 ICU beds for a city of 10,000,000 people. Even though a small percentage get that sick, just the sheer numbers will create enough people to overwhelm the system.

There is a worldwide shortage of ventilators, and for those of us in the United States, we don't even manufacture them on our own soil (except for a few specialty companies). Almost all are manufactured overseas which we have no control over.

Bottom line is we need a cure in the form of a drug and we need it fast, or there will be unnecessary deaths because of a shortage of ventilators and medical staff in areas that become hot spots.

Yes NYC needs 30,000 ventilators.

I am in a lock down in Prague, now going in 2nd week, we try to avoid exponential growth lime in Italy and Spain. Everything is shut down except food, pharmacy, gas stations, electronics. All events cancelled, must wear a mask everywhere. Movement of persons restricted except job, doctor, food. It seems to work reducing the growth.

Czech students printed on 3D printer a ventilator model, it will be produced. A company in Brno ,invented a mask tha5 kills the virus upin entry, it will,be produced and out innApril, can be reused. Jelinek Slivovice is making now alcohol cleaners,instead. If a small country of 10 mil can mobilize, the US should,too.

My rheumatologist in Prague just confirmed that it is advisable to continue in Immune suppressive care for psoriatic arthritis as those meds also work against inflammation caused by covid-19. TNF blocker in Humira and Otezla, e.g. She also mentioned that Palenquil has worked, though it is used for other conditions.

One is susceptible to the virus more than others but with meds in the body is also resistant to the inflammation resulting from the infection. Irony,maybe. But also help for others too.

I just went through something odd and still don't know if it was a flare or virus. 2 days of mild cramps followed by 2 days of strong cramps with mucus. On the fourth day I was vomiting throughout the day. Felt more like UC with soreness in my usual areas minus the rectal pressure and urgency. I was incredibly thirsty and had terrible lower back pain.

All doctors here are doing video conference only. Mine was concerned because another day of vomiting and I would end up in ER for fluids and blood work. Our hospitals are full of COVID patients right now. He also didn't want me on any meds other than mesalamine due to immune suppression fears. Luckily I've turned a corner so should be ok. He didn't mention biologics specifically but I got the feeling he didn't want to take that risk at this time.