Ustekinumab vs tnf

[westernbuddy]

I think I have to start my first biologic soon.

Was offered azathioprine combined infliximab.

However Ustekinumab aka has caught my eye.

Like the fact you can inject at home, side effects may be worse.

But can anybody advise what this lady is saying in this you tube video



Should tnf such as infliximab be tried first or should a jak such as Ustekinumab be tried first.


Things are changing.

Regarding Ustekinumab does it also change the dna like azathioprine and cause skin cancer.

http://news.bbc.co.uk/1/hi/health/4248356.stm

 

[Pangolin]

It's only a matter of time before the most popular first-line biologics become ustekinumab for effectiveness (and better safety data than anti-TNFs) and vedolizumab for safety (while still having decent effectiveness). This is the direction all of the most recent data is pointing.

 

[my little penguin]

Ustekinumab(aka Stelara) is an IL-12 /IL-23 blocker
It has a low rate of infection
But the mechanism can take 6-8 months to work vs
Remicade which is anti tnf (6 weeks to work )
Different part of the immune system

aza /imuran /6-mp are all linked to a higher Rate of lymphoma so they are no longer used in pediatric ibd especially young males (t-cell lymphoma is fatal )
JAK inhibitors are pills not injections
These are currently used in rheumatoid arthritis
Some are approved for UC
But I am not aware of any approved for crohns yet
Some have warnings of intestinal perforation and making crohns worse ….?.?.

my child has been on Stelara since 2017
No real side effects
Easy to give on the go or at home
Except it must stay refrigerated and is only good for 4 hours at room temp

your biggest hurdle will be insurance
Most require failure of lower level (less effective/cheaper drugs ) like 5asa, immunosuppressants (mtx /aza ) and then they approve biologics

even in biologics
Most require failure of humira and/or remicade prior to trying /approving Stelara due to the outrageous cost (small car anyone for one shot )

 

[westernbuddy]

Thanks for looking at that video pangolin, im on pred and keep zoneing out on it lol, i thought she said this should be the new way forward stelara over infleximab first, and more new drugs are coming out that are going to have similar saftey profiles.

Im in the uk so stelara aka Ustekinumab is free of charge on the nhs, we are very lucky, but if you do wish to go private its £9000 GBP a year or around $12,000 per year
I have one friend on it she is doing best ever, however as we have brexit and she works in the eu and uk there were some issues with costs e.t.c

It does not look a 100% perfect drug, but looks like its much safer than others on the market, nice in the fact it can be taken at home, and as a bonus antibodies may not form, so if it works it could be a nice safe reliable drug for many years of use.

Would be interested to know how everyone is doing on it?

Side effects
Restriction in diet
how many years on it
Any minor or major flairs when on it
Does is have uv tanning warnings, or anyone have any photosensitivity issues with it?

 

[my little penguin]

My kiddo started stelara at age 13 -now 17 has been on Stelara for 4 years
Every 4 weeks at 90 mg
No issues
No diet restrictions
Gi likes all her patients with ibd on Mediterranean style diet (but Ds is allergic to fish and tree nuts so … we do the best we can and he is a teenager —Aka pizza etc..)
It kept his fecal cal below 15 (undetectable) for 4 years
They tried spacing to 6 weeks and Fecal cal went up
So back to 4 weeks
Cant speak about sun issues since he takes methotrexate as well (which requires sun protection) and used acne creams which also require sun protection

 

[westernbuddy]

Oh i like a pizza too : )

How long has he been on every 4 weeks at 90mg will they try to space it out to every six weeks again?

As its slow to start, i think they should maybe do the introduction a bit more like infleximab 3 infusions over say six weeks to really get it going maybe.

 

[Jo-mom]

I watched the video, and it was very interesting. It's over 4 years old so there must be more studies since then. My take was different than Pangolin - basically I understood that typically TNF are the first bioligic to be introduced in typical IBD world, but from what I understood, careful review of each patient should be had before considering what biologic to be given first. Yes, some biologics (ie Stelara) have better safety data, however, it might not always be the choice - it really depends on the patient, but from what I understood, some patients sould start with the non-TNF's and would have a better chance of remission than if they began on TNF's first and failed same.

 

[westernbuddy]

I think also from my further research that in the near future they will be able to test and work out what biologic will work before its even given to a pateint, no guessing and waiting to see results tailored medicine.

Plus there are even more biologics for crohns is phase 3 at the moment.

This will really reduce damage and avoid surgery, the faster your on the most suscesfull medicine the less damage is done. i think even in the next 5 years there will be a lot of progression in the crohns world.

 

[my little penguin]

He has been on every 4 weeks since March 2018
They just tried to space it out a few weeks ago
They probably will not try it again
He take Stelara to control his crohns and juvenile arthritis. Stelara is not the best for arthritis which is why it requires a higher frequency
But options are extremely limited for drugs that cover crohns and arthritis when one is still under 18.

he had an allergic to remicade after 8 months .
Humira stopped working after 5 years .

 

[Pangolin]

I can't find the video right now, but I saw one recently in which a doctor gave a presentation with some of the most recent data about the various biologics, and the audience was asked before and after the presentation which biologic they would use first in a couple of cases. Many of the doctors in the audience switched from choosing anti-TNF as a first line treatment to ustekinumab as a first-line treatment after seeing the new data.

The net difference seems to be that ustekinumab results in remission is slightly more patients than anti-TNF while having a substantially better safety profile. I think it's clear that over time we'll be seeing anti-TNF slip away from the top first line spot as more doctors catch up.

 

[westernbuddy]

We need it, Im sure im not alone in being told about a medicine by the hospital then going on google after and thinking wow this is as bad as crohns disease, a new medicine is often like the worry of a whole new diagnosis.

Yes a medicine may fix the crohns fix the inflmation stop crohns surgey, but the adverage crohns patient needs 60 years of medicine, some drugs are classed litrally as toxic such as azathioprine, not only having crohns but battering the body with toxic meds i think has a chance of paying its toll on some, welll it does pay its toll we know this.

If you can find that video again that would be great.

 

[Delta_hippo]

Echo everything said so far. I have been in ustekinumab since November 2020, only new side effect is some weird skin stuff, a bit of eczema here and there and some patches of psoriasis. GI said that it was initially developed as a psoriasis drug so a few unlucky people get new skin issues on it as some kind of perverse outcome. It has done great things for the Crohn’s and hope will continue to do so. The injections at home are much easier than trekking to hospital for an infusion especially now our deranged government are ending all social distancing/ mask restrictions and anticipating some mass covid outbreak. It’s all going to be fine because most of us have had jabs, some only one, some none, mainly Astra Zeneca which we don’t know if it works against delta, the government accept deaths will increase but we must learn to live with it.
I digress.
Ustekinumab is the best drug I have been on. Vedolizumab had fewer side effects but couldn’t get the inflammation under control. Azathioprine, 6mp and infliximab all made me feel very ill.
Good luck whatever you choose.

 

[westernbuddy]

Yes I agree I was watching the news thinking oh no why let everyone take there masks off, literally it's only been a couple of months without major covid deaths watch and wait it hurts nobody to wear a mask on a train bus public toilet or hospital e.t.c while we get some more data, wearing a mask in these places has 0 effect on the economy and may only help.

How long did ustekinumab take to work for you Delta_hippo ? Were you in a bad way when you started ?

And regarding azathioprine and infliximab were you on these combined ?

 

[Delta_hippo]

I was quite bad late last year, severe anaemia, fecal calprotectin off the charts, no appetite, losing weight quite quickly, on and off fever, high pulse, low blood pressure, feeling generally pretty poorly (shaky and lightheaded and hard to concentrate). They didn’t want to admit as hospitals all crammed with covid at the time so I got switched to stelara, iron tablets, budesonide and flagyl. Slowly felt better over a few weeks. A good bit better by Christmas for sure. Next FCP test was April and inflammation had dropped to 130 or 140, something like that, the lowest it has been in the 4 years I’ve had Crohn’s.
Didn’t take aza and infliximab together I did prednisolone (didn’t work) then aza (made me ill) then 6mp (kept getting ill) then just budesonide (crp skyrocketed) then infliximab (crp dropped like a stone but couldn’t tolerate the drug and stopped after third infusion) then vedolizumab and double vedolizumab (couldn’t control inflammation) then takes us to ustekinumab.

 

[westernbuddy]

Interesting, so it sounds like you were in quite a bad flair finding it hard to operate on a day to day basis.

And do you feel its got you in a really good remission now ?
How about food has it improved the foods you can eat without issues ?

 

[Pangolin]

I still can't find the video, but there's a good chance they were discussing this data: https://academic.oup.com/ecco-jcc/article/15/Supplement_1/S001/6286068

 

[Scipio]

I've been on ustekinumab (Stelara) for three and half years now, and my experience has been very positive. It was my first biologic and only, so I have no personal experience with anti-TNFs to compare it to. I take 90 mg every 8 weeks and my Crohn's is very well controlled by it.

In answer to your questions:

Side effects - None so far
Restriction in diet - None so far
how many years on it - 3.5
Any minor or major flairs when on it - No
Does is have uv tanning warnings, or anyone have any photosensitivity issues with it? - It has photosentivity warnings on it, but since I have fair skin to begin with I was already avoiding sun, wearing long pants, long sleeves, and hats, and using sun block for years before I started on the Stelara. so there was no adjustment for me. But if you are currently a bigtime sun tanner Stelara may cramp your style.

BTW: The doc in the video, Dr. Marla Dubinsky, is a very famous IBD doc - one of the world leaders. She was previously here in southern California at Cedars-Sinai Hosptial in LA, but some years ago she moved to Mt. Sinai in New York. She is primarily a pediatric GI specializing in IBD, but I think maybe she treats some adults too, or at least she enrolls adult IBD patients in her research studies.

 

[westernbuddy]

Oh your in california scipio, very nice.

I'm in the uk most of the year it's grey wet cold and rain, soon as a rare sunny day comes us British tend to go mad for it and it feels so nice when you don't see it often.

Do you not ever go swimming outdoor pool say in california ?

I'd be doing that every day in a location like that, but at the same time probably missing half my body with sunblock and getting myself in trouble.

 

[Scipio]

I'm in the uk most of the year it's grey wet cold and rain, soon as a rare sunny day comes us British tend to go mad for it and it feels so nice when you don't see it often.

Do you not ever go swimming outdoor pool say in california ?

I don't have a pool at my house, but since I live in a coastal town I do go to the beach sometimes. But I usually go in the late afternoon and stay on into the evening when UV exposure is much less of an issue. Even then I still wear hats, long sleeves, and sun block while the sun is still up.

All my ancestors immigrated from the UK to the US in the 17th through 19th centuries (depending on which ancestor you are talking about), so that leaves me living under an intense and relentless California sun with a pale complexion adapted for the gray, wet, cold, and rain of England - not a good combination. When I was a teenager I was very envious of my friends who could get good tans every summer, but I've long since learned that it is not in my interest to try to imitate them. Then any additional sun sensistivity induced by Stelara therapy just makes my staying out of the sun all the more necessary.

 

[westernbuddy]

It sounds very wise to me what you do, BoB Marley died of skin cancer and often people think if they have darker skin they are protected.

But i guess the thing with stelara is it may adjust dna like azathioprine does so the body does not have a strong defence agaist uva rays like the average human does, that is not going to be unkown for many years after yet. must have took them 50 years to realise azathioprine was adjusting peoples dna and they were getting skin cancer even many years after not taking the drug.

That sounds a very lovely eveing on the beach relaxing as the cool air comes in.

Stelara i think may be the best crohns drug to date, if it works in that patient, the least side effects and being able to inject at home rather than spend a day having infusions, these small points are a huge deal i think.

I have never had any medication in my 20 years of crohns, so i cant imagine what it would be like to be able to eat anything as i wish, i could not even do a simple thing such as eat around a friends house as food has to be cooked a certain way in order to keep the crohns alien within happy.

 

[Delta_hippo]

Interesting, so it sounds like you were in quite a bad flair finding it hard to operate on a day to day basis.

And do you feel its got you in a really good remission now ?
How about food has it improved the foods you can eat without issues ?

Sorry for slow reply I am still a shadow of my pre-Crohn’s self for example back aged 30 I was climbing Kilimanjaro, few weeks ago it was the mother in laws 80th and I had to rest on the short walk and picnic we had to celebrate her birthday.
But I measure life by whether I can do what is essential, which is work enough to pay the mortgage and bills and spend some quality time with my family. On that measure I am functioning which is better than it has been - in the last few years there has been a lot of time off sick/ having to stay in bed and in worst cases hospital trips.
Food wise I am following ibd-aid fairly closely and have been gluten free for a good couple of years. I don’t know if it helps or not or if I would get worse if I ate whatever.
I don’t know if stelara will get me better but as long as it keeps me going and out of hospital that is a huge win.
Life’s funny. So glad I climbed that damn mountain when I could. I never saw this curve ball coming. It must be so hard on the youngsters who have to wrestle this monster from an early age.

 

[Pilgrim]

The kids who wrestle it early don't plan to climb Kilimanjaro, at least mine doesn't. But she does plan a life with beauty built in. She wants 2 cats and loves to sketch birds and is working on learning piano and a second language. Could be worse! She's in month 4 of Stelara. Hope it starts kicking Crohn's soon.

 

[my little penguin]

@Delta_hippo
Wrestling it early here for Ds was 7
It’s been 10 years in a few weeks
Skiing ,snowboarding, competitive swimming, orchestra, plus two musical instruments, school, friends and of course video games .
Next adventure college

Kids who are dx little don’t miss out or make do
They don’t know what’s it’s like to not have crohns
So they just do everything their friends are doing
Occasionally taking breaks due to a flare or med change but that is rarely
Biologics such as humira and now Stelara are the reason my kiddo doesn’t miss out .

 

[Pilgrim]

I think it's definitely harder for people who get diagnosed as young adults or adults.

 

[Delta_hippo]

@Delta_hippo
Wrestling it early here for Ds was 7
It’s been 10 years in a few weeks
Skiing ,snowboarding, competitive swimming, orchestra, plus two musical instruments, school, friends and of course video games .
Next adventure college

Kids who are dx little don’t miss out or make do
They don’t know what’s it’s like to not have crohns
So they just do everything their friends are doing
Occasionally taking breaks due to a flare or med change but that is rarely
Biologics such as humira and now Stelara are the reason my kiddo doesn’t miss out .

Agreed, I am grateful for the medical advances every day, and for the people who dedicate their careers to trying to find better solutions for us all