Exciting new vedolizumab injections!

[valleysangel92]

Hi everyone

I've been on vedolizumab infusions for around 4 years with great success, but recently we were really concerned I'd have to stop treatment because my veins are so badly damaged from years of IVs. We were also concerned about me having trouble getting to appointments due to the current situation with covid (I'm not allowed on public transport).

In June this year, my team told me about exciting new vedolizumab injections that they were going to be offering some patients at my hospital. In August, they told me I was going to be the first to get them!

The injections are the same medication as the infusions, just a different dose, and are subcutaneous so can be self administered. I have now had 4 injections, they are every 2 weeks and my first one was 8 weeks after my last infusion. I'm pleased to report they are less painful than an IV and of course avoid the risk of being in a hospital at the moment. I've also noticed my symptoms have improved because I'm not crashing every 7 weeks like I was on the infusions.

The injections are now being rolled out UK wide and will hopefully be available in the wider world in the near future .

 

[my little penguin]

That is wonderful news .
Injections at home are soooo much easier on you and your veins
Ds was on humira injections for 5 years and Stelara injections now for the past three years
You can travel more (once covid is contained )
That’s great !!!

 

[valleysangel92]

I was like a child at Christmas when my first ones were delivered. We're already planning a trip next October if it's safe, the possibilities are so exciting and it secures this treatment for as long as I can tolerate it. I honestly think this is life changing for so many patients.

 

[GI Jane]

I'm supposed to start back on vedo soon.....so going to ask about this.....thanks.

 

[Maya142]

That’s great!! I have also heard that they are making a subcutaneous form of Remicade, which would be so much more convenient.
My daughter’s veins are a disaster after so many years of blood draws, IVs from infusions, surgeries and hospitalizations. The specialized IV team couldn’t even get an IV in using ultrasound. So she ended up with a port, which we were dreading but is very convenient.

 

[Jbungie]

I’ve seen the Remicade sub q injection pens posted by a few people in the UK. I wonder how long before they make it over here?

 

[valleysangel92]

I have now done over 20 injections and I am pleased to report there have been no issues with injecting or with side effects. The injections are a little painful, and I've bruised myself a couple of times but nothing drastic or scary. I know some people in the UK have been reluctant to take them either because of fear of self injecting or because they are worried that they will loose contact with their IBD teams. All I can say is that yes the injections sting, but they are less painful than an IV, they are super easy to use and its over in 30 seconds. Usually you can't even see where you.ve injected after 5 minutes. I have still been getting frequent blood tests, I just go to my GP or to the local hospital every 8-12 weeks which the IBD team and my GP monitor and alert me of any issues.

I am currently experiencing quite a nasty flare up, but I don't think this is anything to do with switching to injections. I have never been in full remission and have always had some symptoms which can flare up at the drop of a hat so I think this was just inevitable. If anything being on the injections has probably kept the flare at bay for longer as I have had injections every 2 weeks, meaning I almost get a "reset" every two weeks and for a while this was reducing symptoms. I am currently waiting for contact from my IBD consultant and hope that I will just need a short course of steroids and will be able to continue the injections as planned.

 

[westernbuddy]

That puts me of biologics reding this, they come with a lot of side effects, and describing your symptoms im not sure if they maintain remission any different to getting the correct foods and nutrition and diet including belnding liquid formulas e.t.c

Think even doctors debate if biologics do much in mainting remission, they think biologics may have cut surgery rates by about 20% but that is not huge huge, but how many other side effects and maligancies have they caused aside from crohns, do the benifits out weigh the risks.

Im all for medication, i just think crohns medication needs a lot of work, improve efficiancy and reduce side effects, we all deserve some good luck and a nice quality of life, and the oppurtunity to be able to go and eat with friends and family in any resturant we wish.

 

[valleysangel92]

That puts me of biologics reding this, they come with a lot of side effects, and describing your symptoms im not sure if they maintain remission any different to getting the correct foods and nutrition and diet including belnding liquid formulas e.t.c

Think even doctors debate if biologics do much in mainting remission, they think biologics may have cut surgery rates by about 20% but that is not huge huge, but how many other side effects and maligancies have they caused aside from crohns, do the benifits out weigh the risks.

Im all for medication, i just think crohns medication needs a lot of work, improve efficiancy and reduce side effects, we all deserve some good luck and a nice quality of life, and the oppurtunity to be able to go and eat with friends and family in any resturant we wish.

I understand your hesitancy, but unfortunately for a lot of us just changing our diets won't cut it. Before I started vedolizumab, I had 10 hospital admissions in two years, all at least a week long, I did EEN, very low fibre/low res diets, I did azathioprine, mercaptopurine, surgery, NMB with IV nutrition etc and unfortunately none of it really worked for me.

Vedolizumab changed my life, I may not be in remission, but my disease is exceptionally hard to totally control. Since starting the vedolizumab, I have maintained a healthy weight for the first time in my whole life, I have less nutrient deficiencies, I have much more of an appetite and even when I struggle to eat I don't loose weight as quickly. I have only been admitted to hospital once since starting Vedo, and that was because I had surgery for another issue that caused my Crohn's to flare. When I have had bigger flare ups, they have been very easy to get back under control and I don't end up requiring hospital stays.

I have already had one surgery, meaning that there is approximately a 75% chance of needing another. 20% reduction in that risk may not sound like much but it means I only have a 55% chance of more surgery, a reduction I'm very happy to have. Every biologic differs but vedolizumab has an excellent long term safety profile and its actually very rare for anything really serious to go wrong. The biggest risk for most is the immune suppression. The risks of poorly managed Crohn's disease can be really serious and include bowel perforation, serious malnutrition and even a higher risk of developing cancer.

I agree that we need more reliable treatments, and of course what works for one person won't work for everyone, but progress is being made all the time and although the current medications aren't perfect they're still significantly better than what was available 20-30 years ago.

 

[westernbuddy]

Yes I get what your saying 50% of people who stop biologics relapse so it is not to be messed with lightly by any means.

And I find it frustrating when companies try and sell diets for crohns as I belive there is not one particular set diet its individual I think.

It sure is a puzzle and a bugger this disease in multiple ways also.

 

[Guerrero]

I started the self injection version of entyvio too. It’s great , it saves a lot of time for us patients and for doctors and nurses.

 

[trebor-HI]

In the United States, is Entyvio still administered by infusion only?

 

[Scipio]

In the United States, is Entyvio still administered by infusion only?

Also. be aware that in the US if you are on Medicare or any other federally-funded insurance, if and when the drug moves from infusion to self injection it also moves from Medicare Part B coverage to Part D, which is likely to hit you with a much higher out-of-pocket co-pay.

 

[JackG]

From Scrpio: "Also, be aware that in the US if you are on Medicare or any other federally-funded insurance, if and when the drug moves from infusion to self injection it also moves from Medicare Part B coverage to Part D, which is likely to hit you with a much higher out-of-pocket co-pay."

This is a hell of a situation that shows how stupid government programs are. After starting on Entyvio I researched the cost of it, which was then about $7,000, but my hospital was charging Medicare $25,000 BECAUSE THAT WAS WHAT WAS ALLOWED (for about an hour of injection time). Are government officials just DUMB, or are they OBVIOUSLY PAID OFF BY HOSPITAL LOBBYISTS????

I would love to change over to self injection, but what retired person can afford a big jolt to Medicare Part D????

 

[Scipio]

I would love to change over to self injection, but what retired person can afford a big jolt to Medicare Part D????

Actually, starting in 2025 you can probably afford to switch the injections. A modification of the Medicare Part D rules that was included in Pres. Biden's massive trillion dollar infrastructure bill caps the Part D out of pocket expenses for Medicare recipients at $2000/year.

The situation is much improved since I wrote the above post two years ago. We can only hope and pray that Mr. Trump, in his zeal to overturn everything that Mr. Biden ever accomplished, allows these Part D limits to remain intact.

 

[ronroush7]

Hi everyone

I've been on vedolizumab infusions for around 4 years with great success, but recently we were really concerned I'd have to stop treatment because my veins are so badly damaged from years of IVs. We were also concerned about me having trouble getting to appointments due to the current situation with covid (I'm not allowed on public transport).

In June this year, my team told me about exciting new vedolizumab injections that they were going to be offering some patients at my hospital. In August, they told me I was going to be the first to get them!

The injections are the same medication as the infusions, just a different dose, and are subcutaneous so can be self administered. I have now had 4 injections, they are every 2 weeks and my first one was 8 weeks after my last infusion. I'm pleased to report they are less painful than an IV and of course avoid the risk of being in a hospital at the moment. I've also noticed my symptoms have improved because I'm not crashing every 7 weeks like I was on the infusions.

The injections are now being rolled out UK wide and will hopefully be available in the wider world in the near future .

Great news