Crohn's Wars Episode IX: Entyvio hope

Greetings to all fellow members and sufferers

I found this forum after looking for more information on patient reactions to Entyvio, the treatment which I have just begun. I was put on Humira, and that caused very nasty side effects and a general worsening of the health. Remicade did follow, but after one year, it has lost its effectiveness. There is next to nothing in the system by the time I got to my next infusion date. So goodbye Humira, Hello Entyvio. Thankfully thus far the pain in general is not severe, but I remain seriously fatigued. Major joint pain has been my major thorn with respect to Crohn's. Too many days of hardly being able to get out of bed even with a cane. As with many others here, I am tired of Prednisone, but the tapering has begun. Tylenol 4 is the only drug thus far to keep the pain in check when things reach their worst, and of course that medication brings its own fun and games with it.

The upside to the new drug is that here in Canada it took only a week to get enrolled and accepted, with full coverage. Thank the Lord for small mercies.

Soon to turn 48, but feeling closer to about 120 and then some. :wink:

August is for me thus a true guinea pig errr bear month. I have stopped wondering if I will ever get back to work, or have any kind of "normal" existence pre-IBD.

Prayers and well wishes to all who walk this via dolorosa.

Hi Mr. Polar Bear! Thank you for your post. I am trying to get on Humira. My joints are terrible. I hobble around, and have lost the use of my right hand and wrist due to swollen joints. I am in the nightmare of the US medical system. At this point NO doctor in my area will see me and I have no gastro. But that is my sad sack story. Please let me know how you do on Entyvio. What side effects did you have on Humira?

I said a prayer for you. Pretty funny: Dear Lord, please help Mr. Polar Bear....but He knows who you are. Best wishes for your health!

Welcome Mr. Polar Bear! A fellow Canadian also starting on Entyvio ASAP. Hopefully next week. I'll be getting in on compassionate release through the MYVANTAGE program.

There is an Entyvio tread in the treatment forum that is fairly active.

Lightblb said:

Hi Mr. Polar Bear! Thank you for your post. I am trying to get on Humira. My joints are terrible. I hobble around, and have lost the use of my right hand and wrist due to swollen joints. I am in the nightmare of the US medical system. At this point NO doctor in my area will see me and I have no gastro. But that is my sad sack story. Please let me know how you do on Entyvio. What side effects did you have on Humira?

I said a prayer for you. Pretty funny: Dear Lord, please help Mr. Polar Bear....but He knows who you are. Best wishes for your health!

Click to expand...

Hi there. I also had nasty side effects from humira. In my case I would get kidney stones that sent me to the ER that it seemed no painkiller could help. It took a shot of dilaudid and toridol to help. I had also spoken with a lady who had taken it for arthritis and it had pretty much shut her kidneys down. It helps some people but from my experience and seeing others I wouldn't ever take it again.

My thanks for the warm welcome. Bear prayers always welcome. Bear your crosses but dont cross bears. ) So I have read somewhere.

I neglected to mention I was diagnosed last year with Primary Sclerosing Cholangitis, after a liver biopsy was performed. My specialist was even surprised. Great says I. Had to get a rare liver disease on top of everything else. Sigh. So far that disease has proven quiet. Nonetheless, I believe it is just a matter of time before the other bear paw hits the snow, and we will again be in a new world of hurt.

Worst side effects of Humira were at the start, flu-like symptoms, and feeling like death. Frequent infections followed. Then came the worst sinus infection I have ever experienced. The pain was something else. Tylenol 4, Preds, and 3 rounds of antibiotics to finally clear that up. Catscan confirmed severity and extent of infection.
This year, as Remicade started to fail, near kidney failure was experienced. I was severely dehydrated even though I was pouring down the Gatorade, lemonade and decaff sweet tea. First time I have caught the porcelain express in over 25 years.

So with Entyvio, I am in hope that although this might not be the silver bullet, it will bring about greater relief. One good week out of the last eight I have had.

I look forward to reading how everyone else is coping with their IBDs.

Bear all things patiently. (Ok, that was a groaner.):ywow:

Welcome fellow Albertans!

Glad the process of getting on entyvio was so easy for you. It may be my next option if an increased methotrexate dose doesn't work. My GI has very little experience with it, but the studies looked pretty good so I'm hopeful that if it comes to that it works out. I will be interested in hearing how it works out for you, any side effects etc.

Hi FrozenGirl (yup must be an Albertan....)

I trust you are tolerating the methotrexate. That is another drug that did more harm than good to my system.

I have been downright blessed in having an excellent GI/GE. I can contact him personally as needed, and there have been many situations where I have had to do so. He keeps on top of everything in the IBD world.

Entyvio is acting slower, as indicated. Pain is subsiding, but I still had to take Tylenol arthritis this morning in addition to my regular regimen. Gentle fatigue (the best I can describe it) and a bit of dizziness still persist upon rising. The fatigue does not really disappear, but goes through a gradual reduction for several hours, then by evening, I need to flopped in my bear den, with comfy pillows at hand.

This is your friendly neighbourhood polar bear saying good morning, good heavens, and good gracious on this holiday Monday. This is the first forum encountered that allows hugs to be sent. Bear hugs galore, and pass the cherry Coke!:ycool: (Not great for the gut but it is a guilty pleasure while it exists.)

Aug 9 update....

Entyvio proving to be ineffective. Bed ridden weekend. Might have to return to Remicade. In the end, not having the reslience of younger members, any return to normal will be a brutal struggle.

oh yeah, life goes on, even after the thrill of living is gone...

It does take a while to kick Hopefully you can hang in there for a few more infusions. How many have you had?

i have had only one infusion. I would rather not have another week as the past one, or days like this past weekend. Just the thought of feeling as I am being day by day the soup de jour makes me ponder what other collateral damage I am taking. Kidneys feel sore, and my compromised liver cannot he happy with the pain killing meds it has to cope with.

I will be contacting my gastrodoc today to see what should be the nezt plan of attack.

Once more unto the icy breach, once more, and fill up our coolers with cherry Coke. To sleep, yea, to indeed sleep sans pain, and fevered chills. :drink::drink::drink::drink::drink::drink::drink::drink::drink::drink::drink::drink::drink::drink:

Gash, forum ate my post. Anyhow,

That sucks, those days you just would give anything to go back to normal health. I too have heard it can takes months to work. I would try and hold out until at least infusion three if you can.

Second: You said it is 100 percent covered I'm assuming by insurance. What company are you with? Also where do you get your infusions. Talking to my Remi nurses it sounds like they have been having a hard time finding and setting up infusion clinics (She said they wanted to take over some of the Remicade Clinics to infuse it). Kinds personal questions, if you don't want to answer or you could private message me that's fine too.

Good morning FrozenG

My gastrodoc (as I have coined the term) has told me to hold off on further infusions:

1) because of the severity of the side effects, and being this ill, infusions of this kind not recommended.

2) He wants to see the results of my latest blood work. I just returned from the lab, so by tomorrow afternoon a better picture of the situation should have developed.

I just have Alberta Blue Cross. Plus based on income, full subsidies are granted by drug companies.

There are two Remicade clinics in Edmonton, one in the south end, and one downtown.
The Entyvio infusion clinic shares rooms with a dermatology clinic in the university area. This is brand new, and they are having teething problems.

Prithee this is of some help.

And to answer a personal question, yes I have tickled ground squirrels under their chin while feeding them Fruit Loops, as a kid on summer days camping in thr Rockies. :ybiggrin: Humour and prayer helps this old bear.

I'm sorry you are so unwell, Mr. PB, but I have to say that I do enjoy your posts.

I am getting my first infusion today - fingers crossed!

Part of the delay in me starting was getting everything in place. My GI said he has prescribed it to 6 or so patients so far. Can't imagine there are more than 10 total receiving it here at the moment. They've set up right across the street from the Remicade clinic - can't imagine they would play well together - different drug companies competing for $$$$.

I also started methotrexate this week, and it is kicking my ass, so fingers crossed for no side effects from Entyvio!

Ah. Sounds like a good plan. I must admit I am rather surprised ABBC covered it. I have had trouble with them in the past. Though ugh for a downtown infusion clinic. Hate driving downtown. ( can I just say how super immensely cool it is for me to know someone that lives in the roughly same area as me, that has never happened!).Also I too have fed squirrels crackers from my hand. Haha, me and my squirrel friends are pretty close.

Also thanks for sharing your experience lgpcarter. Like I mentioned, it may be next for me and it is very new in Canada so no one has any real details.

Igcarter: Glad the methotrexate is doing a good bottom whupping. :biggrin:

FG: As for driving downtown in Edmonton.......bleah. I have been to sick to drive apart from an odd day. So I have to take taxi. Not well enough to put up with a bus ride either. I have to borrow family vehicles so often access is limited.

When i feel good enough to drive, I would love to hit the highway to the mountains and take a loooooong holiday.....to soak in thermal springs and to snooze. And commune with the furry critters.