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Ulcerative Colitis
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Posted 11/10/2023 2:01 PM (GMT 0)
Hello Serenity,
your profile says you live pretty close by to me. You are also on Mezavant ( (I just started ) and after preliminary lab work, I am to start Entyvio Infusions. I am flaring and Mezavant is not helping yet. In fact I started having mushy mucus D up to 8 xs daily...not normal for me.
I am nervous, but ready. Waiting to see what Pharmacare will cover.
Did you have problems finding an infusion clinic? And did you have side effects that last longer then a few weeks?
Thank you for any input...
Sassy
Posted 11/10/2023 3:26 PM (GMT 0)
Hi Sassysback. I am on Mezavant, but not Entyvio. I've never received infusions for anything. I just take Mezavant pills.

My GI wants me to go on Prednisone, but I want to try retention enemas of some kind. We are in a stalemate right now, but we'll see how the next round in the battle goes.

So unfortunately I am not of any help to you with your questions about infusion clinics or side effects. (Oh, if you were asking about side effects from Mezavant, I have had none).

Good luck with it all!! Maybe someday I'll be asking for your advice. sad
Posted 11/10/2023 10:33 PM (GMT 0)
I’m not in Vancouver but a few provinces east of you. It’s not at all hard to find an infusion clinic even here. And I’m doing great on Entyvio!
No real lasting side effects.

My advice: get super hydrated the day before and day of infusion, including with electrolytes. I plan the rest of the day for total rest—my husband does kids and dinner, and I read or watch shows in bed. This isn’t strictly necessary, but the radical rest lets my body do its thing. The day of the infusion I usually get achy and tired and hungry and thirsty, but if I do the radical rest thing, I wake up the next morning feeling totally normal.

Good luck!
Posted 11/11/2023 3:35 PM (GMT 0)
Serenity, I'm glad you are taking matters into your own hands. I'll let you know how the infusions go. I've had colitis for over 30 yrs without much progression until a couple years ago. Luckily I have a good caring GI who considers my concerns about biologicals etc.

GrittyHope, good to hear you are doing well on Entyvio. I've found out there is a clinic 18 km from where we live. I'm choosing the infusions because the 8 week dosing schedule makes traveling easier. Are you just taking Entyvio? My GI says I will stay on Mezavant for a while at least.

Hope Fair Pharmacare will assist in the costs! Otherwise, It would be too costly.

Sassy
Posted 11/11/2023 3:59 PM (GMT 0)
Just popping in to say I’ve been in remission for 6 years on entyvio. I have no side effects or reactions to the infusions. I don’t take any pre-meds either. Some drs have you take an antihistamine and/or mild steroid with the infusions. My first GI that initially put me on entyvio said he’d rather wait and see and I never needed anything. Now I have a different GI who usually prescribes premeds but I just refuse them. I do seem to get a little more thirsty the day of, and sometimes more tired but that’s it. Infusions are easy — only a 30 minute drip so I’m usually in and out in an hour or less. Do drink a lot of water before the infusion as it helps hydrate your veins (if you have cranky veins like I do).
Posted 11/12/2023 2:45 PM (GMT 0)
FlowersGal, that's great to hear you've been in remission for 6 years. My Dr wants me on prednisone too. That scares me too.

I am anemic again, and need advice on what I can do about it. Especially if the pills constipate or irritate my guts as they have in the past. I know the iron rich foods, but fail to get enough..especially while flaring. And I've only not been flaring a few weeks at a time in the past 2 years.

So what supplements are good, and what time of the day should one take them. I take Align probiotics in the morning, should they be taken at night? I have been in denial about how bad my colitis really is. Just hoping
I can get back to remission while still drinking a cup of coffee or piece of chocolate without consequences. In other words, I'm feeling sorry for myself..
Posted 11/13/2023 2:37 PM (GMT 0)
Hey this disease is tough not only on our bodies but also our emotional health. Sometimes allowing yourself to wallow in your misery for a while can get it out of your system. Set a timer and let yourself cry and feel bad. When the timer goes off, dry your tears, go outside for a short walk and then list everything good in your life.

I also was slightly anemic and dropped right below 100 pounds at my sickest. I just got my path results from my colonoscopy last week and my colon is healthy and normal with no architectural changes , dysplasia or ulcers. So healing is possible!

I never had to take iron supplements so I can’t advise you on that. 😟
Posted 11/13/2023 4:07 PM (GMT 0)
Hello again, Sassysback! I think it's fine to stay on the Mezavant along with the Enytvio. I had to jump to biologics after a decade without any treatment at all because when I finally submitted to Salofalk for a horrible flare, I had a paradoxical reaction (we tried it twice and it happened twice). Instead of dinking around to find a mesalamine that might not make things worse, we went with Entyvio.

My doctor also wanted me to take Prednisone, but I'd read about Budesonide as a gut-specific steroid and asked for that directly instead. He said he doesn't usually prescribe it because of cost, but was happy to prescribe it if I could afford it. I know it doesn't work for everyone, but it did work for me, and I was glad to avoid the Prednisone if it wasn't wholly necessary. Between the Budesonide and Entyvio loading doses, I was feeling much better within a few months. That was about a year and a half ago now. My colonoscopy in the summer looked excellent.

I also don't do any pre-meds for Entyvio: no antihistamine or Tylenol or whatever, just the hydration and then rest. Some folks say they get joint pain from it and that an antihistamine helps, but I have joint pain for other reasons so I don't attribute it to the infusions.

The drug company covered the costs at first while we got provincial funding in place, and then the province approved my appeal for coverage of a special medication. I think I pay 11% of the total cost now, which uses up all my annual employer-provided drug coverage amount, so I just hope not to need too many other meds in a given year. They calculate in my province based on individual income taxes, as I understand.

I'm rooting for you!
Posted 11/15/2023 2:46 PM (GMT 0)
Hey GrittyHope,
I too have very bad neck, shoulder, and now numbness in my left hand progressively getting worse from 2 weeks ago. I do have some degenerative disc disease in my neck (C-5 C-6). I wonder if this disease has caused arthritis? I also have dry eyes. And I'm anemic. Is it all connected???? That's what I think 🤔

My pension coverage should pay most of my drugs---I will find out in the next few weeks. Meanwhile, I'm getting a phone consult with an infusion clinic today to start the ball rolling for Entyvio. I'm wondering if you can get infusions overseas? We travel sometimes longer than 4-6 weeks( at least we want to) and the pens don't last that long. I will ask that question today.

I also just found out to take probiotics at bedtime...duh my brain remains in the fog. And what about curcumin? Does it help? All these questions???

Sassy
Posted 11/15/2023 8:28 PM (GMT 0)
Regarding cucurmin — my GI when I was diagnosed told me to take it as he said he knew someone it worked well for. I believe I started it then but it didn’t get me into remission. Did it help ? Who knows. I still take it. Does it help? I dunno. But I’m in solid remission 6 years so not going to mess with it. I figure it’s probably not going to hurt and isn’t that expensive.

Are you going to take infusions or use the pens? You should be able to get the enough pens in advance for traveling I would think.
Posted 11/15/2023 9:20 PM (GMT 0)
You don't have to take probiotics at bedtime necessarily. The logic is that you want to take them when stomach acid is lowest and when they will spend least time in the stomach. So this can be at bedtime OR first thing in the morning.
Posted 11/16/2023 7:21 PM (GMT 0)

Sassysback said...
Hey GrittyHope,

I'm wondering if you can get infusions overseas? We travel sometimes longer than 4-6 weeks( at least we want to) and the pens don't last that long. I will ask that question today.

Sassy


Hi Sassy, I looked into getting infusions in europe and the US (I’m in Ontario) and it sounded like a very daunting task. You have to bring your drug with you, and it has to be kept at a certain temp in a special mini fridge that must be carry on. Our trips are shorter now :/. Hopefully a better solution will come up.
Posted 11/16/2023 8:06 PM (GMT 0)
I haven't looked into getting infusions out of country--I've just timed travel around infusions so far. This did mean postponing one a bit, and I'm postponing one right now because I came down with an upper respiratory infection this week, but so far the little gap hasn't caused any trouble.

As for curcumin, I think there's good evidence, along with probiotics and fish oil/omega-3s. I take my probiotics in the morning. I do think that all the inflammation is related--my eyes (red and dry), joint pain, and colitis seem linked. Curcumin has some good evidence in ulcerative colitis, but it's also an anti-inflammatory more generally, so I figure it can't hurt in general. I started taking it a month or two after starting Entyvio, so it's impossible to separate out what's helping me, but I figure it's a low-risk intervention for now.
Posted 11/16/2023 11:24 PM (GMT 0)
Me again, I just noticed your comment about anemia Sassy, and wanted to mention that my GI arranged for me to have iron infusions because I was anemic and found the pills extremely painful in combination with my on-going flare. It was easy, similar process to Entyvio but a little longer (1.5 hours maybe?) and 3 sessions spread over 5 months resolved my anemia. It was covered by provincial insurance because of UC and intolerance of the pill option. 6 months later, I still have regular bleeding but no anemia. I was also on Entyvio at that time (now on Remicade) and it was not a problem to do both.
Posted 11/17/2023 2:25 PM (GMT 0)
Hey Midge..that is interesting about Iron infusions. Wonder if the Innomar clinic can do that too? I'll wait to see the final Calprotectin results and hear from my GI. I will see my Family Dr next week to get his opinion.

Is there curcumin found in pill form at most drug stores? I will look that up. I switched the probiotic to bedtime and don't notice any difference. However...didn't notice any improvements for the past year I've been on them.
So, I will also try omega 3s. Managing supplements is hard for me. Too many choices and they're costly. Never mind the cost of food in our Province now.

As for travel, and speaking with my care manager, infusions are nearly impossible overseas, and not covered. You can switch to self injections for treatment, but would need to refridgerate them. All in all...it's difficult. So the plan is to plan trips around infusions.

Sassy
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