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Scared of moving on to Biologics

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Ulcerative Colitis
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Posted 5/4/2023 2:17 PM (GMT 0)
After 20 plus years of 5 ASA meds, my GI suggests moving on to Hadlima or Inflectra.
I was told my flares would continue to increase and last longer..so it may be time to try a stronger treatment. Yes.. my flares have increased right along with my stress.

There are so many questions I need answers to before I decide. That's stressing me out more. If there is someone from Canada listening, can you tell me if these drugs are mostly covered with Fair Pharmacare. I am reading how costly they can be.

The side effects sound awful. Especially because I am already proned to Sinus infections, UTIs, skin problems like excema and shingles, joint pains, etc etc.

We are planning a move and have a cruise trip in September that I am wondering if the injectable or infusion works while travelling.

Any insight would be appreciated. I am so thankful for this board. It's helped me for so many years when I have needed it.
Posted 5/4/2023 4:04 PM (GMT 0)
I am not in Canada, is there a reason that you can't contact Fair Pharmacare & ask about coverage?

Most people are scared when they hear the words we need to move you to the next tier of medications. Not everyone has the reactions you are reading about. I was on Remicade & Humira & was healthier because it kept the disease under control.

Both are biosimilars, if you decide on Hadlima it will have to be kept refrigerated/cold at all times. If you go with Inflectra, I would look at trying to schedule the cruise for right after the infusion.

Perhaps if we have a Canadian on here they will comment. Take care.
Posted 5/4/2023 6:56 PM (GMT 0)
I was scared and hesitant to go on a biologic as well, but honestly it’s been great and wonderful. Injectables you can do at home which is convenient. As far as keeping it cold while on a cruise I’m sure they would make accommodations for a medical necessity.

I’m on entyvio which is 8 week infusions ( after the loading doses) , which is the same as remicade/inflectra. Honestly I’ve only had to schedule a vacation around an infusion once in 6 years. I don’t travel all that much either, though. But it’s really not been an issue. The one time I had to juggle, we went to Disney world so I postponed it a week. I was well into remission by then so it didn’t bother me.

Most of us on a successful biologic remission only wish we hadn’t waited so long and worried needlessly. I haven’t been sicker than usual and the odds of those side effects are usually not much higher than for general population. Remission is well worth it!!!
Posted 5/4/2023 7:31 PM (GMT 0)
I have been researching these drugs and have found I may be covered by Fair Pharmacare, after a $2,500 deductable. So I'm not as worried about that.

FG...glad to hear you are doing well. Did you have to try other biologics as well?
Did you have any reactions during initial loading doses?

I would try to schedule my appointments to miss my injections if I choose that route, prior to going on vacation. Our trip is 24 days total. Half on ship...half touring Eastern Canada via rail. So keeping meds cold would not be easy.

I don't know what's better..infusions every 2 months or self injections every 2 weeks. And do people stay on biologics for long periods? My colitis has only gotten bad in the past year. I'm almost through a 4 month flare. Longest and worst. My Calprotectin levels are over 1100...years ago one was 5000. So would waiting 6 months hurt? It's such a stressful year already with family etc. We want to move as well.

Thanks for your support...Sassy
Posted 5/4/2023 10:26 PM (GMT 0)
I think most of us were hesitant to start biologics, but then once we do it we realize it's no big deal. I haven't had any more colds, flu or infections than I did before I started biologics ... maybe even less (that was pre-covid -- now I just stay away from people as much as I can so I haven't been sick at all the past 3 years lol).

I was on Humira before I started Remicade (now on Inflectra). Doing the shots of Humira was easy, but it would be a real hassle to travel with them. While the infusions take longer, you only have to do it every 2 months and then you can forget about UC until the next infusion.

Just like any other UC med, you would be on it for life ... or until it stops working. There are several people on this site that have been on Remicade for over 10 years. I've been on it for 4 years now.

What are you doing to get out of your current flare?
Posted 5/4/2023 11:09 PM (GMT 0)
I haven't gotten sick at all--not even a single cold--since before the pandemic started. I didn't have any side effects except for something rare when they doubled my dose of Humira. Imuran gave me nasty side effects. I think you can keep the Humira unrefrigerated for a week if travelling if I remember correctly. I was super freaked out by biologics but I wish I had tried them sooner.
Posted 5/4/2023 11:35 PM (GMT 0)
I felt so nervous about jumping to a biologic after managing mild UC for 11 years without meds and then learning I didn’t tolerate mesalamine (or at least Salofalk), but I have had no discernible side effects other than fatigue the day of my Entyvio infusions.

I’m also in Canada, in a western province. My Entyvio is covered by the provincial government as an “exceptional drug”—there’s individual paperwork and approvals, and they toggle it to income and insurance levels, I think. A kind nurse once told me she started a biologic—must have been injections—and learned to fill the prescription at a grocery store pharmacy that lets you collect points (maybe Aeroplan?), then could afford a nice warm trip every once in a while on the points!

I am so, so grateful for a med that works. I don’t think it’s good for the body to keep letting a flare linger if a biologic could help: the cost/benefit doesn’t work out in the end.
Posted 5/5/2023 1:02 AM (GMT 0)
To slow this flare down, I went on a diet for a few weeks...potatoes, white rice, chicken and white or sour dough bread. No coffee, fried foods, spice, or raw vegs, or chocolate or alcohol. (Not that I drink much, and never eat spice.) I take probiotics and started Metamucil. I had started flaring in November after having food poisoning. I think 2 weeks in Mexico really helped too.

After a call from my GI the other day...all the sudden, ( to me anyhow) they think I should start Biologics. Is Entyvio a Biologic? And why would I not try that first?

I'm going to talk with a pharmacist to get their opinion and some answers. Like staying out of the sun! Sunshine really helps my mental health.

Sassy
Posted 5/5/2023 1:08 AM (GMT 0)
Yes, Entyvio is a biologic. I personally still spend time in the sun. Can you try upping your enemas first or is our signature outdated?
Posted 5/5/2023 4:58 AM (GMT 0)
Personally I would try entyvio first. It’s not weight based so the infusion time is only 30 minutes compared to 2-3 hrs for remicade. I have never had a reaction of any kind. Usually I’m a little tired the day of and my lips get really dry that day also. Very minor. I did not have to try another med first.

It took a good 4 months to get into complete remission but I had greatly improved by my loading doses. I would not put it off if I were you. Flares can go from 0 to crazy awful really quickly. All that inflammation in your colon can be VERY damaging. By the time I finally reached remission, over the next 2-3 colonoscopies they kept finding polyps and several were pre-dysplasia. I blame that on all that inflammation for over a year. I haven’t had any more since I’ve been in solid remission.
Posted 5/5/2023 1:27 PM (GMT 0)
Also… there are the newer JAK inhibitors and the like, which are pills. Xeljanz and Rinvoq. Several here have had great success with these newer medications. They seem to be rather fast acting too.
Posted 5/5/2023 3:20 PM (GMT 0)
My signature is outdated...i was instructed to stop the enemas. My GI likes to endorse certain meds..perhaps that's more beneficial to him..if you get my drift. Although..ive heard Brand name drugs can be a better choice to deal with certain diseases. So I'm not sure why he chose these two options for me. Except that 5ASA was not keeping me in remission anymore.

I'm going to look at JAK inhibitors on my own too...a pill sounds easy..🤔
Posted 5/6/2023 1:16 AM (GMT 0)
Your insurance will likely make you try something else before JAK inhibitors if you're in the U.S. I believe that was a newish FDA rule recently. They're the only thing that worked for me though when mesalamine didn't cut it anymore.

You could still tell him you want to try enemas first IF that's what YOU want to do. Entyvio has the best safety profile. It did nothing for me though.
Posted 5/6/2023 1:16 PM (GMT 0)
I'm in B.C. Western Canada and I'm trying to find Infusion clinics in the lower mainland. We plan to move to White Rock Area. I don't know if my GI would set up the site and apply for Pharmacare Assistance on my behalf? I would probably go for the Inflectra as it's every 56 days....but still undecided

My current Pharmacist says in order to travel with Hadlima (must be kept cold), your GI could apply to the drug company to get a specific 2 syringe package that can last for s couple weeks...but we travel for up to 6 weeks sometimes.

All this, a planned trip and moving after 30 years to downsize and be close to our daughter, has caused me more anxiety and symptoms.

I am not using enemas anymore as my GI suggested. And I have started consuming more caffeine and sugars (My depression go to) so I'm feeling worse and sorry for myself. This is probably a no brainer, but I'm assuming once on a Biologic, staying away from my comfort foods is a must as well or I will just go into a flare regardless.

Anyone who can help with clinics in my area..i would appreciate it. Thanks..Sassy
Posted 5/6/2023 3:17 PM (GMT 0)
Sassy … in remission, I no longer have to watch what I eat. I think that’s true for most of us. My only issue is I tend toward constipation and that is bad news for my diverticulosis issues. I find eating too much sugar can be bad for me. But I’m a sweets lover and most of the time it’s ok. I was so happy when I could drink my Starbucks white mocha again!!!! (Although I now get fewer pumps of flavoring to cut down a little on the sugar —which is fine as they’re overly sweet anyway! 😀)
Posted 5/6/2023 4:24 PM (GMT 0)
Thanks Flowers Girl...good to know I could enjoy a little caffeine and chocholate in the future.

I'm going to ask my GI about Entyvio ( Vedolzumab ) as it's not supposed to affect the entire immune system. Also..i heard VIZ is the safest and is only a 30 minute infusion. And maybe it's available in injection form beside infusion. I need to find out if they can be interchangeable? So many questions.
Sassy
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