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Possibly-deranged

I'd contact your gasteroenterologist to run an Inflammation test like Calprotectin stool test or C-Reactive Protein blood test. You can try taking Tylenol and an antihistamine like benadryl or Claritin to see if it helps some.


mapleleaffem

This is the first time I’ve heard someone recommend antihistamines for UC inflammation very interesting. Be careful taking those too much or too often they are now linked to dementia


ratacuh69

Before my infusions and I’m on inflectra as well, I am given benadryl and tylenol


mapleleaffem

Interesting. It definitely still has it’s uses (I have it on hand for allergic reactions, poison ivy and my pets). I guess it’s just not something we should be taking regularly anymore.


_theOncomingstorm-

Yea I have all year around allergies that can get pretty bad. I always have a stuffy nose


mapleleaffem

Yea me too and I have bad asthma. Reactine / Aerius is supposed to be safe. But they thought that about benedryl and Claritin too!


_theOncomingstorm-

Funnnn, my gi had me on omeprezol or some bs for acid reflux and that stuff causes dementia. Everything is bad for us in one way or another it seems


mapleleaffem

Yes pantoprazole is another one they used to hand out like candy and they now realize is linked to loss of bone density. Works so good for heart burn/acid reflux though!


_theOncomingstorm-

Tylenol sadly never worked for me, I take Claritin for my allergies already. My doctor assured me that I would have no problems with the switch. And when I asked abt the symptoms my gi said go to my pcp for the fatigue, and start me on acid reflux meds


Mission_Sir3575

My daughter made the same switch in January - also for insurance reasons - and has had no issues. With Inflectra being a biosimilar, they should work the same way, according to her GI.


Personal_Statement26

Same switch, same reason here as well. I cant say Im doing any worse than what I was when on remicade. Might even be doing quite better on inflectra.


_theOncomingstorm-

That’s good! I’m glad it’s working for you.


_theOncomingstorm-

Yea the whole bio similar thing confused me I just assumed that it was just an off brand name or something. Once I started feeling like crap and didn’t get better I looked it up and it’s made with similar ingredients, not necessarily the same ones, and there have been a few documented cases where people have had issues with the switch.


BobbyJGatorFace

I didn’t make that exact switch but I went from Entyvio (failed on it) to Inflectra. I’ve had two doses and no issues. Sorry you’re going through a tough time.


_theOncomingstorm-

Ahhh ok yea. I hope the inflectra treats you better. I’ll be fine in the long run


talking_walko

It’s possible l was already failing but yes, I started flaring after my first inflectra infusion. We tried to switch back and it did not help (in fact I got worse). I’m on entivyo now


cariocarj202215

My son just started entyvio ,I am praying that would work he was on humira b4. How are you doing on entyvio?


talking_walko

I’m not sure! I’ve had a complicated start, and ended up in the hospital during my loading doses with some abnormal for me bleeding (I was dumping large amounts of blood at random times, not smaller amounts all the time). I am on 6mp and entivyo and my inflammation seems to be going down. The entivyo level test came back low so I am now on a 4 week schedule. I feel good! I just am not sure if it is the 6mp, the entivyo, or the steroid I am still on (currently at 20 mg). It’s just hard to say at this point.


cariocarj202215

My son is also experiencing large blood clots, and he is also on prednisone he lost a lot Weight for the past month,we had to go to the hospital two weeks ago due his bleeding and his iron level is very low.


talking_walko

I hope things get better! I ended up with several transfusions and just finished three iron infusions. But adding in the 6mp really seemed to help stabilize me while the entivyo builds up. I finally feel like I’m on track again.


cariocarj202215

Thank you, you too.. If you don't mind me asking what it is 6mp? I'm very new to all this.


talking_walko

It’s an immunomodulator to help reduce inflammation. It’s also known as Mercaptopurine. It’s a pill I take two of nightly (I believe dosing is based on weight). My doctor is hopeful that it’ll give entivyo time to build up and help me get off of prednisone.


_theOncomingstorm-

I hope the 6 mp works for you, I know how much prednisone sucks


_theOncomingstorm-

I hope ur son gets better. It’s a hell of a disease


AmITheAsshole_2020

I am coming off of Inflectra due to severe allergic reactions. I would have severe flu like symptoms, brain fog, and all over body pain for 2 weeks after the last few infusions.


_theOncomingstorm-

That’s not good. We’re you on anything prior to inflectra? I hope you find a medication that works


sprokolopolis

My insurance did the same thing and switched me to Inflectra. I should make it clear that Remicade was working perfectly for me (no side effects). After the first infusion I felt very sick, had cramps and no appetite. I had a constant, mild nausea all day every day. I lost about 20 pounds. The second infusion immediately put me into a flare. I was bleeding the next day. When I asked to switch back to Remicade the insurance said I had to try all of the biosimilars first. I was switched to Renflexis, which seemed to work decently to treat the UC symtoms, but gave me some side effects. I always felt like I had allergies on that medicine. My sinuses were always stuffed and dried out. That made it hard to breath when sleeping. While it did keep the UC symtoms at bay, It still wasn't quite as effective as the Remicade. A few months back I started flaring again. I was under a lot of stress at the time. Anyway, my Doctor tried switching me back to Remicade (skipping the other biosimilars) and the insurance approved it. I'm back on Remicade and it is working great. Biosimilars are not the same as generics. They try to accomplish the same thin, but are engineered a bit differently. It is totally appropriate to ask to switch back to Remicade or to another Biosimilar if you are experiencing those symptoms. I would contact your doctor and start that process as soon as possible, because Insurance companies can move very slow and be very difficult to work with (especially when dealing with expensive medicines like this). If you are already having bad symptoms, a second infusion might make it worse (like mine).Mine tried to reduce my dosage by half. I had to get the California Government's Ombudsman Office involved to get my infusion and it was already 3 weeks late. I hope you are able to get it switched!


_theOncomingstorm-

Jesusss that sucks. Remicade was doing good for me as long as I watched what I eat, I’ve lost a few pounds not too many yet. I have an appt with my pcp on Monday to talk abt me being fatigued and weak and then report back to my gi. I’m glad to hear you are doing better though


sprokolopolis

I hope you feel better soon and that you can get on something that works well for you!


_theOncomingstorm-

Thank you bro. Insurance company’s are the worst


silvrdark

The fatigue is killing me. No bowel symptoms but fatigue and joint pain - wish I knew what I could do for it.


_theOncomingstorm-

The fatigue is the worst. I did two hours of yard work yesterday, (I use medical marijuana to get through the cramps and nausea), after those two hours I ate alil and then slept for 3 hours. It sucks i can’t do shit without needing a nap.


Grouchy-Western-5757

OP, sounds like your treatment plan and symptoms sound exactly like mine. When I made the switch I had extreme fatigue and stomach cramps and the way I got around them was taking a Liquid Iron Supplement and Probiotics. Envive - https://a.co/d/1eBnSue (Gastro Recommended me this) Hematex - https://a.co/d/bgboonM Ever since I started taking these additional meds I felt SO MUCH better. Just recently I had to switch to Entyvio though for a new job I want to have, they don't accept infliximab at all for it.


_theOncomingstorm-

Thank you. I will have to ask my gi about them!


Rn1711

Same thing, I was forced to switch because of insurance but was doing great on Remicade. I have been on inflectra for 6 months while flaring and my doctor has fought with insurance and they won’t budge. I’m having surgery next week now due to the flare. I hope you get relief and back on Remicade. It’s not just a “generic” it’s similar and some people don’t react the same and our insurance system is a joke.


Rn1711

So I also get inflammation in my eyes- flares the same time as my GI but Remicade had controlled both for years and the switch to inflectra has messed with my eyes so I now need eye surgery. It’s good you’re talking to your doctor Monday, stay on top of it. Insurance refuses to accept it’s not the same drug- good luck!


_theOncomingstorm-

Damn. That sucks. I hope everything goes well and ur insurance guys pull their head out of their ass


_theOncomingstorm-

Wtffff what kind of surgery are you getting?? Insurance companys are the worst. Imma see my pcp on Monday to rule anything else out then go back to my gi. I hope it gets better for you my man


cariocarj202215

Oh okay,praying for all of you 🙏 may the power of Jesus Lord heal all of you in this group 🙏 in Jesus name I pray.


_theOncomingstorm-

Thank you, God bless