Had my infliximab last week but haven't been feeling as well as I usually do after my infusion. I've found out today, after 16 years on Remicade, they changed it last week to Inflectra without telling me. Has anyone else been switched like this? If so, did you notice any difference?
Thanks
Ruth
I have Remicade. It’s working miracles for me. Wouldn’t you have to approve a change to your medication like that? I hate to think they could just switch it without asking. I’ve only been on it for a few months but so far it’s been the only thing that has even helped. I hope things get figured out. That isn’t right.
Your so lucky Remicade is helping you. I have had 3 remicade treatments so far..every 5 weeks, im still in severe flares and pain.
Does it work later? What in your time between doses...my flares last 3 weeks and i get a week break !! Curious!!
Thanks , Angela
I didn’t notice a difference until I hit my maintenance dose. That was the game changer for me. I use a wheelchair and I’ve been able to start using a cane. That’s how much it helps me. Plus the lesions are better. But at the 4th week, my gastro problems return, it’s like the medicine is too low in my system. I also take azathioprine to help. I’ve taken quite a few meds and this one is the one that works best.
I also take that but how long did it take to find your dose? How mant weeks in between? I dont want to give up hope it will help!
I’m at 500 every 6 weeks. It wasn’t until I reached my maintenance that I felt the full affect. I also take 200 of azathioprine. I recently started lyrica as well for my fibromyalgia and nerve pain. This also helped. And I’ve started taking Aimovig to hopefully help my migraines. I have daily migraines. So far, not a lot of change with migraines but I have hope...fibromyalgia is better but right now I’m in a horrible flare. Both Behcet’s and fibromyalgia are hitting me. Stress is up and that affects me. My doctor felt 6 months was a good trial period for Remicade. It can take that long sometimes. By then you should know for sure. I hope you do better. My problem is I do better with some and then my body metabolizes them and they stop working so verdict still out in this one. I need to give it time.
Hi there. I saw you started Lyrica recently. It worked great for me too. My insurance decided to stop covering Lyrica 4 months ago without warning. I started to withdraw bad! I was in withdraw for 18 days and was VERY sick and was hospitalized. I am now on gabapentin. It doesnt work as well as Lyrica in my opinion. I just wanted to warn you about missing doses. It will defenetly hit you!
Yes, I missed a week and I felt it. But certainly nothing that serious. I’m fortunate to have a very good insurance plan. They have an excellent reputation in the industry. So far, they’ve never turned down anything, in fact they actually helped me get my wheelchair before the end of year, so I didn’t pay anything out of pocket. I’ve made a conscious decision to stick with them because of this. I’ve also noticed that in Oregon insurers are held to a higher standard. But gabapentin didn’t work for me, and my doctor took me off due to cognitive reasons. He documented those reasons and insurance would be hard pressed to force me back onto it after his well documented case. I had two doctors document the cognitive problems from gabapentin. But I haven’t had any cognitive problems from Lyrica. Each medication is different and I would never take gabapentin again. I feel about it the way you do about Lyrica. I do know none of them are meant to go off cold turkey. I found that out when I went off Cymbalta. I titrated off gradually but it wasn’t slowly enough. I had effects. My body needs slower....
They finally came out with a generic lyrica capsule just a few months ago!! Ask dr. For lyrica scriot and find a pharmacy that will get it for u
Omg...thats what happens to me ! Its like it too long. I get 500 every 5 weeks. Its still not working. I say it isnt because the flare is in my legs and arms and the pain feels like i have cement in my joints and 1/2 way down my limbs..i also have fibro and it flares with my flares. ..also was on Lyrica 75 3xs day, now at 75 1xs per day because it made me gain weight and feel icky. Most do well with lyrica. I had severe migraines but they just stopped. Thanks for sharing. Its weird knowing someone else is on a very simular meds!! I feel so isolated and its scary!! Appreciate your help 
Even if i suffered just for a week everymonth,
Mine is 3 weeks flare, 1 week better and it is Hell when it starts back up 
Yeah. I’m hoping Aimovig helps. The gastro problems are the worst. If they don’t get better I will go off a Remicade and have a more extensive scope. But I’m not keen on that right now. Hope you get resolution. Let me know. Crossing fingers.
Hello, I’m interested to learn how the Lyrica has helped with your Fibromyalgia? I live in the UK and not heard of this drug so any information would be great thanks 🤗
I have been on Remicade for many years and have it every 6 weeks. It has only lasts 4 and a half weeks before the pains rear their ugly heads. I have been told by my Consultant and Specialist nurse that it isn’t licensed to give any less than that. The last infusion given on the 22nd January only lasted 2and a half weeks leaving me with two swollen hands resembling boxing gloves. Plus a left swollen knee and a very painful right shoulder. They tried to switch me to a cheaper brand by the name of Remsima which was totally useless.
They tried to change me to Remsima which did nothing at all for me. It’s a cost thing but my Consultant looked at my results and fought for me to have the Remicade reinstated.
I've been searching for experiences with Remsima and came across your posts. I was prescribed Remsima early this year following an aggressive flare after hip surgery. I still have methotrexate - the two drugs work in combination apparently. Remsima is my first biologic - and I'm still not sure whether it's right for me. After 4 months I'm getting a lot of pain in joints and muscles plus horrible skin problems - scaly, itchy, blotchy. My nose looks as though I've had too much sun it's so red and peeling!
I'm beginning to doubt whether this drug will do anything positive, but I'll give it a few more months and see how it pans out. My rheumy nurse just says "wait and see". As you say, it's cheaper - a biosimilar of Remicade, I think.
Your posts have certainly given me food for thought!
Ruth,
I was started on Inflectra instead of Remicade, and I am wondering if I should’ve been on Remicade all along. Doctor explains that it is biosimilar, and certain things are better, such as no more ulcers, but I have recurrent meningitis because of BD and have the worst headaches and body aches - the list is actually long. I am at 6.5 units of Inflectra once every four weeks. I get about five good, fever-free days out of 30.
Thanks
Dave
Hi Dave,
They say these different infliximabs are biosimilar, presumably in their structure, but not in the way they work in the body. The inflectra was actually slightly painful as it went into my vein, Remicade didn’t do this, which is why I thought they had given me something different. It was only when I logged onto my GP site to look at my records did I find out I had Inflectra instead of Remicade. These may be biosimilar but they are NOT the same. Maybe you should try Remicade. The dosage for both is worked out according to your weight, the usual dose is 5mg/kg, so if you weigh 70kg your dose will be 70 x 5 = 350mg I'm not sure what 6.5 units is?
Ruth
Hi Ruth,
I think they just took out the zeros when telling me what they were giving and how much. My rheumatologist started me out at 3 “units”, then gradually went up by the 3.5 additional units over the next several months, skipping one infusion because of illness. They want to increase again, but apparently you cannot reduce a dose ever, for the rest of your life, because of how the Inflectra works. After each infusion, I am sick for a couple days, but at around day 4-6, I get a stretch of around five good days with lower or no fever. How odd that your doctor didn’t tell you about the change in your infusion. I don’t like it when doctors act unilaterally to the point of putting poison into your body without telling you. It might be a good idea to ask them each time and maybe even have them show you the infusion before even starting your IV. Thanks for your input about how Inflectra makes you feel. I got suddenly weak and passed out during the second infusion, my head flopping over to one side. It has been the only time something like that has happened during an infusion. I’ve had to pull over and get sick once on on the drive home, two hours away. Each time I get an infusion, I react a little differently. Have you found it to be this way?
Thanks,
Dave
Hi Dave,
I think you are right about the 00s. Each vial/unit contains 100mg infliximab. I was only given the Inflextra once, maybe they ran out of Remicade, but I have checked every time since that I'm having Remicade. I'm on 10mg/kg, a high dose, it is not working as well as before, (I've been on it for 16 years) especially for my gastrointestinal problems, so my new consultant (just moved to a new area) is thinking of changing it to something else. It doesn't sound as though you are tolerating Inflextra very well. I don't have infusion side effects with either form of infliximab, thank goodness. Maybe you need to discuss this with your consultant.
I hope things improve for you.
Take care
Ruth
Hi Ruth,
Thanks, I will bring it up with my rheumatologist. Last time I was there, the nurse told me that the dose these biologics cannot be lowered, and there are several biosimilar frugs they can try. With Inflectra, I have been getting a small number of good days. Usually, around 4 good days with lowered fever or other helpful main benefits between dosing.
Take good care, Ruth. Thanks for “listening”.
Dave
hello, I've had 100% same problem with Humira i was taken off infliximab owing to growths forming that needed removal, so was put onto Humira then changed to the Generic brand and like you within a few days started feeling really unwell, My consultant then decided to put me back on the proper version and those symptoms have gone again.
My daughter was in hospital, getting out just before Easter. Photo in paper & as usual paper put wrong information to print. ??
Back to work
Home alone
Advice please!
Down days...
