My inflectra diary

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valleysangel92

valleysangel92

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Hello everyone. As some of you know I've had a hard time the past year trying to get onto a stable treatment plan. After having surgery 2 years ago I have tried pentasa, azathioprine and mercaptopurine. These haven't worked for me and it has been decided that I should now be put on inflectra which is one of the new biosimilar drugs. It's the equivalent of infliximab/ remicade and is thought to be just as effective but because it is synthetic its much cheaper.

As it's a relatively new drug and I haven't seen many people on the forum who are currently treated with it I thought I would start a diary so you can see how it works for me and compare it with the original remicade.

For reference my current symptoms are intense stomach pain, cramps, weight loss, nausea, lack of appetite, difficulty eating and major fatigue plus iron deficiency.

To get approval for the inflectra, my case had to go to a multi disciplinary team who decided we had to prove my symptoms were caused by an active crohns flare and not surgical scarring, which involved the usual barage of tests including a colonoscopy and a specialist scan called an isotope scan. Once we had this proof consent was given for me to start the infusions.

So far, I have had the same basic screening as for the other biologics, I had blood tests including a tb spot test (instead of a chest xray), a hep b immunity test, chicken pox immunity and a variety of others. They all came back good except for the hep b immunity which was a little lower than they wanted so I've had a series of 3 hep b jabs with a 4th next October.

As my screening is all okay and we have approval to go ahead, I have made arrangements with the infusion center to get my first infusion on the 5th of January. Before each infusion I have to call with an up to date wait so they can work out the exact dose.

I will update when I have had the first infusion and let you know how it goes. I will keep a record of any side effects and any improvements I notice.
 
Good idea for a thread, I know. Lot of people are wondering about it. Preparation sounds pretty similar to Remicade ( though I didn't have my Hep B levels checked before, I did recently and now have to get a booster and potentially another series of 3 shots so I wish I would have done it before Remicade for max effectiveness). Hoping everything goes well for you. I will be curious about how similar the infusion centres are since my infusion center is funded by Janssen ( the company that makes Remicade).
 
I've just called the infusions unit and the nurse that normally runs the infusions is off sick and has been since the 21st of December, so they are getting someone down to prioritise people and work out who needs to be done urgently and then they are going to ring me back later.

I ideally need to have 2 infusions by the 27th as that's my review with the consultant, but obviously there's going to be a back log of people who haven't had infusions and I'm guessing they'll prioritize those who have already started the infusions over those who haven't had any so I've got no idea if I'll still get mine tomorrow. My boyfriend is already on his way down from 50 miles away to go to the infusion with me.. he's rearranged work for this. If it gets cancelled I don't know if he would be able to make a different date (he usually works Monday, Tuesday, Wednesday and those are the only days my hospital does infusions).

I'll update when I've heard more.
 
I waited till 4pm and hadn't heard anything so I decided to call them again.. They say they didn't know what was happening and that I should call back tomorrow at 8 am to see if the infusion would go ahead, I explained I wouldn't be able to as I need to leave the house at 6.45 in order to get to the hospital for the 8.30 appointment.

So they went away to speak to someone and called me back,asking me to go in on Wednesday (the 6th ) instead.

I know it isn't their fault someone is sick but I'm not impressed with their communication. The nurse in question has been off for nearly 3 weeks so it's not like they weren't aware of the problem last week. A warning call would of been much appreciated. Anyway, so long as nothing else goes wrong my infusion will be happening Wednesday.
 
I had my first Inflectra infusion on Wednesday. I arrived at the hospital at 8.05am (buses) and after some confusion over who would do the infusion I was told to take a seat. The infusion nurse is still off sick, so my IBD nurse kindly stepped in and did my infusion. She arrived around 9 am and ordered the drugs from the pharmacy at about 9.30 (they aren't allowed to store them on the ward). She attempted to get my cannula in but my veins are terrible so she asked someone else to do it for me and after 3 attempts it was sorted.

We started my infusion at about 10.15 at 80mls to see how I would respond, after half an hour my obs were good and I felt fine so we increased to 100ml and then to 125 until we were an hour and a half in and we increased to 150. My obs stayed good but I did develop a slight headache so we chose not to increase any more after that. My infusion finished around 12.45, at which point my IBD nurse had to leave because she was supposed to be running a clinic in another hospital. I had to stay at the unit for another hour to make sure I felt alright and then I was allowed to go.

My IBD nurse was happy with how things went and seemed to think I responded well. The only draw back is the unit where the infusions are done is a discharge lounge, so patients are coming in from other wards all the time waiting to be taken home or moved somewhere else, this means space is limited and you have immunosuppressed patients mixed in with patients who potentially have infections or bugs which isn't ideal. There is also no contingency plan for the infusion nurse being off, so if I'd gone in on Tuesday there wouldn't of been anyone to do it. Although my IBD nurse was there Wednesday it meant neglecting her own duties on the wards and the patient helpline and she even had to skip lunch.

Side effects wise I'm wiped out and feel like I could sleep for a week and I had a headache Wednesday night into Thursday. I'm also very achey but I think a portion of that is due to the chairs they have and not the infusion itself.

My next infusion is on the 20th and I need to call on the 18th with my weight. Hopefully the infusion nurse will be back by then but if not we will have to work something out.
 
Ugh that is a rather annoying mess. I get people being off but not have a contingency in place is rather silly. Good thing your IBD nurse was able to cover (I wish I had an IBD nurse!)

Are the infusions always going to be in the discharge lounge or is there a plan for a more per many dedicated space. I would agree you don't want potentially infectious people mixing if you can avoid it. Plus it means very little privacy (which people being discharged probably don't care about since they have got all their info I assume but you might want some private space)

I was pretty tired after my first Remicade infusion (they actually advised me to take the whole day off work) so sounds like side effects are pretty similar. Hopefully it will lessen as time goes on (mine did gradually, better at infusion 3 and now 24 infusions later I get some fatigue but I can still go to work etc afterwards).

Hopefully the next infusion won't be as much of a hassle.
 
I totally agree, people get sick, nurses too they're human.. but there should be a plan in place for then this happens it shouldn't just be left to chance.

The infusions will always be in the discharge lounge, they don't have anywhere else to do them. There is absolutely no privacy and a lack of stock etc too. We almost had to share a drip stand between 2 of us. I can't imagine what it would get like if we had a full clinic.. We were running out of seats as it was (horrible upright seats that don't recline and no pillows or anything .. no space to lay someone Down if they had a reaction either) . I really don't know how they will manage when everyone is there.

It took me around 5-7 days to get over the tiredness really, the first 3 I was in a total zombie state. Then it was just noticing things wore me out more than I was used to.

I'm hoping the regular nurse is back for Wednesday, other wise it'll be a case of going and hoping there's cover
 
Hi, I had my second infusion yesterday. Arrived at the hospital about 8.20 am and was hooked up at 10.20 after pharmacy stopped messing about.

We did the infusion over 2 and a half hours and I had no problems, just felt very tired. Once it was over I had to wait half hour and then was allowed home.

Karen (the infusion nurse ) was back and is very nice, makes you feel very at ease which is always good in these situations especially as I was on my own.

I felt tired all evening yesterday but then when I got to bed I couldn't get off to sleep at all, I was wide awake and my throat was very dry so I didn't get much rest last night. This morning I woke feeling stiff and somewhat achey and with a sore throat which has persisted, along with a headache.

There are lots of colds going around and even people in the unit had viruses so I may well have picked something up, will make sure I keep an eye on it and if things get too bad will get medical advice.
 
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Well that is rather unfortunate about the location. I figured it would be different with inflectra because here the infusion centres I go to are paid for by the Remicade manufacturers. I would have hoped they would at least have an infusion specific area (like for my iron infusion my hospital has an infusion clinic where they do iron, antibiotics, IVIG etc, basically anything that's not chemo).

Yay your nurse was back though! I have 2 nurses I really like and I try to avoid booking a time when anyone else will be in.

It does sound likely it is a cold of some sort likely combined with post infusion side effects. Hopefully it goes away quickly!
 
Most hospitals do have specific infusions units, it's actually a little unusual that mine doesn't. There's another hospital not far from where I live that has a fully functioning infusion unit which isn't in use 3 days a week, but because there aren't any doctors available they can't do the inflectra in that unit. It drives my ibd nurse nuts, but there is it.

It's really quite silly that they only have one infusion nurse, I don't understand that either to be honest.
 
That's really annoying. Do you need to have a doc there for infusions to go ahead? I know my infusion center just had to be within x number of KM and be on call.

My clinic used to have one nurse at a time (but multiple nurses) but now they have gotten bigger (in fact in the 2 years I have been going here we are on location #3 soon to be 4 because they keep getting more patients).

Hopefully something will change soon and your hospital will get an infusion place or maybe a separate infusion place will open for Inflectra, you never know. I suspect as Inflectra gets more popular you will need more space than a discharge lounge.
 
Yeah there has to be a doctor nearby, preferably on the adjacent ward, before they can allow the inflectra to go ahead.

With us it's one nurse, and if she's off there's no cover at all. Hence the chaos before, lots of people didn't get their infusions for about 3 weeks.

Unfortunately the nhs is struggling for money and I don't see them doing much about this for a long time. The most I can see them doing is offering to supply another nurse for the 2 days a week that Karen is off. They are building a new super hospital about 20 mins away from the one I'm currently attending, but there are doubts over whether they will actually be able to stock and staff it.
 
Update: I saw my consultant yesterday and it seems like things are going in the right direction. My weight is up from 8St to 8St 7, and apart from the last week where my stomachs been stropping because of the virus I have, I have noticed a difference in my symptoms which is very nice I must say.

My consultant thinks I may of had a bit of the flu, which explains a lot.

It looks positive for me to keep getting the inflectra after the 3rd dose in Feb, as my consultant has instructed me to come off the steroids and says he hopes we will be able to maintain me with inflectra alone. So I am now taking one budesonide a day for a month and then it will be every other day for a month.
 
Yay! That's awesome news all around. Feeling better and the possibility of getting another nurse so there is no delay (especially important when you are on it, don't want to go too long between infusions). Happy to hear.
 
Sorry I think what I said has come across wrong.. at the moment there's no mention of supplying anyone to help or anything like that, I was just theorising. The most I can see them doing is that, but I don't know how likely it is.
 
Well pleased for you valleysangel92. Your treatment schedule is very similar to mine. After a pretty dreadful time I had my 1st infusion of Inflectra on 30/12. Similar after effects, very tired etc. But after 6 days the diarrohea was getting less, after 14 days I was having no diarrohea & feeling much better. I am due my 3rd infusion this wednesday, I've put back on all the weight I lost & generally feeling much much better. Saw my Specialist today, my CRP in december was 19, not high by general standards but high for me. Its now below 1.
Its too early to speak of life changing for me but I've now got hope & lots of it. So I hope everything proceeds in the same direction for you as it has for me thus far.
The very best of luck
Grant
 
Hello, im so glad you seem to be doing well :). I'm currently at my third infusion and so far things appear to be going well. We're attempting to speed it up a little and will see how things go. So far I'm the only one set up so its pretty quiet at the moment. Will give you all an update later to let you know how things have gone.
 
Hello :) no problems today, had my infusion over 1 and a half hours and felt alright. I was only observed for around half an hour so was out of the hospital at midday which was nice compared to the first when I didn't get out until after 2. Going back for my next in 8 weeks as planned.
 
That's nice that they were able to do it over only an hour an a half. Here it is 2 hours minimum but after the first 3 you don't have to wait for observation. I know there are a couple people who are on it for RA who have a fast infusion of 1 hour then no wait. That would be super convienient.

Hopefully the 8 weeks go smooth and your symptoms stay away.
 
At my hospital the minimum is 1 and a half hours they wont go any faster than that, and eventually i wont need to be observed afterwards. I am currently still having symptoms, I'm not symptom free yet, but they are generally not as bad as before although I am still getting days where the pain is bad and the past few days there's been quite a lot of urgency.
 
I think I have tonsilitis, the'flu' i got a few weeks back only went away for about 3 days last week and started coming back on Thursday. I was OK to have my infusion because I had no temp and felt well in myself, but thursday I had a headache and general aches all day, assumed it was the infusion, and then over the weekend developed a sore throat and the sniffles again and now have swollen glands and I think swollen tonsils. I've had tonsilitis before and it appeared in a similar way. I have a doctors appointment this afternoon to check.
 
Ugh. That's one sucky thing about being immunosuppressed, you get sick more often.

Hope if it is an infection you can get on antibiotics and get over it quickly. Glad you didn't have to postpone your infusion at least.
 
It turns out I have a sinus infection, I've been given antibiotics and been told very firmly that if I get any worse I have to go back.

I've also been told that she doesn't like my heart rate. It was 137 when I was there on tuesday, and has been consistently high in the past. She said it may of been my heart was working hard because I'm ill but because its been like it multiple times she wonders if theres anything else going on in the background. I have to go back when I'm feeling 'well' so that she can check my heart rate when I'm my normal self. If its high again then she wants me to see a cardiologist to rule out anything underlying and to maybe start a medication to calm my heart rate as she is concerned about the extra stress my heart would be under at that constant rate.
 
Well at least you know now.

That heart rate is fairly high. My resting HR is 60 and is understand normal is 60-100
Definitely something to watch for
 
My resting heart rate is rarely below 80, and gets anywhere up to 140, normal is around 70-90 with 90+ being considered high and 100 + being classed as tachycardic. When I was younger they put it down to age, they said my heart just didn't calm down when I hit 18, but now I'm getting older and it's still not settling down so they're concerned it won't by itself.
 
Did they give you a heart monitor to wear 24 hours a day or an event monitor for when you feel it going faster than normal ?
They way they could see if there were any issues
I can say that when the body is constantly fighting inflammation /pain heart rate tebds to stay higher

Hopefully the new meds will calm your inflammation and have a nice side effect
 
They haven't as of yet, the infection has cleared now so in the next few days or so ill call the doctors and arrange the follow up, I think I would have to wait to see the cardiologist before I'd get the 24 hour monitor I don't think my gp has them available unfortunately (gp's are quite restricted here its maddening how little they can do sometimes). That makes sense to me, I can see why they want to tick all the boxes though.

On a positive note, I'm now down to one budesonide every other day which is the lowest I have managed to taper in over a year. I have some pain the past few days but antibiotics and my crohns have never been friends so I think that's partly behind it.
 
I have Inappropriate Sinus Tachycardia. It means my hr at rest stays fairly high but in a normal rhythm. It was anywhere from 95-120 at rest and increases inappropriately to tasks (say walking takes me to 140-160, climbing stairs 150-180).

Anyway, I'm well controlled on a crumb of a beta blocker(I'm lucky as it takes more for some and to others don't respond to beta blockers at all). So resting now I'm high 60s-70s.

The US has just approved a med that has been available for sometime in the UK. It's called Ivabradine. It only affects hr and not bp (some can't tolerate beta blockers because it decreases the bp to low).

Hope you find some answers soon. Tachycardia can be quite frustrating and before dx and treatment it did limit my activities at times.

I also was initially diagnosed with postural orthostatic tachycardia syndrome but my symptoms and such fit much better with IST. A person can have both but my POTs would be very mild compared to most.
 
It turns out I suck at keeping this updated.. oops.

Well, I went back to the doctors last month and have been referred to cardiology now, I don't know how long it's going to take but knowing what it's like in my area it'll probably be a good few months before I here anything.

Up until recently I had been feeling good crohns wise. I even managed to completely stop the budesonide. That's where things went pear shaped though, my tummy hasn't been particularly happy for the past two weeks. I've had nausea, vomiting and erratic bowel movements.

I contacted the appointments office as I am over due for follow up and they told me there's no appointments until June so advised I contact my ibd nurse which I did. She thought it may have been linked to the inflectra as it can slow the gut down and advised me to talk to the infusion nurse. I had my 4th infusion today and spoke to the nurse as agreed, she didn't seem to think it was linked to the inflectra and took some bloods to check inflammation markers. She asked me to email my ibd nurse again so I've done that and should get a reply some time tomorrow.
 
Interesting. I haven't heard of influxumab affecting the heart except in people who are already in heart failure.

Congrats on the 4th infusion. Into your maintenance period now. Hopefully you can deal with these other health issues and your Crohns will chill out.
 
No my heart has been doing this a lot longer than I've been on the inflectra. They first noticed it when I was in my teens but they thought it would calm down as I got older and it hasn't. There's a strong history of heart disease in my family so they have to be super careful..and there are some heart conditions that can make inflectra more dangerous but it's not the cause of what's going on with mine.

It's the bowel symptoms that my ibd nurse thought may be linked.
 
Ah that makes sense. It always seems so weird things designed to treat IBD can make it worse for some people. Kind of like how some medications have both constipation and diarrhea as a side effect.

I hope that isn't the case and Inflectra goes back to working for you.
 
Hello everyone, I just wanted to give you a little update. I've been doing a fair bit better since my last infusion, I've been able to eat better and pain has been more manageable. I even had a little break with my boyfriend just over a week ago, we ate out every night went everywhere on foot and my body coped far better than it would have a few months ago. I'm also still steroid free, this is the longest its been in 2 years so thats definitely progress.

Things aren't perfect, this past few days I've had some nasty pain again, but I'm due my infusion next week so it's to be expected to an extent. My biggest problem at the moment is lack of energy, everything is 10x more effort than it should be but I am aneamic so that't not really a surprise.
 
No I'm not having iron infusions at the moment, my anaemia isn't classed as severe enough for the lab at my hospital to allow it yet.
 
valleysangel92 said:
No I'm not having iron infusions at the moment, my anaemia isn't classed as severe enough for the lab at my hospital to allow it yet.
Click to expand...

my anemia wasn't too severe either...hemoglobin was like 12. for a man it should be like 14. but my iron and ferritin were absolutely terrible, which means I would've become very anemic. Hemoglobin and hematocrit is a lagging indicator, by several months. This way if you look at iron and ferritin you can get on it much sooner.
 
Things work very differently in the uk unfortunately and they wont use infusions unless absolutley neccessary. Our health system is under a lot of strain and cost often becomes a factor in deciding what treatments are available. My ferritin has been low for around a year (as low as 7) but my hb is now 10. We've known for ages that Ive been heading towards anaemia, but they have very strict rules about when they'll allow someone to have an infusion. My ibd nurse has wanted me to have one for a while but it's down to the lab and they have set levels in place. They will continue to monitor what my blood count is doing and if things drop far enough then I will have an iron infusion.
 
I went to my infusion today..first off it took over half an hour to cannulate me leading them to suggest an injectable might be better.. Then when they finally managed to hook me up i had a big allergic reaction :(. Within 5 minutes of the infusion being started I was flused, feeling sick and light headed and massively tachycardic (i went from 90bpm to 160 in a blink). The infusion was stopped immediately and i was given hydrocortisone and monitored for about 3 hours. The infusion nurse was accompanied by one of the ibd nurses and he wasnt at all happy and said as far as hes concerned i shouldn't be given it again. Hes contacted my main ibd nurse and my consultant and explained whats happened and asked about the possibility of humira being used instead.

I am home now, but exhausted and very achey. I now have to wait to hear from my ibd nurse or consultant to discuss what we do next. Im hoping it wont be too long as im now left without treatment.
 
Big hugs on the rxn
Ds had two rxns to remicade
After the first one they pre treated with Iv steriods
But that didn't stop the second rxn just made less severe

He did start humira after that .
That was 4 years ago and he is still in humira

Wishing you the best of luck
 
Thankyou mlp. They did say that sometimes they have the option of pre treatment but the ibd nurse that was there said he wouldn't even feel comfortable doing that because it wouldn't totally stop it and the reaction i had was so severe and sudden. But as hes not my main ibd nurse he can only tell my team what he thinks he doesnt get much say.

Ive heard some really good things about humira and longevity of treatment so its something id be happy to try.
 
Can you get levels checked for infliximab there? To check for antibodies and how much is in your body. Might help decide if you should try again or not.
 
Im not entirely sure if they have that test for inflectra yet as its slightly different to the original infliximab. Its never been mentioned to me before at any rate.
 
Fwiw ds had the antibody test for remi and no antibodies even though his body reacted twice
His were mild reactions but we were told that his reactions would progress and they probably wouldn't be able to stop them the next time so not worth the risk
 
Mlp - thankyou for the information. Thats along the same lines of what they said to me, as they think if theyd not reacted when they did id have gone into breathing difficulty.

Fg - inflectra was the first biologic i was given, possibly because its so much cheaper than the other options. As i mentioned, the nurses who were doing the infusion have contacted my consultant to explain what happened and have enquired about a switch to humira. The other possible option is entiviyo but as my veins are already in a bad state they've expressed concern about the use of iv meds.
 

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