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04-14-2016, 10:37 PM   #31
FrozenGirl
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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.
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Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
04-15-2016, 07:18 AM   #32
valleysangel92
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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.
04-15-2016, 10:07 AM   #33
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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.
05-25-2016, 06:42 AM   #34
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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.
05-25-2016, 07:09 AM   #35
my little penguin
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So glad to hear
Hopefully once the inflammation is down more
Then the anemia can be reduced
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05-26-2016, 12:14 AM   #36
aypues
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Are they giving you Venofer infusions for the anemia too? I just had a series of 5.
05-26-2016, 02:19 PM   #37
valleysangel92
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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.
05-26-2016, 04:46 PM   #38
aypues
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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.
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.
05-26-2016, 06:59 PM   #39
valleysangel92
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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.
06-02-2016, 11:01 AM   #40
valleysangel92
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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.

06-02-2016, 11:33 AM   #41
my little penguin
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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
06-02-2016, 11:39 AM   #42
valleysangel92
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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.

06-02-2016, 06:50 PM   #43
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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.
06-03-2016, 02:25 AM   #44
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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.

06-05-2016, 07:26 AM   #45
my little penguin
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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
06-05-2016, 09:17 AM   #46
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That sucks. Well hopefully you will find something else effective for you. Have you done Humira yet?
06-05-2016, 09:45 AM   #47
valleysangel92
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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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