Author Topic: Off Stelera, Infliximab next. What can I expect?  (Read 784 times)

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Offline Colossus

Off Stelera, Infliximab next. What can I expect?
« on: January 06, 2012, 07:58:00 PM »
Went to the Derms this morning, and I have really reached a crossroads with my treatment of late, and don't know which way to turn. Stelera has just not worked for me, at all. After early signs of progress, each time I went back it was getting worse and worse, and my PASI which getting higher each time, but they kept me on it, as there was no funding available to change my treatment, and they were getting the Stelera supplied for free as part of a test by the drug manufacturer.

With new funding coming along in the next while, they need me clean, as if I choose to go on to something else, I have to give an answer straight away, and start asap, and with there being a 15 week run off period to be clean of Stelera, they didn't want to risk giving me my injections today and miss out on the new funding when it comes. So I decided to stop the treatment. God knows how bad its going to be until I start the next treatment.

Its looking like that next treatment will be Infliximab infusions, and that word infusions just fills me with dread. What can I expect with this treatment, and how successful is it likely to be? I've been told its probably the best treatment there is, especially for someone as big as myself. I was verging on really needing three shots of Stelera to get any benefits out of it, and the drug company were prepared to let me get three shots, but my Derms didn't want to do anything that hasn't been fully tested before. I don't think I'd have been that happy with it anyway.

Who here has been on infliximab, and what were your experiences? I really want to get as much info as possible before I commit to anything.

Cheers

Col.

Offline Mimz

Re: Off Stelera, Infliximab next. What can I expect?
« Reply #1 on: January 09, 2012, 10:52:23 AM »
My sister is on infliximab to treat Crohn's Disease, so I'm not sure about its effects on P, but with regards to side effects, it makes her feel really nauseous and incredibly tired, particularly the day of her infusion and the day or two after. She's on a really high dose though (and it's still not helping, so she'll probably be put on Humira next). She needs someone to take her to and from the hospital for her infusions, as there's no way she could drive afterwards, but after a couple of days she feels well enough to continue her normal routine.

Hope that helps.

Mimz

Offline John Boy

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Re: Off Stelera, Infliximab next. What can I expect?
« Reply #2 on: January 09, 2012, 12:21:11 PM »
i do feel for you i hated the clean out period that used to make my skin erupt and out of control until the next med starts to work

could you have gone on to 8 week injections with MTX combo ? was this an option or depending on weight the 90mg option, as hear so many failing on the 45mg shot

hope all goes well for you and your funding is sorted

JB :)

Offline Colossus

Re: Off Stelera, Infliximab next. What can I expect?
« Reply #3 on: January 10, 2012, 09:05:08 PM »
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i do feel for you i hated the clean out period that used to make my skin erupt and out of control until the next med starts to work

could you have gone on to 8 week injections with MTX combo ? was this an option or depending on weight the 90mg option, as hear so many failing on the 45mg shot

hope all goes well for you and your funding is sorted

JB :)
It was on option, yes, even the drug company wanted to try that, but my derms weren't prepared to give anything a try that hadn't been fully explored. If they had more findings on this option they would have considered it, but wouldn't take the chance otherwise. Also, they suggested putting me on MTX as well, but after my previous problems on it, I refused to even let them suggest it.

Offline Colossus

Re: Off Stelera, Infliximab next. What can I expect?
« Reply #4 on: January 10, 2012, 09:06:27 PM »
Should say, also due to my weight I was already on the 90mg dose, and the derms felt that it still wasn't enough to make a huge difference.

Offline John Boy

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Re: Off Stelera, Infliximab next. What can I expect?
« Reply #5 on: January 11, 2012, 12:25:14 AM »
mines every 8 weeks and working very well with the weekly injection MTX


Offline arizona

Re: Off Stelera, Infliximab next. What can I expect?
« Reply #6 on: January 11, 2012, 08:02:18 AM »
I'm currently waiting while funding is applied for for infliximab, sounds pretty straight forward to me. Take a book, get a day off work to chill out and read for the morning while having the infusion, hang around for the afternoon so they can keep an eye just in case of any problems (rare, they said) and hopefully it gives me good clearance , which is expected by derm  :)