Has anyone had Infliximab and developed Lupus?

maria09
maria09 Member Posts: 1,905
edited 16. Jan 2014, 01:11 in Living with Arthritis archive
Hi
A belated Happy New Year
I haven't been on here for a while as my daughter is having a severe flare of her Ulcerative Colitis and it's been a real tough time all round plus the stress has set off my Inflammatory Arthritis but hey that's not a problem I can cope as its happening to me!
We went to see her Gastro guy and he's finally applying for her to have Infliximab so hopefully in 2-3 weeks we will find out if he's been successful
We know the risks and side effects to this drug but wondered if any of you who have had this drug have developed Lupus or suffered any of the nasty side effects?
Any info would be greatly welcomed.
She does go on the chrons and colitis forums but wondered how it affects the Arthritis guys on here
Thank you for reading
Maria

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    I've decided to give up posting on here and go somewhere else
    Good bye
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I suspect the reason you have not had a reply is because no-one could answer 'yes'. On one occasion no-one answers and you're off - a bit rich, don't you think, after all the support you have received in the past? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Maria, don't be hasty! You posted the first one at night when many have probably gone to bed, and the second one this morning when people are either just starting work, on the school run or struggling to get going. You know nobody would ignore you, this is the most supportive forum I have ever been on.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    That's true ouch
    DD yes I've had support but I've also given lots of support too!
    I suppose at the min as I'm stressed up to the eyeballs I'm quick to judge and get annoyed easily
    Life is pretty rubbish! Note I didn't swear! And there are lots of health issues with many family members too much to go in to
    So I do apologise for my harshness it wasn't intended towards anyone I'm just frustrated
    Maria
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Maria, yes you have given lots of support too. We all get like it, or at least I know I do. It must be horrible for you watching your daughter being ill. I've also had lots of family health issues recently and it just compounds how we feel doesn't it?
    Stay on the forum Maria, there is always someone to listen and advise, even if it takes a few hours for anyone to be around!

    xxxx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    There are some difficult things going on here at the moment. valval died on -01 January (today is her funeral) and Forgmorton's 16 year old daughter was diagnosed with acute lymphoblastic leukaemia on 04 January and is currently undergoing some very harsh treatments. You are not the only one who is stressed - we all have our cares and concerns. Yes, you have supported others and I hope you will continue to post because your contributions can be informative given your nursing background. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Oh dear
    How sad Valval was such an inspiration
    May she rest in peace and look down on us all
    Maria
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    So sorry you didn't get any replies, Maria. I'm afraid I don't have any answers for you, how about speaking to her gastro doc and finding out how common it is? x
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    maria09 wrote:
    Hi
    A belated Happy New Year
    I haven't been on here for a while as my daughter is having a severe flare of her Ulcerative Colitis and it's been a real tough time all round plus the stress has set off my Inflammatory Arthritis but hey that's not a problem I can cope as its happening to me!
    We went to see her Gastro guy and he's finally applying for her to have Infliximab so hopefully in 2-3 weeks we will find out if he's been successful
    We know the risks and side effects to this drug but wondered if any of you who have had this drug have developed Lupus or suffered any of the nasty side effects?
    Any info would be greatly welcomed.
    She does go on the chrons and colitis forums but wondered how it affects the Arthritis guys on here
    Thank you for reading
    Maria

    I'm sorry to hear that your Daughter has been so unwell, I have been on Infliximab for around 9 months now but may need to come off it due to some "unusual" side effects that are being looked at (Rapid weight gain, extreme fatigue, loss of appetite and general ill feeling) Other than the recent side effects that I seem to have developed over night the drug has been really good with little to no side effects.

    I also talk to quite a few people at the Infusion clinic, some of which have chrons and colitis as well as Arthritis. Many of them have been on the drug for some time and swear by it.

    For me the side effects on paper looked really bad and quite scary at first, but I felt that I had to give it a go and take the risk. My quality of life was much worse back then than it is now and I think I made the right decision to try the drug out.

    The hospital will monitor her blood pressure, temp etc every 30 mins or so while the infusion is ongoing, some people also get pre meds before the medication too. I think the drug is fairly safe as long as you are made aware of what can go wrong, and what action to take if things do.

    I hope this was some help to you, sorry for not picking up on this any sooner. I haven't really had the energy or time to read or post much in recent weeks.
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    To my knowledge ( I have Systemic Lupus), if you develop lupus as a reaction to a drug (DILE - drug induced lupus) then symptoms subside once the med is stopped and it has left your body.

    In rare instances the lupus remains, but most of the meds for chrons are used to treat lupus anyway. If you require any info on SLE, just send me a PM. I do know a couple of people with SLE and chrons.

    I hope the med helps your daughter.

    P.S. Very specific med questions always tend to get less replies. Especially at a time of year when many of us are unwell with bugs on top of our daily stuff.
  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi As5567
    Thank you for your reply and yes it has helped
    My daughter had an iron infusion recently and whilst she was there some of the other patients were having infliximab so she's quite happy to have it. I've read all the side effects but you can't beat personal experiences, we also know if it doesn't work then the next step is surgery which we are hoping to avoid. I'm sorry you are getting those horrible side effects now, has they said what other drugs they could try for you?
    Hi Suzygirl thank you for your reply too yes I've heard Lupus is reversible if the medication and my daughter is prepared to take that chance
    I think what is causing us so much concern is the fact it might not work, her Gastro guy gave us all the statistics and it doesn't work for all
    I have to try and stay positive for her but I'm stressed out of my little brain as bless her she's also suffering nasty side effects from her Prednisolone and her mood is rock bottom and has been having panic attacks which are not nice for her and distressing for all of us.
    Thank you for the offer of Pm you if I have any questions I will definitely contact you.
    Thank you both for your replies
    Maria
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