Hi there, new member; re Infliximab.

[Honey]

Hi there, I was diagnosed with Crohns disease 2 years ago after many years of pain. Since then the usual medicines have been tried but I had a severe reaction to them, and had to come off meds! I recently have begun Infliximab infusions : delighted , good news, it has worked!!! However, I am now experiencing constant leg and arm pain, after recovering from a throat infection. Cause is not known yet, I see my consultant next week to discuss this. I have had to cancel next weeks infusion as I am not well enough. I found your site and thought it would help to talk to people with similar experience. When I am well enough to go out and I do , as I have a positive outlook on life, I smile when I am told " You look so well! "
You can not tell how well someone is ,or how they feel, by their appearance!

 

[Angrybird]

Hello and welcome to the forum

How many infusions have you had so far? Is this the only med you are on for your crohn's? Have your vitamin levels been checked recently? I have myself been on Infliximab and it did a great job on the tum for a fair while but then I started getting problems with severe joint pain and it was because of this med so it had to be stopped,this may not be the case for you but it is worth asking the doc if this could be what is causing your leg and arm pain. It is also worth checking out our sub forum for this med so see if any others have had this issue: http://www.crohnsforum.com/forumdisplay.php?f=58.

Wishing you all the best and please keep us updated on how you get on.

AB
xx

 

[Honey]

Hi Angrybird, Thank you for your quick reply. All other meds have failed with me, or made me seriously ill ie Pancreatitis. I have had 3 Infliximab injections, which I was delighted to hear brought the Inflammation down to normal level! I was due to have my first 8 weekly dose on Monday. I cancelled as I am in constant leg and arm pain. My consultant said to me on the phone that any reaction to Infliximab should have happened at the beginning of treatment! I go to see him next week. I am very worried that I may have to come off this meds as there is nothing else. I am on vitamin D and folic acid. I have a hiatus hernia so I can only tolerate paracetomol. Aint taking the pain away! I was on Budesonide before infusions but that did nothing ,only made me swell up and put on weight! So sorry for the moan, but the last 2 years have been difficult. I rest a lot , then get up and try to live a life: YEARS OF THIS,first told it was M.E. UNTIL severe pain merited investigation. I went to ART SCHOOL FOR LESSONS and now draw and paint in different medium, love it. Thank you again, this forum will help me and I hope I can also help others too.

 

[Karen]

Welcome Aboard ... I am sure that you will get lots of HELP here from everyone !! Have a great time here and once again WELCOME !!!

 

[Angrybird]

I was on this med for months before I had issues with it.....out of interest are you given a pre-med before the infusions are started? Have you ever been on Humira at all? This has been found to be a successful alternative for folks who have had issues with Infliximab.

 

[Honey]

Hi Angrybird, No mention of Humira in my consultations. It looks like Infliximab
is the last option. Yes I am given a pre_med drip before the actual Infliximab infusion. I did become very swollen during my last infusion. The nurse had to get a ring cutter to cut off my mothers ring. I wonder why?
I am hoping this is only a blip, as I have been pain free but tired on Infliximab. Thank you again for quick response. It helps to talk to someone who has been there.Best wishes

 

[Honey]

Hi there, Happy Easter to everyone. My infliximab treatment is on hold whilst I take Prednisolene for pain in my limbs. Crohns is obviously,unfortunately,an illness that does not remain static !

2

 

[Angrybird]

Happy Easter to you too I hope your joints can soon be feeling much better.

 

[Honey]

Hi Angrybird,
Thank you for replying. My main problem is the weakness I experience, running alongside the pain! Steroids have brought my strength back up, they always do! This is just a short term measure, until I go back on infliximab ,I presume? I have a very caring Consultant and am indeed blessed.
Have a lovely Easter and enjoy the Spring sunshine.
:ysmile: