infliximab not working and legs not working very well either

hi all fellow BD ers just a quick question i am on the max dose of infliximab 10mgs per kilo but its not working for me now its like i am burning it out of my system within 10 days of getting the infusion as you all know when i first started on the infusions way back in march 2013 it was like a miracle drug everything was better but as time wears on and as you all know with bd becoming complacent is a big mistake but i took the ups while it was there but the 5mgs started to wear off so it was 7mgs then and now 10mgs every 28 days and as i said the body is saying no i was up to see the physio last week before i got it and she was horrified at the condition of my legs and feet despite the fact i was telling my rheumy that they were in trouble for months so i left on crutches and i am due back there thursday to see the occ therapist and the physio and i have been told that its for a wheelchair fitting im so bloody upset at the thought of this as i have been fighting hard to remain as independant as possible but i am only 48 and dont want to give in i know there are a lot worse off people than i on this forum how do i deal with all of this stuff walking is a no no even using the crutches was bad enough but i suppose that i am just so frustrated that the docs didnt listen to what i was telling them any advce as to what to do regarding any of the above and the rheumy has told me that after the infliximab stops working we have run out of options not a good prognosis sorry for the bad news story as i am normally more upbeat

thanks chris

18 Replies

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  • Oh, mate, you don't have to be upbeat all the time - not a one of us can do that can we. Not even Pollyanna me, no matter how hard I try. I do sympathise with the leg and feet thing. I've never really suffered in that way until the past couple of weeks but just recently they have been excruciatingly painful, yet I know they are still not as bad as yours because nobody has suggested a wheelchair. In fact, the one down-point at Brum was that I had to walk to x-ray across what appeared to be a building site with feet that were swollen to three times their normal size. It was like walking on razor blades. The reason for the x-rays? To make sure the bones in my feet weren't broken!!!

    I forgave them that - I'm simply telling you so that you understand that I empathise. And 48 is young! I'm an old biddy - just entered my last month in my fifties - and still begrudge giving up my mobility and freedom to this wretched disease, so goodness knows what you must feel like!

    You rant and rave against it all my darling - do it here, in the safety of a group who understand and who, mostly, know you and who you can trust. We'll cry with you - and when you feel a little bit better, we'll laugh with you too.

    xxxx

  • thanks for the nice words and to think they told me that they had never heard of bad legs and bd i will take the chair but its a hard one to get the head around

    regards chris

  • So sorry the infliximab isnt working out for you. I too am having infusions and have been for over a year now. I too am still having great difficulty with walking and am now just starting neurophysio next week.

    I have a wheelchair but do not use it all of the time. I cannot use crutches or a stick as I am too weak to use them anyway.

    My drs were concerned that I would cause myself more injury trying to use them and so as I said I just use the wheelchair when it is distance or I dont know where I am going or how much I sm going to have to do.

    I have noticed by using the wheelchair, I can do more and my stamina lasts better.

    The main thing is that you can use it as much or as little as you want as you are in charge of it.

    My world without it was just getting smaller and smaller. I just get in and out of it as much as I like. For instance when shopping I tend to park it up and try and walk around. When going to a restaurant I cant park outside, I use the wheelchair to get there and tjen get out.

    it id a bit difficult to get used to bringin it but you may find iy opens up your life to more possibilities.

    Hope the physo helps ☺

  • thanks andrea it is a great way to use it i am just havin a hard time getting my head which is swollen from pred around the down hill slope they dont know whats wrong with the legs so they are lost and as you know when they are stumped we are goosed

    regards chris

  • Know what you mean by drs not knowing why your legs are weak. I have had the weak muscles going on for many years and fought hard to stay out of the wheelchair but it came to me having to give up driving bevause of brain problems and eyesight and also lost my balance. I became virtually house bound and so gave into it. But as I said still am the boss of it and my husband who has to push me

  • ha ha like the last bit i see what your sayin andrea and i will have just to get used to it its better than being on the crutches they are of very limited use my bloody hands are wrecked and i had a lot of pains both neuro and bones so i just shuffle about with them thanks for showing me the positive side if there is one regarding the chair keep goin is the key and try not to let it be the boss but in my house my wife is the boss and thats for sure

    lols!!!

  • Hi

    is there a possibility you could change to humira. i have heard that sometimes a change like this can help.

    I have is particularily good for joints, the physio did a follow up check on me this afternoon and said it was like different joints. i also benefited from hydrotherapy and am now doing exercises in a local pool (and even the sea on 2 occasions recently).

  • hi sian i was on humira before and it didnt work and i am getting sent to the hydrotherapy pool so heres hoping thanks for the info sian

    regards chris

  • Chris I'm so sorry to hear your news. I had a big loss of leg function when I first became unwell ....over a year before Behcets was mentioned. I rehabbed back apart from left foot drop which has caused me a few really nasty falls. Have your legs wasted? I'm a bit confused as to whats happened. Sorry to seem nosey but I'm genuinely interested.

    Ps I agree that it's perfectly ok to come on and say how upsetting it all is....I'm sending you a hug...Jill x

  • hi jill i dont know whats happening my feet feel like they are broken and my calve muscles are swollen to bursting my knees and hips are really swollen and i am getting sharp pains all over my legs and i get a strange sensation like something is crawling under my skin so its a bit of a mystery thanks for the hug needed it thanks jill!

  • Ahh I started off with an unexplained bout of transverse myelitis ......which caused all those prickling weird sensations for months. (Other symptoms started after that) Do you feel all the small bones in your feet sort of crunch as you try and place your feet and make a step?

    I don't suffer from swelling at the joints though....that sounds absolutely awful. So sorry you're having a rotten time Chris...xx

  • Antibodies can be built against Infliximab due to the mouse part. Have you tried humira or enbrel? They may work now. Or if you have had them there is interferon, cyclophosphamide and others. I feel for you. It can be extra hard dealing withflaresafter remission. I live in denial during remission and always trust it won't come again! There are other options out there.

  • hi zebra i didnt know that that re infliximab i tried humira no joy i am like a bloody fool chasing the docs nothing worse than waiting for the flare to happen fingers crossed for some relief

    regards chris

  • Hi Chris

    I know how you feel. (Don't you hate it when non BD suffers say that).

    What I mean is I also have huge problems with weakness and pain in my legs and arms, and so far haven't gotten anywhere with the myriads of treatments. I was measured up for an electric wheelchair about a year ago but am still on the waiting list.

    I found it very upsetting and confronting at the time but as you said it is a matter of getting your head around it. When it does arrive I intend to use it much the way as Andrea has described - in a limited way. Lately my legs have been so weak and painful I feel like ringing and seeing where I am on the waiting list.

    What did arrive about a month ago was a hospital bed - brand new, electric to raise the feet higher etc (absolute heaven). I think once you have your head around it and have worked out how you will best utilise it, when it does finally arrive you will find it helps rather than hinders you.

    Cheers Lesley

  • hi lesley its a new symptom and there seems to be a lot of head scratching going on as the rheumy said they never saw it before but as always this forum pours water all over that statement sorry to hear that you have not been well hope u get sorted with your chair soon i am starting to see the better side of the wheelie as it is my view now its just a tool to help me get around i agree with andrea re this and by gettin all the replies my view has deffo changed i have an appointment today and all will be revealed fingers crossed toes crossed i will post when i finish up after the hospital

    regards

    chris

  • Hello Chris,

    The answer to your question is, yes, you can get used to Infliximab so that it doesn't work any more. I am in the same situation as you at the moment, and have been taken off the drug. Presently I am having an eight week 'cold turkey' so the consultant can sort out where to go next.

    I have terrific problems with my legs. They are so painful I cannot walk more than a few yards. This is one of my worst symptoms of BD. I am a lot older than you (66) and I feel as if I have lost my independence. I am so lucky to have a supportive husband who is willing to push me around in a wheelchair, and I don't know what I would do without my mobility scooter. The nearest shops are about half a mile away, and there is no way I could walk there and back.

    This is all very sad, because I used to play tennis and badminton regularly, would think nothing of going on a five mile jog in the evening, and had the energy to nurse, run a home, do the garden and look after two children.

    I hope the treatment you are going to get helps you. This blooming disease is a real rotter.

    All the very best,

    Suzanne xx

  • hi suzanne i really feel for you i was very active up to two years ago but every week i lose more mobility the infliximab was great at the start but now has stopped working its a right setback not lookin too good for the future if this is the way its heading more and more flares less and less movement and then more steroids added to the mix i look like a bloody moon faced pot bellied pig lol 19stone and rising started off at 16 stone i suppose there is only one road with this condition and we have to travel along it its good that your hubbie pushes you along literally i have great support here so if i end up in a wheelie i will have a few pushers available maybe i could rent them out thanks suzanne x

  • Hi Scruffy,

    My daughter has been on 4 weekly infliximab for about 2 years now. At the start it took 3 months to kick in but when it did my daughter said "Mum my new medie is working I feel bran new and I don't feel all the pain". She was singing and laughing, the first time in a year. After three years I have been informed that it has failed. Jaida is on steroids and unable to get off then. Like others, she has gained weight but to be honest the last 3 weeks she's been a great deal better than the past 4 months. I have asked to keep all medication the same for now as I'd like her to enjoy the break. We have had a long hot summer but also just about to turn 14 it may be hormonal changes. The dr's think her body use to Infliximab. The Rheumy has a plan to change to Humira in September as this has been a good month for my daughter over the past 8 years of having BD.

    I'm nervous about a change and the chance of a reaction but things have got to improve for her.

    Good news is a had a lovely lady on this sight who informed me about a drug called, Otezla. I think thats how you spell it. My Rheumy went to a conference and said it's having great results but only in trial form and they haven't tried it on children yet. Now for my daughter yet but possibly for you.

    All my love, it's OK to be cranky about BD its annoying and at times scary.

    My daughter in the past has had terrible foot and leg pain. The Dr's explained it as the spine was inflamed pressing on her nerves and it was a referred pain? In not sure I just know she spent 2 months in a wheelchair and with determination, pool and normal physio she is ok.

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