Happy New Year everyone its been a while since we've logged on to the site but that's good cos Jaz has been doing really well .... up til now.

Jaz is on flixi + aza (with Fastab + anti sickness when needed) 9th flixi is next Friday. Since last summer Jaz has had itchy dry skin which has then become infected and looks red and angry and is really uncomfortable. GP has tried to treat but then got referred to local hosp. Jaz has been on 2 weeks of antibiotics along with steroid creams, washes and grease!! Saw a consultant yesterday and they now think its psoriasis. They're not sure whether this is caused by the flixi.

Does this sound familiar to anyone on this forum? My golden girl is only 13 and this is just something else to cope with. Without breaking her confidence too much this skin condition is in an intimate area. She hates her body at the moment anyway. Although flixi has been good she is still cursed with Crohnsy symptoms all of the time - painful joints and tiredness and anal tags but sadly you all know what I'm talking about.

Just to top this my babe actually started her periods this week. I'm 43 and I don't like all the medical check-ups us girlies have to go through and to watch my babe go through the checks she's had this week just breaks my heart. She's so brave. She's lost all confidence and just worries about everything. Sorry to have a dump on you all.

Would love to hear from anyone with similar symptoms. Take care everyone and bye for now xxxxx Jaz & Lis

hey mellissa , sorry to here yur lil girl is having such a ruf time with it all. i my self am going through a massive flare up and am fed up to the back teeth of constantly being shatterd etc. as regards, to the infliximab, ive had experience of this drug, i was on it an unfortunatly the only things it did for me were negative, it temperarly knackerd my liver ( this is back to its normal self now ) and it also caused my hair to fall out. i asked my IBD nurse if there was a link to flixi an hair loss, an she said the drug instructions dont mention anything about hair loss in the side effects section, its funny tho that as soon as i came off the drug the hair loss stopped. what im sayin is, this drug is reletivly new i think, its only been around for about 15 to 20 years so my theory is do they know all the side effects etc ? that i carnt answer, im sure you already know but just incase you dont, crohns can cause skin problem , equally as it can cause joint pain ( which i suffer from regular) , problems with the eyes blah blah blah , hope this has been slightly useful an i hope yur daughter feels better soon , take care x

Hi chezzy lad - thanks for your reply sorry to hear about your flare up. I know its not me with Crohns, but after spending last Christmas in hospital with Jaz when she had big flare up, I know how down you can get when everything starts going wrong. I hope your IBD people are able to help. Jaz will be in hosp next Fri for clinic app 1st and then infusion, so at least I will get a chance to speak to consultant about whats been going on. Thank goodness for forums like this it really helps to share experiences and I thank you again. Take care and bye for now Jaz & Lis

Hi Melissa,

Ben and I are in the process of deciding between infliximab and further surgey(colectomy and ileosotmy!! gulp), talk about devil and deep blue sea. Anyway, i saw in the info on the nacc site that psoriasis is a known side effect of the infliximab. Sorry she has another problem to contend with.

Do you mind me asking you about the infliximab? I am worried about some of the more serious side effects I read about when researching it. Did the hospital give you lots of info/statistics when Jaz was going to go onto it? How do you feel it has been for Jaz and how often does she have it?

Sorry for jumping onto your thread but thought I would ask.

Thanks,

Mary and Ben

Hi Mary & Ben

Good to hear from you. We were told that there could be possible reactions every time you have a flixi infusion, thats why you stay for a further 2 hours after its gone through. I have to say Jaz hasn't had one (thank goodness) but it looks as though the psoriasis could be a side effect. I can tell you more on Friday when we return from Jaz's 9th flixi. I've been looking on the internet and there are articles about the psoriasis connection with flixi on the British Medical Journal site. I've only read extracts as you have to pay for the full draft. I thought I would wait and see how much info I can get from the consultant before I dig and delve myself! Don't want to get too paranoid about searching the web.

Flixi has been really good for Jaz but she still has pains in joints, tiredness and bleeding. She probably goes to the loo 2/3 times a day (before it was 10+ a day). The infusions are every 8 weeks although they did think we might change to 6 weeks. The psoriasis could change whether they carry on though. Jaz is also due colonoscopy etc in Feb so everything is a bit in the air at the moment. The only concern I have is how long is it safe to have it.

Will let you know how we get on on Friday. Take care and bye for now - Jaz & Melissa x

Thanks Melissa/Jaz,

Thanks for the reply, it's good to get info from people ging through it.

We have been to see consultant today and looks like we are going to give infliximab a try. The only other alernative is the surgey and ileostomy and I don't think we are ready for that route just yet. will keep you up to date with how we get on.

Thanks again,

Mary/Ben

Hi Jaz and Lis,

I was just browsing the forum for the first time today when I saw your post and felt I had to write to you. I have had Crohn's for 7.5 yrs and started inflixi last June. For the first couple of infusions things were going well, but then I started to develop very dry, sore and itchy skin. At first this was in small patches on the tops of my legs and in my armpits and my GP thought it was probably eczema and gave me various strong steroid creams and emollients as well as antihistamines to ease it. Unfortunately, despite this things worsened over time. About a week after my fourth - and last - infusion, my whole body became extremely swollen and my skin was red raw all over, I lost about 50% of my head hair, most of my eyelashes and a lot of my other body hair. I developed belpharitis in my eyes and had skin infections around my bum and front bum (!) because of the cracked skin. I was in a real mess. Anyway, needless to say the docs immediately stopped the inflixi and put me on high dose steroids to treat the reaction.

That was several months ago now and it has taken a lot of time to work out what happened and to sort things out. The docs thought I might have either infliximab-induced lupus or a delayed hypersensitivity reaction. Both are really rare (less than 2% chance of this happening), but in the end we came down on the latter. Thankfully the steroids have sorted me out relatively quickly and I have just started on adalimumab. It's 50/50 whether the same thing will happen again, but I am hopeful it'll be ok as the infliximab was beginning to help my Crohn's.

Now, I really don't want to scare you and your daughter as it is unlikely anything as extreme as this will happen, but I felt I should let you know. I tried all kinds of things for my skin but it just didn't improve, so if what you're using now isn't working, or if the psoriasis seems to worsen after an infusion, that's a good indicator that there may be a reaction going on. My consultant told me that they have had cases of infliximab-induced psoriasis before (this isn't what I had), so I imagine that may well be the case with Jaz. This will go away if treatment stops, so it may be if it worsens or if it becomes too much to cope with you may well have to stop the drug. Not great news, I know...

I'm really sorry I can't give you better news. As I say, I don't want to worry you, but I know when I was going through this I was desperate to know if there was anyone else in a similar situation. Hopefully they'll be able to treat the psoriasis and get it under control with other means.

Feel free to ask if you want to know any more and apologies again if this sounds alarmist. I know many people for whom infliximab has worked wonders and actually know very few who've reacted badly, so fingers crossed that'll be the case for Jaz and others.

Lucy x

Hi Melissa and Jaz

I have only recenty joined the forum myself, I have crohn'sand my 17 yr old daughter also has it. She is also experiencing a bad flare up at present and has had this horrible illness since age 11. I fully understand how you feel, it is so awful having a child with this, I myself started with it at age 15 and I know what the tests and problems are like. When I had it the choices where surgery or steroids but mine was so bad I had two resections and after suffering for the first horrible and painful 5 years I have been relatively well. When my daughter was diagnosed I was completely destraught and blamed myself for her getting this. She has had it bad and I understand how hard and painful it is to watch your beautiful daughter suffer in this way. As a mum we are there to protect them but in this situ there is nothing you can do to make it better for them apart from staying positive and giving them lots of love. My daughter took infliximab for 4 years and for her it was a wonder drug that kept her relatively well and free of symptoms, she had no side effects, however she has recently stopped responding to it and developed anti bodies to it. She also has no confidence and no self esteem and because I think she felt the drug would last forever it has been a huge shock for her to go back to square one. She copes amazingly and got 10 GCSE's last Aug I dont know how
she did it. She also took her AS modules the day after she found out the bad news. She is resilient in front of friends and at school and wont tell friends anything because she is embarrassed about toilet situ etc. I just wish she had a female friend of her own age who has it that lived in Mancester. After being at school she just comes home and collapes, she has stopped going out socially as she is scared she will need the loo. She starts humira injections on 27th and I just hope it will work and make her well again, she has also gone back on azathioprine it did nothing last time but they have doubled the strength. I worry about her taking all these drugs and the effects they may be having but it is a balancing act and without them the quality of their lives is so bad that there is not really any choice. I hope infliximab helps your daughter and that you find something that gives her a quality life. Good luck Julie and Cara x

Hi Everyone,
   I have been suffering with crohn's for for apprx 15 years, i have been on infliximab for 1 year and have suffered with hair loss ( almost completely) due to dermatitis and skin blisters and rashes on my legs and hands. Because of this my consultant has informed me that there are only 2 options left: either complete removal of my bowel or there is a Proffesor at Nottingham that has being trying some kind of implant, i am not sure of the details at the moment. If anyone has any information regarding this procedure, i would be very grateful if you could let me know.


Also, chezzy lad could you tell me if your hair grew back or not?

Hi Adrian

Can't help you with the new treatment, I'm afraid, but I can tell you that after a course of high dose steroids my hair has totally grown back and my skin has also returned to normal. Haven't the doctors mentioned adalimumab to you? I started this just one week ago, so can't say whether or not I'm going to have the same side effects yet, but fingers crossed. People are less likely to react to this as it's fully human derived, unlike infliximab which is part mouse-derived.
Hope this helps,
Lucy

Hi Lucy

MY daughter starts adalimumab on weds and is anxious. Did it hurt, how long does it take to do etc.

Thanks Julie

Hi Julie

I can totally understand how your daughter feels. After my terrible reaction to infliximab, I was very nervous about starting the adalimumab. It's very early days for me at the moment, so too soon to tell if I'll react or not, but so far so good!

The whole process is very straight forward and is a lot quicker than infliximab. My IBD nurse went through everything with me in lots of detail before hand and I received a pack full of info on how to do the injections, as well as a DVD and other hints and tips which were really useful. Hopefully you'll get the same. Unless your daughter has a latex allergy, it is more than likely she will have a pen rather than a syringe to administer the injection. This looks a lot less scary and is really easy to use! The nurse did my first 3 injections for me and I did the last one myself. Basically you need to do it in your stomach or thigh (stomach tends to be better unless there's lots of scarring etc) and you simply need to pinch an inch (!), hold the pen against the skin, press the button on the end then hold it for about 5-10 seconds. As the drug goes in it is quite painful, but I assure you this is over pretty quickly and mine didn't hurt at all afterwards. It is apparently quite common for people to get a slight skin reaction around the injection site for a day or so afterwards (rash, swelling etc), but this can be helped by applying ice before and afterwards.

I had 4 injections first off, but that was a rapid response dose. Conventionally people start with 2 injections, then go down to 1 every other week. Once they are happy with me doing it myself, I will be able to start doing it at home, which is great. I think you can train to do it too, if your daughter isn't happy doing it herself. So that's basically it! It's really quick -I was at the hosiptal for less than half an hour and most of that was going through everything before hand.

I hope it goes well for your daughter. Feel free to ask if you want to know anything else.

Lucy x

Hi Melissa,

This is my 1st time on this site but after reading your post I thought I would share my experience of infliximab I am now immune to it but I went on it when I was 16 it really helped me when I was really suffering from a flare up I would feel better 4 days later everytime but after the 1st few time I got a skin rash that covered my whole body from my scalp to my feet it made my hair fall out. I was reffered to a skin specialist who prescribed creams once they took affect the rash cleared up and my hair grew straight back apart from that I never had any problems I was very sad when it stopped working because it really did help me. I have now tried every medication that comes after it with no luck I am now on salidomide which comes with lots of side effects. So if infliximab is working for your daughter you should stick with it

Donna xx

Hi, like a few people on here I suffered a severe skin reaction on flixi, although it worked wonders for me for a good few years before that. The skin problem went away entirely about a month after I stopped which was amazing because it was BAD (itchy, red, weepy, scales on scalp etc.).  I then tried Humira and luckily didn't get the same reaction, however my disease had progressed to the point where it no longer worked for me.

Melissa - like your daughter I was diagnosed young and it totally destroyed my confidence. My puberty was delayed until I was 16 and I had to have a liquid diet and a stomach tube. I was undeweight, flat-chested, very small and I all wanted was not to feel different from my peers when I obvioulsy was. I did get through this though and now I love my body, scars and all. Your daughter will get through it too, eventually - like me she's very lucky to have such a supportive mum.

Julie - at school I was also very embarassed to tell friends and still years later only my very closest friends know the minimum details. It's not really a condition that's easy to talk about! I found exams very hard as the nerves just made the toilet situ worse. We made my school fully aware of my condition and that I may need extra time for toilet breaks - they were brilliant and very discrete. After a hellish puberty I made some very close friends and started socialising more. As i relaxed I realised I could go out shopping or clubbing without my disease controlling me and I grew in confidence. I hope humira works for your daughter, I am horribly old at 23 but if she wants to email me she is very welcome.

Hi everyone

Just wanted to say a big thank to everyone for your kind words and support. Well Jaz had her flixi last Friday and by mistake they gave her a double dose! We spoke to the consultant in the morning and he agreed that the psoriasis is either flixi induced or Crohns; so either way its not doing its stuff any more. We agreed that until we got the scrape results back this would be Jaz's last flixi. So you can imagine our horror when they were unhooking Jaz's line and mentioned the double dose!!!!! She's OK but suffering from lower back pain so much so that she didn't know where to put herself last week and stayed at home. If the back pain hasn't gone by next week I've got to phone hosp and they will arrange an MRI scan, she's due a scope in March anyway so hopefully we can get some answers then. She's so tired and fed up and a bit scared by the MRI (needle and noise).

Jaz has gone to stay with my mum for the weekend and I am going out with a friend to the cinema to see Mel Gibson film???? haven't been out for soooooo long don't care what I watch. I'm missing Jaz already but I think the break will do us good.

My best wishes to all of you and hope you all have a fab weekend - take care guys and bye for now xxxxx Lis

Hi Jaz/Melissa,

Just wanted to say that I hope things pick up soon and that Jaz feels alot better.

Hope you enjoyed the film,

Mary.

I had a course of infliximab last year, and had no problems.  The consultant stopped at 3 infusions.  I'm now told that I cannot have any more steriods - I had been taking budesnide and it did help.  I'm currently taking methortrexate as I couldn't tolerate azathioprine.  I'm now about to restart infliximab, and having read this thead have started to feel a bit anxious about whether this is a good idea!!!  Are there any other alternatives?  Devil and deep blue sea..................springs to mind.