I need everyone to cross their fingers...

[hannah-rose]

...because my Humira is being delivered on Tuesday

After about 5 Remicade infusions I started having reactions and the drug isn't doing it's job (getting recurring ulcers) so my GI is starting me on Humira (already started on 6MP - was ill taking Aza).

The Remicade worked miracles but I'm so disappointed it's stopped working. I'm hoping so much that combined Humira + 6MP keeps me well. I'm sick of having a sore butt and having to take laxatives all the times.

I'm quite sceptical that it will work because Remicade has stopped working. Anyone with success stories to inspire me with positivity?

It's getting delivered to my office at work so that'll be amusing when the delivery guy rolls up with all these syringes. I think my colleagues will be a bit confused (it's a tiny office of one room with only 7 people). Still I'm quite excited!

I'm not nervous because I've already had Remicade and I know there's less chance of an allergic reaction with Humira. Not massively looking forward to self-administering it (I'm using a pen) but hey ho I'll just suck it up and get on with it I guess.

Is it particularly painful? If it's painful I can milk it and get my Mum to make me nice dinners and buy me gifts lol. I will probably be injecting into my stomach as that's my squishyist area will there be any marks or bruises?

Oh well fingers crossed that it does the job and I've found my right combination of drugs for the time being.

Hannah xx

 

[KayleighMeek]

Hey,
I came off remicade because of an allergic reaction and then went onto humira. Humira worked well for me for about a year it wasn't as an immediate relief as remicade but it still gave me an almost normal life. I had first two weekly doses and then was upped to weekly as I started having some symptoms.
The injections do sting slightly but not a great deal and it is quickly over. The only thing I found was the pens make a loud clicking noise and a couple of times it made me jump and I would end up missing the apprehension is deffinatley he hardest thing to ovrcome but once you have done it a few times it just becomes normal. Are you having a nurse visit you? I had a lovely nurse come from health care at home and she talked me through everything and reassured me. I had very small marks after the injections but some people have welts that come up after injection but I guess you could take an antihistamine if you did get these reactions.
Good luck with starting I'm sure you will be fine. Hope it gets you into remmision x

 

[crohns in blue]

Good luck! Hope all goes well

 

[heisenberg]

I just started it the other day. Had 4 loading doses to start with. Nurse did the first one and I did the other 3 with the pen. Hard to say if it will hurt or not. The 3 I did in my leg was absolutely fine, hardly hurts at all. However the one I did in my stomach hurt loads, that is the first and last time I will ever do it there! I think it was possibly because it was a lot more awkward to hold and press the pen and also pinch my skin while it was jabbed into my stomach, it was a lot easier doing it in the leg. I would definitely recommend trying it once in both areas and then going with the one that hurts least.

PS even if you don't find it painful just milk it anyway lol

 

[Gwen pippy]

Good Luck Honey, have everything crossed for you.
xxxxxx

 

[hannah-rose]

Thank guys Wow maybe I will try my leg then if you think it hurts less heisenberg. I'll ask the nurse which she thinks is less sensitive.

What meds are you on now Kayleigh? I'm worried that Remicade hasn't worked, and Humira may work for a while, but what then? I have perianal crohn's so they can't just chop it out and steroids aren't as effective for that area apparently, can't use 5ASAs on that area either, so quite limited to TNF blockers and immunosuppressants.

 

[EthanPSU]

Don't worry about it, I started it 4 weeks ago and was afraid at first but it's nothing at all. Just put it too your leg or stomach and YOLO!

 

[Dunbar]

heisenberg's right, milk it. And also on the injection site, try both. I prefer the stomach, it's also my squishyest spot I have ony bruised once, I have hit a blood vessel-ow and got to close to a hip bone-yeeeouch.
Don't forcast, you'll make yourself old. I do it every now and then and all I get out of it is, tired. You may do very well with Humira right up until you are ancient like me ;p

 

[KayleighMeek]

I am now on mehotrexate I take 25mg every week but I am still having problems with joint and stomach issues, but it is still better than no meds at all.
I have tried all medications and unfortunatley I am hypersensitive to most even methotrexate I have sore throat, enlarged lymph nodes and the feeling of being hungover even though I haven't had a drink. I am sticking with it a bit longer as next step for me is trials or surgery but I just have a feeling something is bubbling under the surface. Anyways enough about me.
I think you just have to try and it and fingers crossed this will be the one for you. I can understand your worry as I get this everytime I have a medication change. What other meds have you tried in the past Hannah? x

 

[Lawyerboy]

Hi Hannah, new drugs like Vedolizumab and Ustekinumab are hitting the market pretty soon. You could try those in case the anti tnfs are not working anymore.

 

[Lawyerboy]

Hi Hannah, new drugs like Vedolizumab and Ustekinumab are hitting the market pretty soon. You could try those in case the anti tnfs are not working anymore.

 

[michaelearnest]

Sending Good Luck from Ohio

 

[hannah-rose]

I am now on mehotrexate I take 25mg every week but I am still having problems with joint and stomach issues, but it is still better than no meds at all.
I have tried all medications and unfortunatley I am hypersensitive to most even methotrexate I have sore throat, enlarged lymph nodes and the feeling of being hungover even though I haven't had a drink. I am sticking with it a bit longer as next step for me is trials or surgery but I just have a feeling something is bubbling under the surface. Anyways enough about me.
I think you just have to try and it and fingers crossed this will be the one for you. I can understand your worry as I get this everytime I have a medication change. What other meds have you tried in the past Hannah? x

I've tried Infliximab, which worked wonders, and I tried Azathioprine but it gave me agonising indigestion, now I'm taking 6MP and get no side effects (I feel hungover today but that's because I was quite drunk last night haha not the drug!)

I'm hoping the combination of 6MP and Humira will be effective, plus making sure I never get constipated and generally take good care of the area. It's just scary thinking I'm 24 and could have this forever...

LawyerBoy - how do you hear about these new biologics? I've heard of certolizumab (or whatever its called), but its not in the UK yet as far as I know, are these other ones on trial?

 

[Lawyerboy]

Hi Hannah, my GI told me about these biologics because I failed all meds except Predisone in high doses. There is currently an international Ustekinumab phase III study going on which I will hopefully take part in this week. The phase III Vedolizumab study just ended; it should be released on the market in 2013.

 

[Z_Ghost]

Hannah
It should be ship to you in a Styrofoam ice chest so no one will know what is inside.
Done both the leg and stomach, seems to hurt a little less in the stomach.
Only hurts for 10 seconds so it's not that bad and it makes me feel so much better.
Icing the injection site seems to help.
Did I say it's helping a lot and no more Pred, been taking to much of that this year.
Hope it all goes good for you.

 

[0121crohnslady]

Hi Hannah-Rose.

I was on Remicade, i had it for about 5 months and had an allergic reactions to it, first nausea then it starting literally ripping the skin off my neck...so they stopped it and put me back onto Azathioprine, now the body is getting used to that and they are talking about changing meds again...

Hope that you manage with your Humira and it works for you...if im on it next will be picking your brains to see what its like...

good luck x

:rosette1::hang:

 

[hannah-rose]

Hey Lawyerboy, thanks for the info I'll definitely be keeping my eye on the research, it's good to know there's other things being developed.

Z_Ghost, thanks for the info too, I'm glad Humira's working for you and making you well. I've been told I have two doses on my first go so I'll do one in the leg one in the stomach and I can see which is better

Hey crohnslady, yeah Infliximab's a miracle but then you get allergic, grrr so annoying. I had a few doses then was sick and myself and nurses thought it was anxiety, but it happened again and i got a rash on my chest and my lip started to swell so they didnt want to risk it next time. it was ok they gave me pre-meds and did it at half dose but even so its not that safe is it. better to go with Humira and not risk a reaction.

I've just started 6mp so i hope it kicks in after a few weeks. I'll let you know about the Humira, I'm hoping it works cos I'm getting bored of being ill now...

 

[Samboi]

Good luck Hannah Rose. Hope Humira does the trick.
I find if I pinch my tummy fat hard enough - I don't even notice the slight sting of the needle!
Sometimes I leave myself a bruise - mostly nothing though.
Fingers crossed for you!

 

[0121crohnslady]

It's annoying isn't it, and how many people have said "don't you look well" to you, they can't see it so it doesn't exist. Fingers crossed that they can settle yours Hun x

 

[rygon]

Hannah do you have any other meds before the remicade? (steroids or anti histamines?) if not that may help

 

[hannah-rose]

Hey Ryan, the first few doses I didn't have any, was told I didn't need any, then the last infusion I had a reaction so they stopped it, gave me piriton and hydrocortisone, then did the drip at half rate (took 8 hours) and I was fine. I guess they could do that again in the future if I decided to try it again. Do you think I could go back to it in the future if Humira doesn't help? I've having the nurse visit Wednesday at 9am, I'm just so worried it wont work I feel so gross at the moment with these symptoms, it's making everything else so hard to cope with.