Crohn's Disease

BrianJD

lizabbey7 wrote: »

I have been on humira now for 16 mths without a problem, did take 6mths for me to really see the benefits so I was still on steroids, at present i take immuran & humira, 2 weeks ago I got a viral infection so I have had an injection in 3 weeks, the viral infection seems to be gone but I have very bad aches & pains that I never had before, my hands and feet especially I cant even button or zip up a pair of trousers its that bad, has anyone else experienced this due to missing injections??? have contacted humira and I am waiting to hear back from consultant....if anyone has experienced this I would gratefully appreciate any innsight.....

Hi

I've been on Humira now for about the same time as you and I have missed several doses due to colds, sickness ect. I do suffer from joint pains and I'm currently on pain killers for arthritis in my knees but I don't think it's from the humira. From my understanding it is just a result of the crohns and medicines I've taken over the last 12 years.

Hope you feel good soon

Brian

Richard Dower

I'm back in hospital :-(, things escalated the last couple of days. Yesterday morning i got severe cramping pains and then started passing blood. I never seen blood before in the last 16 years of Crohn's....i'm quite concerned.

Straight into A&E, white count elevated, i'm not sure how much blood i am loosing but they had me cross matched just in case.

Docs say Humira might not be working and want me back on steroids :-(
Sucks, i now appear to have inflamation in two seprate places, things seem to be escalating....and my past experiences and medical history seem to follow a downward spiral pattern.

I think i'm gonna be in longer this time, minimum 10 days....think myself 14, colonoscopy deffo taking place now, when it rains it pours.

Colmm23

Sorry to hear bout your situation Richard, its a right pain when you just land back in hospital at the drop of a hat. I think it has happened us all at this stage and usually we come out a lot better than we went in.

It always seems to take a few weeks to get it under control and as my doc told me before a week is a very short time when dealing with chrons while it feels like an eternity to us.
Hang in there and dont stress yourself too much.

lizabbey7

Hi BrianJD thanks for reply,
things have eased a bit have had 2 treatments of the humira since but its still not perfect, dr wanted me back on steroids but I have put that treatment off for the moment as things are improving....so fingers crossed

lizabbey7

BrianJD wrote: »

Hi

I've been on Humira now for about the same time as you and I have missed several doses due to colds, sickness ect. I do suffer from joint pains and I'm currently on pain killers for arthritis in my knees but I don't think it's from the humira. From my understanding it is just a result of the crohns and medicines I've taken over the last 12 years.

Hope you feel good soon

Brian

thanks brian really appreciate it

Richard Dower

Humira ans smoking?....DOC SAYS I HAVE TO QUIT, cold turkey....says the effictiveness of HUMIRA REDUCed by 50% DUE TO SMOKING?, any thruth in this?

lizabbey7

HI Richard,
I was told the same before I was put on the humira, and I did give them up more or less cold turkey but i think I was in the right mind set to do it, I know previously when I got a flare I felt cigarettes got me through it, they acted as a relaxant if that makes sense, no matter what treatment you are on the Dr.s are always going to try to get you to give up smoking, I was in A+E once with a flare and the I overheard the nurse saying that "what did I expect, I smoke, send her home" not a nice thing to hear when you are ill, you feel like lying then and saying no I have given up......hop-e this helps, Liz

The_Conductor

Apparently there is a difference in efficacy between Crohn's and UC patients- if you smoke with Crohn's- it is both a significant causal factor in flareups, and is also supposed to significantly reduce the efficacy of Humira. UC on the other hand- actually seems to be better controlled in smokers (??) but the reduction in efficacy is similar.

Richard Dower

I'm smoking MORE since i got out of hospital last Thursday, i had a FOURTH admissiom, Odema....went into a depression spiral, total basket case for three days....things just went pear shaped, ASKED to see a psyche consult, they put me on Ativan and Zispin + sleeper.

I'm pretty bugger right now....i was coping ok, but i just fell apart!

lizabbey7

Richard,hope your doing a bit better...in know its hard to keep it together...ive had my fair share of falling apart and you feel worse because its uncontrollable...I really do hope you are doing better

Ush1

Just to clarify, what do people mean when they say a "flare up"?

I basically had diarrhea for 2 years, was then diagnosed. I was then given steroids and it stopped but now that I am off them I'm just on Asacolon and still having diarrhea. Am I just in a constant state of flare up?

The_Conductor

Ush1 wrote: »

Just to clarify, what do people mean when they say a "flare up"?

I basically had diarrhea for 2 years, was then diagnosed. I was then given steroids and it stopped but now that I am off them I'm just on Asacolon and still having diarrhea. Am I just in a constant state of flare up?

Hi Ush-

Most of us have pretty constant diarrhoea- in my case when I say 'Flare-up' I mean the excrutiating pain from an inflamation/blockage etc- not the constant toilet trips at all...... I'd also include the low grade fever- and constant vomiting in this category too.

Ush1

smccarrick wrote: »

Hi Ush-

Most of us have pretty constant diarrhoea- in my case when I say 'Flare-up' I mean the excrutiating pain from an inflamation/blockage etc- not the constant toilet trips at all...... I'd also include the low grade fever- and constant vomiting in this category too.

Hi smccarrick,

That's abit depressing I 'spose. So generally there is not much relief from the bathroom trips? I can honestly say I don't think I've ever had a flare up really but apparently I have the worst type of Crohns. I'm on Asacolon at the moment but for some reason the consultant is reluctant to put me on Imuran. He said it's better to start taking it at 28 than at 25?

The_Conductor

Ush1 wrote: »

Hi smccarrick,

That's abit depressing I 'spose. So generally there is not much relief from the bathroom trips? I can honestly say I don't think I've ever had a flare up really but apparently I have the worst type of Crohns. I'm on Asacolon at the moment but for some reason the consultant is reluctant to put me on Imuran. He said it's better to start taking it at 28 than at 25?

Hi Ush-

everyone really is different. Some folk may get away without having to be close to a bathroom at all stages, and carrying fresh underwear in their bag every day- other folk get a tough time. You can't automatically equate someone else's experiences with your own- you may be lucky, you may be unlucky- you just don't know.

I was on Imuran for 6 years- but have been totally off it since November- when I suddenly developed a hyper sensetivity to it, and my white cell count crashed. Going back to the consultant in early July- will see what happens then.....

I have no idea what the story is with 25 being a bad age for Imuran, but 28 fine- ask the consultant what he/she means?

Shane

Pepe LeFrits

Hi guys,

Reading some of the above regarding 'flare-ups' has given me a little bit of the heeby-jeebies; is it common for the disease to come back after being dormant for many years? I guess I've always known it could come back but reading some of the above posts makes it feel like it's only a matter of time. Does anyone know of cases where it never came back, or at least, only mildly?

I'm 27 now and have been in remission since my late teens, and the thought of it coming back is abhorrent. I can and do deal with minor symptoms on a regular basis but otherwise I feel great about my health. I was diagnosed when I was 10 and spent most of my teens constantly ill, frail, in and out of hospital. It devastated my self esteem; being convinced I was going to be sick my whole life. It took me a long time to reverse that thinking and the thought of it being taken away from me now after all that effort... I can't contemplate it really.

LucyBliss

I've been on Immuran since I was 23 and I'm 36 now. It's never done anything bad to my blood count (touch wood), though it was very ineffective when dealing with my last flare up where I went from being in remission to being incontinent, unable to eat much and got as skinny as a whippet. But in that case, my intestine got so inflamed and was so ulcerated as a result that it just had to be removed. No amount of medication was putting that thing back in order. It was seriously just dragging me down, physically and mentally.

Pepe LeFrits, I know how you feel. I've been doing so good since I got my illeostomy, the thought of being in any way sick again makes me want to cry, especially when I remember how bad it was last time. But there's every bit of a chance it'll come back mild as there is that it'll come back severe. I suppose all we can do is just live our lives in the meantime and keep going as best we can.
In that vein, I'd like to report that I took my guide unit camping this past weekend. I haven't camped in years and certainly never with an illeostomy, but it was fine. I had no problems with the bag and it was a very fulfilling experience for me personally. Also, my guides got first runners up in the cookout competition so it was a great weekend all round!

lip

Hi all,hope everyone doing ok.Haven't been on in a long time,so have to catch up later.
Its been 3 mths since the op,and I feel good,apart from adhesions,but it seems to be settling a bit,not too sore.Fistula has worsened a bit so there may be another surgery on the cards for that,seeing surgeon again next month to discuss it.Absolutely wrecked all the time though.Doctor wants me to go on ensure for a while,but no,been there,done that,YUCK......!I'm back to work Monday,have been off since last June.
Humira and smoking?Consultant never told me that,and I've been on Imuran for years now.Although he keeps giving me lectures about the effects of smoking on crohns patients.Well,he won't have to anymore hopefully,been off them for 4 weeks now,so proud of myself.I am 34 and have been smoking for 22 years,OMG!!!I don't find its made any difference to my health yet though,maybe too soon to tell,plus Crohns is in remission at the moment anyway.
Pepe,as Lucybliss says,everyone is different,so you may never get a bad flare up again.My consultant call mine recurrent Crohns Disease,so I suspect I haven't seen the last of hospitals and surgeons,but I will enjoy the time its in remission and not think about it.

Richard Dower

UPDATE ON ME; out of hospital nearly three weeks, woot!....my third humira dose this coming Wednesday 80mg, my consultant upped my dosage as my Crohn's is very "aggressive".

Appointment on June 4th, hopefully start to get off those damn Benzo crap, steroids....tapering down, 15mg now and Tuesday down to 10mg, should be off steroids in the next 2 weeks, i hope then my insomnia will start to drop off.

Emotional wise, doing much better, the relief of 9 years of remission/Crohn's free + four admissions + steroids + insomina + stress + hospital enviroment contributed to my "implosion".

Basically i was discharged at 6pm and by 10pm my legs had swelled up with Odema - back to hospital, that triggered a memory to my time when i was very very ill with the Psoas abcess, depression kicked in...it was pretty bad tbh.

Took me 2/3 days to snap out of it, but at home right now i'm back to myself....i hate hospitals, i hate being sick, i hate steroids, i was coping fine and quite proud as to how i handled things, upto seeing that Odema in my legs.

So i *hope* this time i get a good break and the Humira works, despite me smoking even more then before.....i mean, smoking more would still be a clear sign of stress, right?

I'm hoping once the steriods flush out of my body i'll cut back and i will 100% try either cut down further or quit. My doc tells me Crohn's + smoking = bad, but Crohn's + Humira....stupidity, 50% reduction in the drugs effectiveness.

I can't just dismiss that.

bluebell1

Was diagnoised with Chrons in 07, can honestly say i've never fully gone into remission, always one thing or another but nothing serious, no surgery. since Oct 09 things have been getting worse, just a feeling of unwell and not been 'right'. so all ended on friday with second colonoscopy in 12 weeks, steroids and imuran don't seem to be working and was told my only alternative is humeria. Have just been doing some searching on line and my god i've frightened the life out of myself! All thoughts and advice greatly appreciated:eek:

The_Conductor

bluebell1 wrote: »

was told my only alternative is humeria. Have just been doing some searching on line and my god i've frightened the life out of myself! All thoughts and advice greatly appreciated:eek:

Seriously- you have to stop going on the internet and looking up stuff like that- in the main you only hear the horror stories or the miracles- not what the average person experiences. You will terrorise yourself if you look up the worst case scenarios- and the worst cases do occur- but they are not the sorts of things that most people encounter.

Regarding a second colonoscopy last Friday- this is only effective if the inflamation is in the colon- as is the case with Ulcerative Colitis- and while Crohn's often does occur in the colon and large intestine- typically it starts in the ileum and can occur anywhere at all in the GI tract. If Crohn's is diagnosed- often a barium follow through or a CT with a contrast dye might be prescribed to chart its course over time.

Humira has been an absolute miracle for some people- while I'm not on it myself, I'd be very hesitant to refuse to take it in favour of other medication if my consultant prescribed it- on the basis of horror stories from the internet. I'm sure some of the folk here who are on it might be happy to tell you their experiences.

You need to discuss any concerns you have at the end of the day, with your consultant- he/she knows your personal case and details, and is better placed to offer advice to you- than searching for information on the internet...... The internet can be great- but when you start looking at the worst case scenarios or the side effects that can happen as a result of medication- you can totally and in most cases needlessly- terrorise yourself.......

LucyBliss

I agree with smccarrick. The internet is a fantastic resource but a lot of the time, people will only post their worst case scenarios and they might be sensationalised, you just don't know. Except of course for this thread where we are perfectly honest and give only the facts!

I've never been on Humira but I was on Remicade (which is the same kind of drug, only it's been out a bit longer than Humira and you get it via an infusion in hospital) for nearly two years. It really helped my symptoms and while never making me feel 100%, it got me out of the house and able to sit through films in the cinema without any problems. That for me was a great achievement!
If you have questions about Humira, I'd write them down and have them with you when you see your doctor. You can refuse any treatment you want if you feel the potential side effects aren't worth it, but it's important to bear in mind how you're feeling now, and the possiblity of having a better quality of life for the next while isn't something to throw away lightly. At least, that's how I felt when they told me about Remicade possibly causing this that and the other. I was so bad, I didn't give a hoot about something down the line, I was just so tired of being sick and feeling terrible all the time and not being able to live my life.

lizabbey7

hi I was just wondering has anyone been diagnosed with lupus as a result of the humira?? I have chrons and have been on humira since 2008 I have now been told my test for lupus has come back positive, in next week to go through everything but just wanted to hear from anyone that has it....

Ush1

Anybody find exercise makes their symptoms worse?

I play football and lift weights and sometimes the days after the cramps are worse, maybe speeds up the metabolism?

LOKITYR

Yeah, I think some forms of exercise really dont help, cycling and weights are the worst. I quit playing Rugby and doing weights cos the cramps became too much

Walking and swimming seem to be much easier on the system

LucyBliss

Back when I had a large intestine, walking used to ensure I had to run to a toilet. It was very annoying to be walking briskly and then half jogging to the nearest facility.
I suppose it depends on the level of exertion of the exercise that might not agree wiht your system and cause a flare up.

Richard Dower

Slight update, saw my consultant on Friday...she seems happy enough with my progress to remission, reducing Humira to one pen every two weeks, reducing to 5mg of Deltacortril on Tuesday....5 days later, steroid (insomnia inducing, head wrecking, manic craporama) free!

After that i taper off the Benzo's....wanna be taking as little meds as possible, but i'm doing grand, eating fine, keeping weight up, sleeping more each night and generally feeling more like myself :-)

God willing i stay like this.

BrianJD

Hi all

Hope everyone is doing better than they normally do. Just a quick one. I'm currently in remission on humira once a week. I saw my specialist 5 weeks ago and was given a stay of execution of 3 months before i have to go back. In the mean time, about 3-4 weeks ago i very quickly developed Guttate Psorasis all over my body. This is the first and hopefully last time getting this but i am slowly starting to clear it with a steroid cream. The question is, should i ring my specialist and inform her. Regularly she gives out to me for not keeping her updated but I'm not sure is it appropiate to ring the secretary and leave a message for her. What would you do?

Thanks!

bluebell1

Took all your advice and weighted up the pro's and con's of Humira with my GP and consultant and had my first injection today! Its only one injection every 14 days so i think that it is a relatively low dosage but i can't wait for it to start working:)

lizabbey7

having a bit of crap time of it since easter, chrons is still settled but not sure how long it will last, along with aches & pains my lungs & lymph glands are now inflamed I have x-rays, bloods, ct scan now I am going for a broncoscopy and they will take biopsies, has anyone been through this as a result of humirs treatment??? I know I have no patience, its just no one seems to have any answers, I was taken off the humira as they do feel it is related

geor

Hi lizabbey7,

Sorry to hear you are going through a tough time... It could very well be related to humira. I was on steroids and Imuran for quite a while and had to come off Imuran as I was suffering side effects... inflamed prostate...took me a long time and a lot of tests to find out what was causing it, and the couldn't really verify anything, but came off imuran and problem resolved itself...

Any of these drugs which impact the immune system are quite strong and can have different side-effects for different people.

Stay positive though, if it is a side effect it usually easily cured. take each day at a time and keep an eye on your diet and take good probiotics.

We all have down days, but positive thinking can be half the battle!