HUMIRA TAKING AGES TO KICK IN!!

by ASAD
(UK - MAIDENHEAD)

Hi

I have been on Azathioprine and prednisilone for 2 months - STILL HAD upset stomach.

I then went onto Humira injections 40mg 1 shot every 2 wks... been on this for 2 months - AGAIN bad stomach

now i'm back on prednisilone ( which causes weight gain ) and also back on 2 azathioprine and 1 HUMIRA INJECTION 40mg every 2 wks... dr wants me to do this for 6 wks and then see what happens - if again stomach is bad he'll go to 3 azathioprines...!!

he didn't want me to increase my humira - why? well too expensive he said....and he thinkt its not working..
although my blood levels have gone down...

did tell him well i have tried azathioprine + prednisilone for 2 months mate and nothing...but he reckons try it again but this time with the injections at same time..

feel i'm banging my head against brick wall - it does get me down..and basically i am disabled by this disease.. i can no longer go to cinemas - i never missed a film when at a cinema but recently i'd find myself running out to the toilet...due to chrons... also i can't go into town at lunch time in case of urgent need to go toilet...i can't even go into town wiht my girlfriend and send her to do shopping...

life's a killer!!....

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Humira and abdo pain


(England)

Ive been on humira for about 10 weeks now, i have felt rubbish since the day it started, headaches nausea chills constipation dizziness abdo pain and so on

my abdo pain just seems to be getting worse, i rang my ibd nurse she doesnt seem to think im sufferring with constipation anymore (if i am it is now mild) having looked at recent xray. The pain just seems to be getting worse and all the doctors want to do is reduce all my other meds to see if they are not causing the dizziness and pain etc but whilst doing this ive noticed my CRP tests are increasing every month and are already abnormal...

I know theres not much left after humira as theyve exhausted all options now except for surgery.
Has anyone else experienced anything like this, on humira or not.

I just want some form of relief

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Humira shots for Crohns Disease

by April Wooten
(Louisville,Kentucky)

My 9yr old neice was diagnosed with Crohn's Disease a few years ago.At times,she has had spells of passing blood.The doctors are now thinking of giving her Humira shots.My sister in law was told they can be painful.What are some of the side effects from the shot,and how does it help??

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Humira shots
by: Shawna-Missouri

i have been on the humira shots for almost a year. They have helped my Crohn's tremedously as well as my eczema on my hands is pretty much non existant since being on the shots. I have had no side effects until about 2 months ago I broke out in these bumps. They looked like mosquito bites and some were so large they looked like ringworm. They did a biopsie on a couple of spots and had to even send it off to another place for a second opinion. They said that all they could come up with was it was a side effect of Humira.. WIERD... Good luck!!!!
Humira
by: David

I just recently started on the Humira self injections and they aren't that bad. Its best to numb the sight where you inject with an ice pack for a couple minutes first. Good luck and keep healthy.
Humira
by: David

I just recently started on the Humira self injections and they aren't that bad. Its best to numb the sight where you inject with an ice pack for a couple minutes first. Good luck and keep healthy.
Humira shots
by: Kim

I just recently started taking the Humira shots. They are not any more painful then any other shots. I haven't had any side effects, in fact they seem to be doing me a lot of good. The only bad thing about Humira is that the first dose is 4 shots and you can only inject them on your stomach or on your thighs. The second dose is two weeks later and it is 2 shots. After that it is just one shot every two weeks.

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Crohn's controlled with Humira

I was diagnosed with moderate to severe Crohns about 3 years ago. spent the first year in out of hospital trying different combinations of meds. all would work for period of time then id have problems again. Finally went to dr who suggested Remicaid or Humira. Chose Humira for convenience and havent had any problems for last 2 years. Give myself a small injection every 2 weeks. recently had checkups and no sign of inflamation. in complete remmition. So suggest considering humira instead of remicade.

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on Humira 6 months just developed itchy rash on inner arm

by Tony
(SC)

Anyone had this issue? Rash looks like a bunch of red dots.

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HUMIRA

by Karen
(Scotland)

Hi I've had Crohns Disease for 22 years but since giving birth 7 years ago has not been settled. I've been told humira is my only chance of not having surgery. I have been to the hospital 3 times for the injection now but have felt no difference, how long does it take til you see a difference?

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Humira

by Shawna
(Missouri)

Is anyone out there on Humira and if so how is it working for you?

Thanks,
Shawna

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Humira
by: Shawna

Wow.. I will keep you in my thoughts and prayers. A lot has happened since I posted that. My body rejected Humira and I am now on my last option.. Cimzia... Hoping it works..
Humira Complication
by: Pete

Hi, I've been on Humira for a year now and have developed a life threatening complication because of this drug. I am 19 years old and have recently been diagnosed with a cancer called Hepatosplenic T-Cell Lymphoma and is getting worse by the day. I honestly believe i prefer the relapse of crohn's than i do of this cancer. It is a shock to me because i never thought i would develop a cancer because of treatment that is supposedly to make you better and symptom free. I am currently goin through my 3rd round of chemotherapy called cyclophosphamide and is not working at all. the cancer is too aggressive. My gp and gastroenterologist have said that this form of cancer is found in young adults and adolescents but is very rare. I'm obviously very unlucky haha. anyway, i don't mean to scare you or anyone but merely stating my experience and the facts that this crohn's medication has caused for me. doesn't mean that you should stop your treatment because for 95% of people with crohn's it's beneficial and provides a better life :) I wish you all the best

Peter
On Humira
by: Anonymous

Hi Shawna -- I'm on Humira and have been for about two years now. It has provided relief of my symptoms and I can usually feel it "kick in" within a day or so of the shot! I was on Remicade before that, which was like a miracle drug for me, but I built up a resistance to it and eventually it stopped working for me. The Humira has been great! If your doctor is suggesting it, and willing to put you on it, and will write a letter to your insurance company (it's expensive!) I would say go for it. As a sidenote, I even continued to use it during pregnancy (which kept me from being able to breastfeed but did not effect anything otherwise so far).
Humira didn't help
by: Anonymous

I took Humira for Crohn's disease for 6 months. I didn't get better. I got worse and I gained weight. I am sure that it may be helpful for some people but not for me.

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Humira For Chrons?

by Lizzie
(Lancashire england)

Hi i am 31 years old and have had chrons for the pas 12 years, i have already had 2 majour bowel operations and after spending 3 months in hospital last summer the 2nd operation hasnt worked, i have now been told i may have to have whats left of my colon totaly removed and a colostomy.
I have been put on the humira programme but dont know what to do due to already having a very low imune system due to steriods i am currently on 40mg daily along with a cocktail of medication, i have high bp and fibromalgia along with malabsorbtion of liver bile salts, I Have constant pain and pass motions aroun 10-12 times a day, as you can imagine i am very drained but i manage to work and have 2 lovely children that keep me going but i would love to do more with them and am at the point of not knowing what to do next for the best?
The humira is a option but the side affects are quite serious does anyone have any comments for me?

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humira for crohn's disease

by Antoinette James
(Baltimore, MD)

my body and joints ache, have had 3 surgeries for crohn's and wear and ostomy. Now I am giving myself Humira shots, and my vision and joints are bothersome. How do I get some relief without my doctors prescribing me the pain medicine?? I feel like I'm losing all capabilities at times., It's hard to deal with getting out of bed, but I must work to pay and afford the bills for doctors and ostomy supplies. Is there any known cases of people getting Disability for this condition??
I am losing my teeth, strength in my legs and arms as well as my hands.

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this stuff is all bull shit NEW
by: Anonymous

i have had crohns for about 55 years and this stuff is not going to work. it looks like they say it will fix every thing. if you take it you could die. just live with crohns. the only thing that helps it dont get up set. nerves are what sets it off.
Hi
by: Anonymous

Im due to go on humria soon as nothing else has worked for me plus the refuse to-do anymore operations on me cause ive had so many already. So this is my last option really I don't know what to expect from having it I just hope it works for me.

I live in the UK so i get the Humria for free i also get my ostomy supply's free too. Sorry to hear you are not having such a good time with it all at the moment i hope things pick up for you soon & you start to feel beter
Humira for crohns disease
by: Barbie

Hi Antoinette

I dont know if it is different in the USA but here in England some people have claimed Disibility Allowance Benefit, not all are successfull but I am one of the lucky ones, its not much but every little helps. I was turned down at first but I appealed the decision. I wish you well as I know how much this desease can affect your whole life.
reply
by: sandra

You can get disability living allowence and a disabled badge.This allowence helps. Get the forms and fill them in. Good luck. X X

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Imuran or Humira for Crohns

by Kris
(Cleveland, Ohio )

Hi I am 22 years old and I've has Crohns for 5 years now. I've only ever web on Pentasa with some steroids when I am flaring. However they put me on Imuran two and a half weeks ago and I've been extremely Ill since. stomach pains, and nausea. I haven't vommitted but the pain and uncomfortableness is unbearable. I don't want to be sick on Christmas. I got married six months ago and I would very much like to spend my first Christmas with my husband healthy instead of in bed. My doctor told me to split up the dosage but it hasn't helped. I feel as though there is now sharp pains in my abdominal area. Almost like gas pain that I can't get rid of.

Is there a better alternative? Would humira be better and easier to take? I'm worried about cost but if I need it cost shouldn't be the reason not to get it. What are the side affects of humira? My doctor assured me that Imuran had no side affects other then the possibility of getting cancer. So obviously they lied and I would like to hear from everyone else what works from them.

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Humira NEW
by: Kris

Thanks,
That sounds good. With the exception of the holiday and weekends I usually give up sugar all together because of the side effects (weigh gain/stomach aches). And during the week I usually stick to a 1200 calorie diet. Ive been trying to work out 2-3 times a week for 45min at a time. I just hope continuing this or being more strict about my diet will help my weight stay as it is now. I am actually trying to lose about 5 pounds but it seems impossible as the holidays were filled with cakes and fatty foods. Thanks for all your advice this makes me feel better.
Imuran or Humira for Crohns NEW
by: Lydia D.


Pleased to hear that your doctor is doing something about it.

With respect to the weight gain. I would prepare for it, if you think that it is going to be a problem.

An idea would be not to buy anything sweet. So, no sweets, chocolates, colas and other fizzy drinks, no biscuits, no cakes hoarded at home. Ideally, you would cut out pure sugar from your diet completely. The likelihood of you gaining weight will be minimised if you also make sure that you include at least an hour's brisk walking/fitness into your day.

It is my experience that people who say that they don't eat much, are not counting all the calories they ingest and are kidding themselves. Don't let yourself be fooled that way. Keep a food and calorie diary and learn how many calories are in your food and adjust accordingly as you get better.

If you want cake then make carrot/banana/peach/apple/apricot cake at home. Halve the amount of sugar and use oil instead of butter or margarine - increase the bicarb.

I hope that the Humira works.
Humira NEW
by: Anonymous

Thanks for all the advise,

My doctor lowered my dosage but the side affects did not go away so I have stopped taking the medication and will be starting humira soon. However I am now scared that I will gain weight. My doctor says there's no weight gain side effects and it says online that it is not a side effect but on a few blogs I read that some people randomly gained 40 pounds while exercising and eating low calorie meals. If I gain 40 pounds I would look ridiculous!
Imuran or Humira for Crohns NEW
by: Lydia D.


You are having the same reaction to Imuran (aka Azathioprine, aka AZA) as I had.

Your doctor is irresponsible to tell you that it has not side-effects. It is a cytostatic, a toxic chemotherapy drug that works by killing off fast-growing cells. Granted the doses are lower than in cancer treatments, but how could it not have any other side-effects (except for potentially causing cancer)?

In addition, it is well known that there is a sub-set of patients that are not able to metabolise Imuran (prodrug) to 6-Mercaptopurine (actual drug/active agent). http://www.thedrugmonitor.com/azathioprine.html It is highly likely that you are one of these.

The Prometheus Labs in the USA have devised a TPMT test to determine whether or not a patient will tolerate Imuran. To be done prior to taking the drug. http://www.prometheuspatients.com/Products_Diagnostics.asp

As I understand it a low level of TPMT will result in higher drug toxicity, i.e. low intolerance to the purine analogues AZA and 6-MP. Your doctor should be aware of this.

Given your reaction, your doctor should immediately switch you to 6-Mercaptopurine. The chances of you tolerating 6-MP are a lot higher because it is further down the biochemical pathway. http://en.wikipedia.org/wiki/Azathioprine

I refer you to the clinical guidelines in your country. For example: http://clinicalevidence.bmj.com/ceweb/conditions/dsd/0416/0416_guidelines.jsp

I refer you to the following data bases for side-effects and drug (and supplement) interactions: www.drugs.com www.rxlist.com

All your symptoms are found here, where it says "seek medical attention right away if any of these severe side-effects...": http://www.drugs.com/sfx/imuran-side-effects.html

If you can't get your hands on some 6-MP prior to Xmas then I suggest that you ring or write to your doctor (e-mail, letter or Fax) and list all your side-effects with severity. He should suggest that you lower the dose to a level that reduces the side-effects, if at all possible.

Keep a patient food/mood/symptom/medication/supplement diary. This will help you better monitor your health and help you to communicate with your doctors.

Use the comparative pain scale (no pain 0, 10 excrutiating pain) http://www.tipna.org/info/documents/ComparativePainScale.htm

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

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Humira

by ARNA
(Utah)

I am having alot of the side effects and would like to know what others on Humira are dealing with??
I have had seizures and other neurological problems before I was on Humira but it is making these problems really flare up!!

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Stop the Joint pain...I have chrons
by: Anonymous

I recently stopped Humira because of severe joint pain in my hands and wrists...I've had chrons nearly 20 years I'm 42 now and a hairstylist... have been off it now over a month and joint pain has gone away.....
seizures
by: Anonymous

quite common a little scary tho .

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prednisone vs. humira

by kris malak
(st. clair shores, MI)

I have recently been diagnosed with Crohn's Disease and am having difficulty getting it into remission. It's been 12 weeks since the onset with little relief from Colazal (9 tablets-6750 mg per day) Have scheduled an appointment with my specialist to discuss the use of Prednisone. Not looking forward to the side effects of steroids and hoping there is another option. Has anyone had much luck with Humira? Please advise.

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Prednisone
by: Anonymous

I totally agree with James. I have had Crohn's for 32 years and have been able to keep the flare-ups under control by taking a round of Predisone, which usually takes about 2-3 weeks to finish. I have not taken Humira so can't comment on it. However, at the onset of fever or diarrhea that cannot be controlled, I start the Prednisone. I won't take chances anymore by waiting to see if the symptoms worsen, because too many times I have been literally carried into the emergency room, so dehydrated and weak from diarrhea and fever that I couldn't walk on my own. I haven't been hospitalized in over 15 years now; and previously, I was in the hospital at least once a year with Crohn's. The complications from the Crohn's are far worse than the side effects of Prednisone - especially if you don't continually take the Prednisone but rather take a round and then stop. Which reminds me, when taking Prednisone or any steroid, do not suddenly stop taking it. You must decrease the dosage little by little, on a daily basis, until you're taking just one tablet per day, before totally discontinuing taking the tablets. Also, if you have been on Prednisone or other steriods recently and require surgery, you must tell the doctor that you are either on steroids or have recently taken them. The doctor will need to take that into consideration when determining what course of action to take.
Prednisone
by: James

When i was first diagnosed with CD(1989). I was put on a course of Prednisone. The effects of a flair up far outweighs the possible side-effects of taking this medicine. I was up and back to living normally within weeks of taking this. It is such a relief that life can resume again. I have had several courses over the years and have never had any side effects. There is a risk of side effects with any medication, regardless of how harmless it may be. Prednisone may not be the answer in every case but it worked for me and is a common anti-inflammatory drug used for a wide variety of illnesses i.e Asthma and skin conditions.

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HUMIRA AND CHRONS DISEASE

by Zarah Alvie
(USA)

I am having a hard time getting information. I have Chron's disease and had sugery August 2nd 2011 for small intestine obstruction. 10 days post surgery I was back in surgery with a massive inflammation blockage. This is first time something like that has happened to me since I had 3 prior surgeries. The only difference is that I am taking Humira for past 5 months and was told not to take the injection before surgery. Now I cannot get straight answers from Dr's on how this inflammation formed so quickly after surgery. On doctor suspects that because I have not taken Humira injection for about a month that it might have played a role in this mystery, Has anyone had anything similar to this or have insight on success and failures from Humira and Remicade, I really appreciate any and all responses and insight.

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Humira for Crohn's Disease

by Irene Brace
(Canada)

My daughter started on Humira last week for Crohn's Disease ..She is also taking Imuran. She suffers from Seizures which was under control with Tegretol until she had a Grand Mal on Saturday June 5..2010. Can someone shed a light on this for me? Should she continue with Humira and have her Seizure Dosage increased? Or should she stop taking Humira completely? Any suggestions will be greatly appreciated.

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humira for crohn's disease

Have had three sections of bowel removed no relief Doctor tried all drugs and now has me on humira still no relief I have gained weight all around my abdominal region still sit on toilet at least 10 times a day and am only eating twice a day pain is unbearable has any one else experienced this??

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my opinion
by: Jaime

I started humira and didnt even get a chance to get my second dose when i was in the hospital with a really bad case of pneumonia which resulted in having to have a 2 inch tube surgicaly put into my ribs...the absolute most painful thing i have ever went through and i have had 3 kids! imhaving a hard time excepting the hu,mira and remicade type drugs because if the chrons doesnt make us sick then these immune suppresent drugs do!!
Humira
by: Lizzie loose bowels

You symptoms sound just the same as mine, i have recently started humira but had a very bad reaction and it got stopped, i really dnt know what will be the next step lets just hope a cure found soon.

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Please: need advice/reviews on Humira

by Shelly
(Australia)

Hi

My name is Shelly and i am 25. I was diagnosed with crohns 5 yrs ago. 5 months ago i had my worst flare up. The previous 5 years i never really had a serious flare up and was on salofalk tablets.

My doctor put me on Entorcort (which didnt really help me at all). I kept trying to ignore the pain and tried to continue with life as best as i could. Until 2 weeks ago when i ended up in hospital.

I was put on hydro-cortisone (if thats how u spell it?) and then predisilone. Neither of which helped improve my blood results. My CPR (inflammation marker went up to 165 and my MRI scan showed significant inflammation.

I am still in hospital and my doctor has put me on Humira. As i have been in hospital for over a week, i have been reading all about it on the internet and am extremely scared about the side effects of this drug. I am stressing so much that i am finding it hard to sleep and am constantly thinking that it can cause cancer.

My doctor said that it is my only option at the moment. I would have liked to get a 2nd opinion, but when you are in so much pain you just go with whatever is recommended i guess.

Anyway i was hoping to hear from anyone else that is on this drug? How are you feeling? What reactions have you had?

I had the first dose of injections 2 days ago and my blood results are better but the thought of injecting myself again with something that may cause cancer scares the living daylights out of me.

Please any information of feedback on this drug would be appreciated.

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Humira for Crohn's disease

by John
(Mesa, AZ)

My son was diagnosed with Crohn's disease last year. After a bowel resection in May, he has done quite well. He has been on Imuran (although a low dose of 50mg/day), it was stopped about 6 weeks ago to make sure it was not the cause of his anemia. His physician wants to try him on Humira. The only medication he is currently taking is an iron supplement.

Can anyone tell me about their experience with Humira?

Thanks,

John

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Why continue with Humria if Crohns is in remission

by Cecile
(long island NY)

My husband has severe Crohn's. He had his colon removed, went to the "Best" NY hospital, "Best" surgeon and had staph infection had to be hospitalized after the colon was removed, had to be on TPN,5 more surgeries later because when they removed colon, small intestine was not put back correctly. Had to have a graph on his abdomen.
He has been through hell and back. His joints are hurting him now. He has been off Humria for almost 1 year now because of all that has happened, and the gastro wants him back on. His Crohns is in remission, so why put him back on this heavy drug?

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Humaira for crhon's disease?

by Chantel
(long beach, ms)

I am 27 years old and I have crohns disease andhave been living with it for years now... I had my surgery in 2008 and I recently had a colonoscopy showing that it is back... now I have to take the humaira shots as prescribed by my doctor... how does this drug work? Is it worth taking? Any input will be greatly appreciated and taken into consideration... just need answers!

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Humira

by John Fierro
(Mesa AZ)

My son will be starting Humira shortly. He failed on Immuran (caused anemia) and our insurance company would not approve Remicade without trying Humira first.

Would anyone care to comment on their experience with Humira such as effectiveness, side effects etc. What is the longest you can be on Humira without it losing it's effectiveness?

Thanks,

John Fierro


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My experience of taking drugs for Crohn's Disease NEW
by: Kit Campbell

After going in and out of doctors surgeries with stomach problems at 3 months old, to having my first really serious bleeding attack at 12 years of age, followed by 28 years of medications, bowel removal operations, bowel re-sections and the constant threat of a colostomy bag or colon cancer, I can state today that I no longer have Crohn's and haven't since early June 2000.

I am now working with an IBD and mucosal specialist at the University of Tasmania, in order to provide an alternative way of looking at this and other gastrointestinal diseases.

For the past 13 years, I have been self-studying neuro biology, neuro plasticity and cell biology, in order to explain to others what the changes were that occurred with me.

During this time, I have written many emails to other sufferers, sharing my thoughts and understandings about this debilitating disease and have had some great results.

Last year, I decided that I wanted to share more to more people and wrote a book, which I finally finished two months ago and have only presently got it up on Amazon as an ebook. With this, I hope to enlighten more people who suffer, from anything, how much the mind has an effect on the body.

Before you dismiss me and what I want to share, check out my youtube channel, which is where I share most of what's in my book anyway.

This is not about selling. This is about a 54 year old, who suffered for 40 years, her whole childhood and beyond, from Crohn's and then in 2000, in the middle of an acute bleeding attack, literally dropped it and in only 7 days, avoiding the booked surgery and who wants to help others.

I no longer own that name anymore. A Crohn's disease sufferer.

I am still answering emails to anyone who writes to me personally at info@kitcampbell.com

I wish you all the best in your individual journey.

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