Has anyone been on Humira and what kind of result did you have? Any side effects? I am on lots of meds which are not decreasing the pain. My doctor wants to put me on Humira and I was wondering if anyone out there has had any success with this drug. I am desperate to NOT be in pain anymore. Help...Kim
I was diagnosed with Crohn's disease in December 2004. I was ok my first two years then spent a lot of time in the hospital. I tried Remicade and had an allergic reaction. They tried me on it again and I wasn't responding. Then, a new 'miracle' drug came out for Crohn's called Humira. My doctor put me on it and though I had no bad reactions to the medicine my body did not respond to it either. I had surgery in April 2008 and they removed 15 inches of my intestines. I have been feeling great ever since. I am NOT saying surgery is the only way to feel better. I put off surgery for as long as I possibly could and really believe it should be a last resort. I have heard of people who have responded well to Humira and hopefully you will be one of those cases. My only dislike was that I had a hard time stabbing myself with a needle. I kinda got used to it though. Good luck to you!
I was diagnosed with Crohn's disease december 2007 and hadnt responded well to anything, however, monday of this week I was started on humira and my stomach hasnt felt this good in a long time. I am having little to no diarrhea. However humira is causing me to have a headache, feel nauseated, and some other things. But its not easy giving yourself shots especially if you dont like needles, but to me it is worth it and I might actually be able to enjoy the holidays this year which is the best gift anyone could have given me this CHRISTmas. I am still in a little pain but not much. So its already worth it and its only been a few days.
WOW! Its been about 3 weeks and all that I have changed is swopping to humira and I have very little pain...it is sooo worth every shot I have to give myself...my doctor also put me on prednisone though...so that is also a change and does stop flares...but its so worth it....It depends on your doctor's opinion because I even had more tests done to make sure mine was crohns before I even was started on humira and then went through about 8 more months of torture because I didnt listen to my doctor's advice the first time...but after that 8 months I basically went in and asked him to do something cause I couldnt take it anymore and it has been worth every minute of it...Also get the doctors to watch your iron because I now have iron deficiency because of bleeding and other things with crohns
I never heard of Humira....... I am on Purinethol a medication to prevent fistulas.....and I take a packet of Cholestramine in the morning in juice or lactose free milk........with my breakfast and it really helps me a lot.......(Cholestramine binds me so I have better bowel movements).....with the diet I am on it works most of the time.....I also had a bowel resection and I have very little pain any more........hope you feel well and please take care
Hi, I've been on Humira for 9months with great results. I'd been having a lot of problems with crohn's arthritis too but other than my back pain the rest of my joints are essentially pain-free. It's a very painful shot but I got my doc to order Lidocaine cream by prescription and put it on 1 hr before the injection and that has taken care of the problem. Hope it works well for you. Also it took about 3 injections to see any remarkable improvements.
I have not been on Humira but was on Remicade with great results. My chrons had progressed so far by the time I started the Remicade that I had developed fistulas and had to have surgery. I decided not to continue with the Remicade after the surgery because I was doing so well. If need be I will try the Remicade again becuase I know that if I develop a reaction from the Remicade (since I was on it previously) I will then try Humira. However, i cannot say enough good things about the Remicade. I truly believe that if I had not started on the Remicade I would have been in the hopsital the next week.
Thanks all, for your responses. I am still waiting for an answer from the pharmaceutical company on the Humira, as I also have NO insurance. I am on Endocort (steroid with a LOT less side effects than prednisone), Pentassa, Depression meds, Trammadol (pain), percocet (pain), azathioprine 75mg. Still, I am in pain almost daily. Every once in a while I have a good day. I am really having a hard time, mentally and physically. I have always been very active, early to rise and then go go go go... Now, I hate waking up because usually my pain is the most severe in the morning, which keeps me from being able to function. Financially, well...you get it...meds are so expensive. My Doc has been great with any available samples, even so, the expense is outragous! The pain is either severe or just enough to keep me down on the couch.It seems if I am laying down it becomes less severe, but who can lay around all day? I am getting increasingly depressed and have really had enough. I am miserable and I have a family to take care of which sometimes I just CAN'T do, which also increases the depression. I won't eat at times just to slow down the bathroom trips and lessen pain and bloating. I feel achy in my bones, exhausted and have had a temp all this week. Ok, I have vented...lol...I am really just becoming a big mess and don't know how to deal with it right now. Thanks guys and gals...for being here! Kim
Kind of sounds like you may have IBS as well...yes if you ever have a fever now that you have been diagnosed with crohns disease cause it could mean you either have an infection or the crohns is currently flared up either one they can give you an antibiotic for...Currently I have tried medicines in every category for crohns and nothing has worked even took two or three in some of the categories...they are still trying to find something that works for me and I am trying to learn to cope and still live a completely normal life. My doctor is stumped and doesnt know what else to try...So I understand...GOD bless
Hello all. Ok,so, Humira arrived on last Tuesday, May 5. The starter pack was 4 injections for the first dose, in which my boyfriend injected for me. He injected 2 in each thigh. The med hurt going in, like a burn, but it was quick enough. I have been in such pain for so long that the needles were a breeze...lol. The second dose will be 2 needles in 2 weeks and then 1 shot every other week.
Last Saturday, I actually felt like a normal human being!!! Sunday I had some pain but not the unbearable pain I have been in. Yesterday (Monday), I went for a bike ride with my family, which is just amazing. The morning was rough, but once the percocet kicked in, I felt much better. Normally it just cuts the edge off, but it actually worked as a pain reliever!! I did feel some very sharp pain riding (not just in my belly lol!!) but not enough to turn back. On Saturday, I stopped taking all my meds except for the percs. I am not recommending anyone stop their meds, for me, I have been on so many and with not one bit of relief to speak of, I have been basically living on the couch. My joints were really starting to hurt, climbing the stairs was becoming a project. You start to not know how much of the pain and discomfort is the Crohns or the meds (steroids etc..). So, I am feeling great. I am not sure if it is the Humira or not. My Doctor said I wouldn't know for 2-3 months, but I have read other posts where people have felt a difference close to immediate. Saying my prayers everyday AND keeping my fingers crossed..lol. I will keep posting with any news. Thanks to you all!!
That is wonderful. You probably are feeling better from the meds. I took remicade and felt better within a week. Started in Feb. By March I was a completely different person. I was also having to take pain meds. But by March was completely off them. I now take Pentsa and 50 m of azithioprine.
Hi, My daughter-in-law, age 28, has had Crohn's for about 14 years, and tried all of the meds like Remicade, etc. None of those meds seemed to be working any longer, so her Dr.put her on Humira injections twice monthly about 15 mos. ago. We all did a lot of research, as she hated to go on it, but what do you do? Anyway, it got her #'s down significantly in her blood work, though they've still run a little high, but all in all, the Humira has worked the best, and she seems to experience very little side effects from it. She has great insurance, so that helps, and I don't envy you not having insurance, and having to try to figue out what help is available to you to defray the cost. Have you found any help for that? I sure hope so. Is the Humira still working for you? I pray that it is. My oldest son, age 36, has had juvenile diabetes for 30 years, and that is an awful disease, and so expensive, too, without insurance. But when I met my sweet daughter-in-law, I now know just what people who suffer with Crohn's deal with, too, and it's not any fun. Oh, she also found out she is pregnant, and due in February. She's worried about having to stay on Humira injections during the pregnancy, but her Dr. said she has to. We'll be saying lots of prayers. When she had her blood work done on Monday, the Dr. called the next day and said her Crohn's numbers are down in the normal range, isn't that amazing? She can't remember the last time it was!
Anyway, good luck with the Humira, and I pray that you've also found help in paying for it. Amazing the ridiculous prices these drug companies charge for the meds people need to badly. Take care!
I have been on Humira for two years now. I have no noticeable side effects except for slight swelling/redness at the injection site on my stomach. It has worked wonderfully for me as I am actually able to eat food thanks to Humira! My symptoms are not completely gone and I still do have diarrhea quite frequently but for the most part my stomach PAIN is gone - which is great news to me. I have a hard time injecting myself with the shot but my boyfriend does it for me, which works great for me.
i have been taking humira for 4 months it makes me feel REALLY bad for about 3 to 5 days. i will have headaches, chills, weakness in my intire body. i hurt all over. my joints are toture rifht now. but there was one time a doc had me take dilaudid during a injection week. WOW i felt good. and i had hoped this time would be good to. but WRONG i have struggled so bad from the shot. just like all the times b4. so what made that one time better was dilaudid. i take other meds for my crohns to. i see my doc monday and i hope we can sway them to our side for the GREAT med that helped so much. everyone pray they give it to me PLEASE. my husband is a god send i couldnt make it without him either. but has any had an experience like mine with the side effects of extreme weakness and the above description.
Hi - I am not, yet, on Humira, but have weekly self injections of methotrexate (a chemo drug that was initially used for breast cancer) which is an immuno-suppressant, and these past 5 months, 8 weekly infusions in hospital of Remicade.
Since starting methotrexate some 9 yrs ago I have had to have bi-weekly blood tests. Typically, they cover:
Full Blood count, i.e.
total white cell count
red blood cell count
mean corpuscular volume (MCV)
Mean corpuscular haemoglobin (MCH)
Typically, without fail, my MCH and MCV are always out of range - too high, but my gastro says this is to be expected, as immuno-suppressants affect the bone marrow. My last test showed out of range red blood cell count (too low) and haematocrit (too low) - not sure what the latter means.
In addition I also have a liver function test:
serum alkaline phosphate
serum total bilirubin level
AST serum level.
The LFT panel is absolutely necessary as these drugs, can and do, affect the liver.
I also have occasional C-reactive protein level marker and B12 tests. If they are out of range my gastro prescribes antibiotics for the CRP or hospitalises me. The norm should be less than 5, but mine recently went up to 270, so a week in hospital on various IV drips. The B12 test, if low, necessitates a B12 test, given by the GP's nurse
I am not doing too well at the moment, severe weight loss and horrendous diarrhea, so when I go for my next infusion on Monday 20th Jan, I am going to ask if I can try another anti-tnfA drug - humira, cimzia etc. as after 4 infusions, I don't think the Remicade is working.
I have had Crohn's for 40 years and tried almost every drug going, except the newer monoclonal antibodies. The risks of TB and lymphoma have been explained to me at length, particularly as I had breast cancer, whcih when diagnosed, had already spread to my axillary lymph node.
I have learned to live with this "crap shoot" and just pray one day I will find a drug that keeps me in remission - even for a year! Just had my first resection in 2009 and far from it being the "miracle" my surgeon promised me, my symptoms are even worse
I’ve been on Cimzia since April '09 and it just quit working for me, if it ever did. One thing about Cimzia, make sure you’re on an antidepressant before starting and stay on them for at least a month. After the second injection, I put another lock on my gun cabinet and gave the key to my wife before my next injection. I never really did shake the depression completely during the first two post injection weeks.
My CD is a little different, I tend towards constipation and blockages mostly, due to strictures. One year ago I had my first surgery which ended up being a stricturoplasty x3 to repair 6 strictures. I’ve had CD since a teen, diagnosed 16 years ago when when I was 43. I had 6 weeks of Prednizone and Azachol, then went into remission for around 13 years. My GI wants me to try Remicade now because we went right from the Imuron and Pentasa to the surgery then to Cimzia.
Humira is my choice if I can talk my GI into it, I can’t see backing up all the way to Remicade when Humira may do the trick. I had Iron infusions 2 years ago and ended up with clots in my arm so I'm not looking forward to Remicade infusions.
well, this is my 8th month of doing the humria. i have started to see some improvement. my hair looks better and i have gained 5lbs. the best part the last two times i did the shot it didnt make me feel soooo bad. But i have been eating protein bars, drinking ensure,powerade and started liquid carafate. i had to get the chest pain under control and the carafate has did the trick. Also, my blood pressure started staying 160/ 120 i had to go on bp med and now it is back to normal. maybe this will help someone else. maybe this year my husband and i can go to the beach and go snorkling....we will see..
how are you? did you get the humria? never give up. i thought i'd never get the right help. but God helped me find the right doc. now things are looking up. ive had cd is 1997. but for years i knew i wasn't like others.
I haven't tried Humira yet as I am doing well on 8 weekly infusions of Remicade. We had to stop the weekly methotrexate injections a month ago as I had a violent allergic reaction - weird after being on it for some 9 yrs. Finally started to put some much needed weight on, am 105 lbs, which is brilliant. I am eating well, just get the occasional bout of diarrhea after eating breakfast. Gastro says I will be on Remicade for life - but no problem financially as all our health care, including drugs, are free at point of need - we paid through our National Health & Insurance tax when working. Pity the US doesn't have a similar system.
Last week was awful. Chest pain vomiting at the er they said a virus. I contactd my gastro office to inform them. Well, the had the nerve to call and say the reviewed the report and it was caused from me not taking my meds. That was a d@#$% lie. I had thrown up the meds. How stupid. Of course this isn't the first time they het their info wrong. They have screwd up my scripts on countless times. To top it off messed up my humira refills and shipping. I have to always check on everything their suppose to do.
I am doing better. Today 9 days later. I just get so upset when someone doesnt do their job. Just needed to get this off my chest. My birthday is n a few days I hope to eat something solid. Oh forgot to say its just been liquid for days. Better than a feeding tube. Do any of you have this problem?
My mom has had Crohn's for almost 30 years, and she has been in remission for 10 years. She has had multiple surgeries when I was younger, and was already on Remicade during the worst of it about 11 years ago. A few weeks ago, she had a flare-up for the first time in a decade. Her doctor recommends putting her on Humira, but she is concerned about the side effects. We have several babies/toddlers in the family, and you know how kids get runny noses and little colds often. She's worried because her doctor said Humira can cause you to catch infections often. Has anyone else who has been on Humira experienced this? She's also concerned about the more serious illnesses that can come from taking Humira. Please let me know!
yes it lowers your immune system really low at first. and everytime i took my shot i had a sinus headache and felt like i had the flu for about 5 days. but i'm in the 9th month and the last 3 shots actually have helped me feel better. sometimes the risk is worth it. i was so sick and at 98lbs. i felt like i was dying and i didn't have other choices. most other meds have failed. but i didn't give up. i've only been in remission once since 1997. but i'm thinking positive. i keep my hands washed an use the hand sanitizer. wet wipes for the potty. also, keep all door knobs cabinets and counter tops wiped down with anti-bacterial wipes or bleach-water. stay away from children who have had their shots. i go to the store when its not busy with alot of people. and get the first app. times when i have to go to the doc or whatever. and i go to the park with my husband to get out of the house in the fresh open air. hope some of these tips help.
Hi - just a quick update - great news for a change after last year's "annus horribilis" - well my name is Elizabeth, so I can use our Queen's word terminology after the horrendous fire at Windsor Castle. I had a consultation last week with a gastro - not my normal one as he was Consultant on duty on the in-patient wards (the one with a spinning halo around his head) and learned something new, which does alarm me a bit. I have only seen this gastro once, when hospitalised last year with a pulmonary embolism, which my docs think came from my previous breast cancer, which had spread to the axillary lymph nodes in my right armpit.
I was under the impression, when first given Infliximab (Remicade) last July, that I would have 8 weekly infusions for life; been on them since July 2009. However, this gastro said the protocol now is to give Infliximab for one year, then they will stop the infusions and see if the Crohn's flares again. Yikes - I cannot contemplate going through last year's 4 hospitalisations, surgery, small and large bowel resections, severe flare, then pancreatic insufficiency, not to mention 2 and a half months on enteral tube feeding at home - 10 hrs a night wired to a machine in my bedroom. Crohn's *****!
I am doing sooo well - am now a healthy 112 lbs and have a lot more energy, just some days diarrhea after eating breakfast. I have tried eliminating all items I thought could be the culprit (wheat, tomatoes, fibrous veggies etc) and eat a high protein, high carb diet, with as little fibre as I can tolerate - virtually no fat, just enough to keep me healthy
Not sure what to think - whether there is new research on using Infliximab, or whether it is a cost factor - I live in England, and we get "free" medical treatment at the point of delivery. We do pay though, when we work, some 13% of salary for National Health Contributions, and our employer pays 14%, so it is not really free....only for those that shirk work and immigrants from the newly enlarged European Community, including Eastern Europe who have not paid one cent into the NHS system. The goal posts have changed dramatically.
I am due for more "imaging" he said, as we suspect my pain on rising, and diarrhea after breakfast is due to more strictures. He said I have had enough ionizing radiation for 2 lifetimes, having had Crohn's for 40 yrs, so I am hoping they can do the imaging by MRI
All in all though, I feel terrific, got some much needed energy, although I try to do too much, and am learning to pace myself.
Great to hear from you I was wondering how you were. It sounds as if you and I are on the mend for a change. I hope to stay there. My problem is when I travel with my husband and need meds. The nurse always it seems to mess them up and I get blamed. She even said that she would not call anymore meds in till I see my doc. Now keep in mind me traveling is not new to them. I'm gone 2-3 months at a time. If they would not keep messing with my meds I think that would help me get stable for awhile. If you have any idea's on how I should discuss this please feel free. I just don't feel the treatment is right because when I'm back and go in for an app. they eat us up. I always bring them a cake or cookies. Its not like I'm the annouying patient that calls all the time. This last time which was just the other day the nurse hung up the phone on me. I didn't even have the chance to ask about my results from lab tests. I am just tired and upset over the constant problems with them. I feel as if I am at their mercy. They even have missed refilling my humrira. If I didnt check and stay on top of all they are suppose to do I dont know how things would end up. Liz or anyone else have a suggestion or have had the same experience please share. My app. is May the 14th. So, let me hear from you crohnies.
PS-On good days i do all I can. But am learning to pace myself also. i just want my life back.....well, at least a normal crohn's life. ha ha ha......
Ihave a question which I have been forgetting. Does anyone else have a problem withbladder and kidney infections over and over again? I have had 4 already since Dec. 23,2009.
Also, the humira is helping the crohn's but nothing for the RA or even just joint pain of any kind RA or not. Anyone else like that out there having or have had these issue's.
i was wondering what are some of the meds you other crohnies are taking? i am taking bentyl but i do not like the side effects? lomotil really doesn't help. i have read about donnattal & belladonna and had it in the er once. it worked with no side effects like bentyl. you guys know that weird stupid feeling you get on anti-spas. i am trying to get all the info i can before this next gi app this time. i know there has to be other meds to try. if my doc will listen. please i need suggestions and info. my meds are librax, lomotil, tincture of opium, loratab, ultram or tylenol 3(they change the pain meds back an forth alot), bentyl, zofran, humria, carafate liquid, kapadex, pentasa, benicar, b-12 injection, nu-iron. i think thats all.
even with those i still have at least 10-15 bowel movements a day. if i do not take something they can be as many as 20 or more. no joke.
i hope this next visit goes well. i feel if they would just lesve my meds alone for awhile that maybe i could get stable or even remission.
i am making notes to take with me to this visit. thanks to all for listening to me in the last few post. its good to have a place to vent it out.
i have been soooo aggravated when i have written the last few post. ibd and crohn's *****. you all know that. but i am trying to remain positive. that which doesn't kill us only makes you stronger, right?
You need to see a urologist and ask them to find out if you might have a fistula to the bladder. I had a bladder infection that would not clear up and that was the cause.
Let me know what you find out.
Thank you so much for the info. How did you feel other than the bladder infections? Did you have a test ? What did they do to remove the fistula?
I had a fistula near the rectum and had to have it removed. It was 2in long and 2in deep. It had to heal from the inside out. So nasty and incon. Thank you again. Please more info if you can.
I am a 50 year old male and was diagnosed with Crohn's when I was 13. I have had four surgeries related to Crohn's, colon cancer was discovered on my second to last surgery in '97. Cancer was found in time, before it spread. Timing is everything, and regular checkups. My struggle with Crohn's continues.
I have tried all meds except the biologics. I have been researching, via internet, LDN (low dose Naltrexone). Dr. Jill Smith at Penn State (Hershey) has conducted clinical trials using LDN and has claimed positive results. Has anybody tried or heard of its effectiveness?
I was feeling so much better than I had in months. I had started Remicade and it was doing wonders for me. I could actually eat food and was getting entergy back. Just cloudy urine.
Yes, had to have it removed. But this happened to be a blessing in disguise, because I was feeling great, getting strength back etc.
They did a bowel resection and I had 2 fistula (only knew about 1). Just as Davedog, they found a cancer in the crohns infected part of my colon, It was just a mass of colon all wadded up, the bariatric surgeon said he didn't know how I was standing it. In the middle of all the infected colon they found a cancer. It was an incidental find and was so new and not spread that I didn't have to have further treatment. I went to the oncologist every 3 months for a couple of years, now every 6 months and later 1 time a year for life.
I know that if I hadn't had the fistula and had to have it removed, I would be in really bad shape by now as the cancer would have been rampant.
So far my crohns is still in remission. Best of luck to all.
Liz and Davedog,
Hope you are doing better each day. Attitude helps us make it through each day, keep a positive attitude and get better.
Things went good and bad. So, here is the good. I have gained 7 lbs. Now I am at 123lbs. In Dec. it was 98lbs. Big improvement. My blood work was good. However, my amaleyse is staying up. Along with excessive wheat in my stool. To deal with the wheat I'm now taking Diflucan for ten days. The pancreas issue with the amalayse to high is the result of pancreatitus. But they didn't really say how we or they were going to treat it. But at least they know now why I stay nausea with severe vomiting and stomach and right side (r. flank) pain. So, if any of you fellow crohnies have this pancrease problem please let me know how you are dealing with it and your treatment. The only thing I know from the other attacks is for me to stay away from fatty foods. Which i do anyway. I eat no more than 35 grams of fat a day. I know that when I was taking Imuran I was in the hospital 3-5 days. about 10 or 12 years ago my old gastro thought I had the pancreas attacks twice. Which It never happened before and at the time it just happened when I took the Imuran.
I have been on the humira since Aug. every two weeks. I'm still having alot of very watery bowel movements, vomiting, fever, chills, joint pain, stomach cramps, intestinal, spasm's. So, they decreased the bentyl to twice aday instead of 3-4 times. Two loratabs to 1 at bedtime. Zofran 1 every 12 hours instead of 1 every 6 hours. That wasn't a very good idea I thought. But wants me to take 4 drops of opium tincture and 6 lomital a day. So, now the humira every week. I guess we will see how it goes. They gave me two humirra samples. I'm worried that it is just some that was returned when another patient couldn't take it. Because it does not say sample on the package. I didn't think it came in a sample. i'm going to ask someone from where it is shipped from every week. I have enough problems without using a bad injection.
Sorry this was a long one but that brings you all up to speed. Please let me know if any of you have or had any of the above problems.
I am 18 and Found out I had chrons an colitis. a year ago, I went through alot of pain and doctor visits and a lot of meds, I got the things called inflimation tumors, I spent most of my time in the bathtub or in bed... It hurt to move, finally after so many new medications not helping my doctor put me on Humira. It has helped so much, after my first four shots I could start to feel it working in first hour!. my inflimation tumors went down in size the very next day, they are gone now.. Only thing humira does to me is when I take the shot, Im usaully pretty tired for a few days, but id rather be tired then in pain!!. if anybody would like you can email me for details, Breanna_dalton***@****.
Hey, I have Crohn's and my doc put me on Humira, I loved it, it was a great drug (make sure you numb the injection site, though), and got me off the Prednisone for the first time since my diagnosis. However, you can catch any and all infections out there. For example, my coworker came into work with a bad cold, so I got the flu, and ended up in the hospital for a month from a flare up orginating from the flu...go figure. So, I loved Humira, but be careful of sick people, since the drug's an auto immune suppressant.
How are you doing? I hope to go on vacation. I need a week with no doc apps. Its our anniversary so its more than just a vacation.
I started off great 2 months ago. I was going to the YMCA with my husband working out and riding my bike at the park. I was going almost everyday. Then the gastro wanted me to start taking the humria every week. That was a bad idea. I suffered 10 months before my body got use to it. It has made me sick. I can't and will not do it every week. I had even put on 1 1/2 inches of muscle. By the forth week of the shot - I was ill. So, i have stayed in our apartment. I joke that I'm like the Hunch back stuck up here for 3 weeks. My amalayse level has been high causing pancreatic attacks.
I am thinking positive. I have something to look forward to.
For all that have taken or is taking Humira and have a problem with the pain of the medicine, I have a trick that I do when I take my Humira. I put an icepack on my abdomen for a few minutes. I wait until the stinging is gone from putting something so cold on my abdomen. Then, I know that the abdomen is numb and I then take my shot. This keeps the medicine from stinging so bad. I hope this helps someone with this small complication.
I don't have any fistula's in my bladder or track. It was interstitial cystitis. Doc took biopsies to rule out bladder cancer. Get the results on Aug 17th. We are thinking positive and praying. The biopsies hopefully with the bladder being filled to the max ( I was out for this one) it stretched it and will stop me from urinating 20 or more times a day. Blimey mates its hard to stay hydrated for the crohns and now this. Hope this helps someone from suffering as long as I have.
PLEASE let me know how some of you felt when you stopped taking the humira. I'm really wanting to stop it. I have been sicker. Been on it one year. I don't think I should give it any longer to get better.
I HAVE BEEN DIAGNOSED WITH COLITIS AND I HAVE BEEN PUT ON LIALDA AND STEROIDS AND HYDROCORTIZONE AND NONE OF THEM SEEM TO BE WORKING I HAVE BEEN HAVE REALLY SEVERE FLARE UPS NOTHING BUT BLOOD MOST OF THE TIMES I GO TO MY DOCTER FRIDAY AND IM A GOING TO ASK THEM ABOUT PUTTING ME ON REMICADE I CANT GO NO WHERES CAUSE I HAVE TO BE NEAR THE BATHROOM MY LIFE HAS BEEN MISERABLE IF ANYONE HAS ANY INFORMATION THAT I CAN HELP ME MAKE ME A LITTLE BETTER PLEASE LET ME KNOW THANK YOU FOR YOUR TIME
Well, i had to be off the steroids before they did my remicade. However, that was 10 years ago. Boiling cabbage and drinking the juice halps soothe those spots that cause you to pass blood. Also, aleo vera liquid you can get at gnc or some walmarts will help sooth it. Ibupropen or motrin will cause blood to pass more. They help our joints and arth pains but its very hard on crohnies. Hope this helps.
Hi I have UC.I have been on Remicade for years. I do not mind the 2-3 three hour infusions. I am in remission at this time and I feel great. I am not on any other medications at this time. My doc has recommended that I switch to Humira?
I did remicade i wish i had it instead sometimes rather than humira. it makes me soooooo sick for three or four days. but hey some dont have this happen. but i think most do. it fels like the flu. i have been on humira a year and it still makes me feel very bad and weter each injection. good luck.
Hey all you fellow crohnies. I had my gastro app. An for those of you who have read my other posts you will understand what happened. I was suppose to be taking the humira every week. But it made me so sick - that I went back to every two weeks. I feel better. However, my dumb gastro n.p. thinks that I should go to cizmia (not sure on the spelling). She didn't even want to refill my bentyle and said that my ins shouldnt be paying for my zofran. She had a problem. She wouldn't listen to myself or my husband. An wants me to go to pain management. Because I have pancreatic attacks and interstitial cystitis. Now, I don't see the point in going to it. What can they teach me. Anyway I'm not going. She made me so mad the last few months everytime I seen her she changed my meds. You all know once you find a good combnation of meds stick with it. But NO she kept changeing them. Long story short - I am looking for a new gastro. There was alot more said but you all get the picture.
Thanks for listening.
I have had ulcerative colitis dx since 2005, and dr changed it to crohn's Jan of 2010. I have been on everything- from steriods to Remicade. I am now on Humira since Feb of 2010. I have a continuous stuffed nose, altho I have no problems injecting the drug. I am however, starting to get worried when researching side effects. One forum has horrible side effects starting after about 1 yr of treatment, from cancer to pneumonia and death. Now I am wondering if I should stay on it. I am also on Liadal, and iron pills. My bm's have improved, however there are still days where I cant leave my house, or come home to "change" my outfit. I feel like going off all the drugs and following a strict diet- but my drs tell me there are no certain foods to stay away from.
I have been on Humira for about 8 months though I did get lazy and I stopped the injections for a while. I am sure they are causing me to have yeast infections. The Humira is a great drug for me. The problem is I feel fine most of the time, so then I feel like I don't need any medication. But then I get REALLY sick. Then everyone is cranky with me. The doctor says "You should never miss appointments and never stop taking meds without asking first" in a very condescending way. Then my husband says " Why can't you just take it, you are acting like a big baby" Then my kids say "My mommy is sick and she needs to just stay on the couch. She can't play with me" So I know I need to take meds and stay healthy. But some part of me hates this whole mess. My whole point is I was off for a while and now I am having a big flare. My doctor wants me to take a bunch of expensive tests and I feel like I want to wait and see if the Humira kicks in again. Does anybody know if the Humira stays in your system and gets stronger with each dose or does it ware off. Should I treat this flare or wait and see? I hate this!
I am 37 years old and had mu first UC break out during a business trip to India back in June. The doctors and hospital there were absolutely phenomenal and the diagnosis was head on, which I can’t say about the doctors I visited previously here in the US due to some stomach issues I had. Either way, I had a severe outbreak of enteropathic arthritis about 3 weeks ago and it immobilized for about 2 weeks with horrible joint pain. My UC is pretty normal and I just deal with some soft stool and only 1 or 2 movements a day and I am taking Lialda to control my UC. My rheumatologist give me a shot of steroids, which helped me get back on my feet and back to work, but said that only the steroids keep my arthritis under control at this point and he is suggesting to put me on Humira as a long term solution. Initially I agreed for him to get approval from my insurance to get the approval, but after reading a few horror stories about the side effects of Humira I told him to hold off. At this point I am taking 30mg of Prednisone per day, but know that this is not a long term solution.
Does anybody else have an experience with low UC and enteropathic arthritis and the impact that Humira had? I am just scared to open a Pandora’s Box, especially now that I feel good again.
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I was diagnosed with Crohns nearly 6 years ago and by the time that had happened I was so sick I couldnt go to the loo for days and would vomit. I had a resection about 4 months later and was Crohns free for a year.
Unfortunatly I used to have a bad habit of going 100 miles an hour with everything and worked 2 jobs to pay for my music passion. I also was subjected to a nasty boss for a few months and started getting sick again over 18 months ago. This time the Crohns was in the original area and down in my bum. VERY painful. I have not recovered in all this time and just before Christmas I had a sigmoidoscopy to find that it had spread to a 3rd area in just 5 months.
I have now cut all wheat/gluten from my diet and very limited dairy. I have to take calcium supplments as I'm on high doses of steroids and I'm on Imuran. Some days the pain to even sit down is 7/10 other days its still there but 3/10. I don't sleep much and with auto immune disease sleep is very important in healing.
I'm about to start on Humira this week and cannot wait. I don't care about the risks, I'm in too much pain and I still have to go to work and function like this.
What I do believe in is diseases are our bodies at dis-ease. Something we are doing is not agreeing with us. Crohns is a stress triggered disease and I have removed all negative people and things out of my life. I have ZERO tolerance as negativity affects me far deeper than people that don't have Crohns or some other debilitating disease.
Keep positive and look at your lifestyle and diet. Look at your thought patterns and your attitude too. If you think **** you will be ****. It is harder said than done if you are living in constant pain as I am. But I will not be beaten by this disease and I refuse to be a victim. I am hoping Humira will help put it in remission so I can then look at other alternative therapies and wean off the drugs. I'm 38 this year and although at the moment the possibility of having a child is very slim I refuse to give up hope.
Hang in there Kim. Things will get better! I'm on Humira and am doing really well! I am severe as well.
For all of you there is a web site www.*********** and there are a lot of people going through to same thing and offer lots of information that has been very helpful to me!
Humira almost killed me, because I get sinus/MRSA staph infections ofter, and my GI doc at the time didn't bother to tell me that Humira makes it impossible to fight any infection off! I was in the hospital for 3 months with kindey infection, pancreatitis, MRSA staph (which made my face swell so much it broke my nose).........and I refuse to EVER take any type of Immune-Suppressor! Please talk to your doc about this and go over all of your options!
Hi Kimberley, don't know how to make u feel better but totally get the space u are in. I hav had crohns disease since I was 18 and feel like it has robbed me of so much. I hav been on remicade and then had a Severe reaction to it (it did help me the first time tho). I've been on asacol, Pentasa, Purinethol, azapress. Prednisone, Entocord. None really helping at moment. I have a 9month old baby who really needs me and I'm still breastfeeding. I can hardly eat and am so thin. I don't know what to do. My doc wants to put me on methotrexate but the side effects are shocking, then humira is next option. I will have to stop breastfeeding (which I'm so sad about!) as these meds are extremely bad for baby. I'm worried about lupus and lymphoma from these meds and bilogics. I just can't understand this illness and can't help feeling so mad at my body for letting me down. I am also so physically active and struggling to keep up with life and look after my family. I feel like no-one understands even my hubby and I'm also just so tired of having this disease!!
I have had Crohn's for 10 years. I have tried almost every medication available. I switched Drs. and had surgery and now I am taking Humira and 6MP. I can honestly say that I haven't felt this good in a long time. A lot is said about mixing the two drugs and the possibilty of certain cancers but in reality they have found links between chronic inflammation and cancer as well. I guess what I am saying is that there is a chance of cancer either way you go. I am pain free and my life is so great now. I have three kids, 10, 13, 16. I wish I would have done all this a LONG time ago. Good Luck!
Had my first 40mg jab a few days ago for RA and am experiencing awful nausea and stomach pains which I gather is par for the course. Am however concerned that this will be ongoing and would welcome hearing of other's experience.
Have read that some people have found the automatic self injection thingie painful, although the manufacturer pack said the medication should be administered within 15 minutes of removal from the fridge, the Humira nurse said to take it out 20 mins before use, and I was pleasantly surprised at how painless using it was.
I am currently being tested for drug induced lupus from humira (I've been injecting for approx a year now). I am having severe joint problems, literally struggling to walk. I'd be grateful for any advice / info how you coped as this is getting me down.
I started Humira two weeks ago, so can't say much about it. I took the first dose, all four injections, at different parts of my stomach. For me, it hurt a lot (stung like a bee and took a while to stop stinging), and the next day I felt like I'd been punched in the stomach. I'm thankful to the writer above who told about removing it from the fridge 20 min's before using it. I hope that will help. And I hope the Humira will help.
I was diagnosed with Crohns Colitis in July 2008 and I have had more flare ups than being well. In the last year and a half I have had the worst possible time because I had an 8 month flare up which didnt respond to 3 courses of steroids, in July 2011 I had a sigmoid colectomy and was given an ileostomy. I had my ileostomy reversed in February 2012 and have suffered with a severe flare up ever since. I am now currently on Humira however I do not hold out much confidence because I had previously tried it last year and it didnt work. I have tried Infliximab before which I thought was fantastic until I had a major reaction and stopped breathing. I just want this condition to get better. I have suffered badly now for a year and a half and just hope that this Humira works otherwise I will have to have further surgery. Good luck to you all with your treatment :)
I am 66 years old and was diagnosed with Crohn's disease a year ago. My gastroenterologist wanted me to go on steroids. I refused since I can't afford to gain weight, however, I agreed to take 4000 mg. pentassa a day. I've been on it for a year and after xrays and mri the inflammation is still there. Now he wants me to go on humira and since I'm not symptomatic I don't see the point of doing anything. I have diarreah only when I eat spicy foods or drink carbonated or caffeinated drinks. It sounds like the drug side effects are worse than what I'm experiencing. I'm really confused since I've read nothing positive about these drugs online or in patient information. Is there anything positive out there to convince me to start taking drugs?
Hilda, you might want to start a new post. That would probably help you get more responses. Crohns can flare at any time. You DO NOT want to wait until you have a flare up before starting treatment. Prevention is much better. And flares can cause so much damage.
I used to receive Humira infusions for rheumatoid arthritis. I would have to go to the doctor's office and lay in a recliner for four hours with an IV. The last two infusions I had, I was unable to get myself out of bed for two days from the lumbar pain. It was awful. Not worth the side effects.
I have RA in my hands and it started about 8 years ago. The pain and redness would come and go until finally it came and stayed. My sister urged me to see a doctor because "they have drugs that can help with that". Because of the possible side effects I decided not to go that route.
By late 2011, I had two finger joints that were pretty much immobilized and very painful all of the time as well as other hand joints that were less painful. At that time, I started taking Anatabloc, an OTC anti-imflammatory product that modulated the effects of NF-kB, for hypothyroidism. Within a few weeks, the pain in my hands decreased dramatically until today I no longer have pain in my hands at all.
Although I'm not anti-doctor, I always look for "natural" answers to my aches and pains. I've tried touted anti-inflammatory remedies such as a combination of curcumin and ginger but none of them did a thing for me. There are no side-effects from anatabine citrate, the active ingrediant in Anatabloc, so for me, it was worth a try and it paid off for me.
I took humira for the psoriasis that abs ruined my social life !! Hot rid of itam now100% clear but I had had HIV when I took it which caused ALOT if complications !! Now I can't walk solo and had to quit my job at NASA!! WTF???
Hi I know this post is old but I have to tell u that I took humira for one year. I was told by my doctor that side effects are rare bc I was concerned bc many people have had dangerous reactions from it. I took it and it helped almost immediately and was able to walk without a cane. The fatigue from arthritis was gone. Fast forward six months and I became ill....very ill. I contracted klebsiella bacterium and resulted in severe pneumonia. Also at the same time I gained 50lbs but still ate a healthy diet. I developed an enlarged liver. Once all this was treated I started back on humira. Within six months I contracted systemic candida fungal infection which 4 years later is still treatment resistent. I obviously stopped the humira at that time but I continue to suffer from this infection. I now struggle with this as well as the arthritis. I am now disabled bc of this infection and can't work, can't eat without getting sick, I burn from head to toe everyday bc the candida causes constant allergic reactions to foods, and I developed chemical sensitivites and get ill from any colognes, perfumes, car exhausts and any scents. I have to take benedyrl every 4 hours to prevent swelling and anaphylaxis. I cant sue abbott labs (the manufacturer of humira) because they are too powerful of a company and no lawyer will take my case bc abbotts has 100's of lawyers at their disposal. I have a clear cut case but i cant touch them. It kills me when I see drs such as S. Kaul give advice when they do not know the dangers associated with biologic medications because they are told these medications are safe by the manufacturers. Shame on them.
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