Humira

[Kimberly511]

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

[Brandi]

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!

[PamelaU]

I have psoriatic arthritis, and severe psoriasis, I just started the Humira on 2/22/17. Since starting this drug, I get terrible night sweats, two to three headaches a day, I am sure I have strep throat, snores on the left side of the roof of my mouth, sore throat into my chest, pain in my stomach, lower and middle back, pain in my arms elbows, throbbing sharp stabbing pain in my right side of the neck into my right lung (chest) area, goes under my right arm, and just today I have numbness in the middle finger on the right hand, and bad pain in my right elbow. Also pain in my left arm, almost feels like it's in my bones.  I was very skeptical to go on this drug for seven years I fought it, but the psoriasis has spread like wild fire over 65% of my body. Calling my doctor in the morning.

[clns]

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.

[clns]

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

[tjoan910canadian]

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

[rickjon]

humira has not worked for me, caused drug induced lupus

[rickjon]

waiting on a drug called leukine

[anderon830]

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.

Pat

[coughting]

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.
Good luck.

[Kimberly511]

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

[coughting]

If you have a temp it probably means your chorns is active.  You need to see your dr about getting some antibiotics.
Good luck

[clns]

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

[coughting]

Have you started the Humeria and is it helping?

[Kimberly511]

The Humira will arrive Tuesday....nervous and anxious!!

[coughting]

I think you can now get novicaine from the dr. so that it deadens the injection areas.
Hope it works for you.   Will be waiting to hear.

[Kimberly511]

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!!

[coughting]

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.

So best of luck - you are on your way.

[Sondra1952]

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!

[poseidon5]

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.

[pro2675]

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.  

[pro2675]

I am trying to find out what levels are checked when they do my blood work?  On the humira I have it drawn every 2 months.

[hunda]

Humira is a miracle drug!!! I take one shot a wrek and I'm in remission

[lizziecee]

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
haemoglobin estimation
red blood cell count
haematocrit
mean corpuscular volume (MCV)
Mean corpuscular haemoglobin (MCH)
platelet count
neuthrophil count
lymphocyte count
Monocyte count
Eosinophil count
Basophil count.

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

Take care, all of fellow Crohnies.
Liz.

[Phil2_5]

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.

Tom

[pro2675]

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..