Long Term Humira?

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Sparkle2012

Sparkle2012

Joined
May 29, 2012
Messages
458
Hi - Is anyone using Humira for long term? I have the Crohns DX (no symptoms after surgery X 1 year) and after steroid treatment I developed chronic joint pain. I am being tested for Rheumatoid arthritis....hand xrays and blood work...next week and once again I'm being pushed toward Humira. The Humira support groups spends a lot of time talking about painful shots. I would like to hear how the Humira is working and if there is anyone using it long term -- side effects, etc? Any horror stories or happy endings? I'm really weighing out crippling arthritis vs Humira.
Thanks all.
 
Good question... There must be a lot of side effects because the company certainly covers themselves with disclaimers. The disclaimer insert is very scary to say the least! I am sure the doctor prescribing doesn't want to take any blame for it's side effects either. Let's face it they are going to cover themselves if does have bad effects and you are at their mercy. If it works with out lasting or permanent side effects that outweigh the disease then it is great! Keep in perspective this drug is not proclaimed to be a cure and there is no known medical cure for this disease.

It is too bad there isn't a disclaimer of the statistics of all known side effects of probable cause that is from a non related than the manufacturer as well so the patient can be part of the decision because of this drug being a biologic treatment.

Some religions and politicians are concerned with things such as stem cell treatments but are they overlooking biologic and chemo treatments with ethical life concerns as well? There is a huge economy around all of this which is great as long as it is all ethical or the right thing to aide life.
 
I believe that drug companies reward physicians in some way -- maybe as contributors to patient statistics....the physician's main concern is promoting the drug since statistics are showing only a percentage with problems. If that were his/her child, they might be concerned with the percentage of problems. That being said - we are their patients and many are anxious to get us in the program to prove it is a safe medicine. Some care - many don't. My family practitioner won't prescribe anything that hasn't been studied for 10 years...I'd say he cares. But everyone else is handing me the powerful medicine like it is an aspirin '''''here....take the humira....see how it shines in the light?....take it....it's beautiful..." Truly. That's how I feel about them. haha
 
I used Humira for two years with good results. However, it did stop working as the ulcers healed in my colon but moved into my small intestine. They bumped me to every week, but I would get tremendous migrains. Cimzia is next or Remicade. The shots weren't bad compared to bleeding ulcers. In fact, they were a walk in the park. I never had any side effects, it just didn't control the Crohn's after awhile.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.
 
Thanks Louann---- I see you have my family name "Carroll." :) We are Carrolls from WVa. I wondered what the recourse was when Humira stopped working. The body is a tricky thing isn't it? I really appreciate the information you shared! Thanks again!
 
My son has been in humira for over eight months .
No real issues .
His weight has increased to what it should be and he is growing like a normal kid.
The humira phamplet list all the possible side effects .
Possible does not equal probable .
Try reading the insert on Tylenol once -it aslo has a lot of possible even fatal side effects .
Just saying .

No side effects here just a.completly normal colon and scope.
 
There are some people on this forum who have been taking Humira long term. I think they just haven't seen this question. AFA only prescribing drugs that have been in use for 10 years or so, Humira has beenin use that long.

There are other new, similar drugs coming out all the time. I don't think your doctor is just prescribing it for some drug company. Doctors usually do the best they can for their patients. The damage to your intestines if the disease is not treated is worse than the side effects of Humira, unless you are part of that tiny percentage that gets Lymphoma. Even then, you have a better % chance of getting colorectal cancer if you have Crohns. Hang in there, and if you really don't trust your doctor, find one you do trust. It's important.
 
Thanks Miss. I've had some bad doctors. :) I have strong cancer on the paternal side of my family and this does concern me. They all died early 70's with cancer. On the other hand, my maternal side lives to 90's 100's. That being said, I have a lot of life to look forward to if I follow the maternal design. haha And I don't want a medication pushing paternally. I make light of this but I'm extremely worried. It could be that I'm over reacting to what you say is a tiny percentage. I would feel much better knowing that there are people taking close to the 10 year mark and still on Humira which tells me it still works after all those years for some and they have not been part of the tiny percentage. If you know of anyone who has been on this medicine for a fairly long period, I would love to connect with them. It was ease my worries a great deal to touch bases with someone who is having success with it longterm. Thanks again for your info. Finding a good doc is not easy....I hate to keep flipping and I'm on doc #3.
 
Also the remark I made is based upon GI#1 who put me on Humira before thoroughly testing me to see if I actually labbed out Crohns. I gave the humira away after the second opinion GI#2 who said I needed more testing before I have that DX. Said this does NOT look like Crohns with these tests. What was the big hurry? Does this GI put everyone on Humira who has some symptoms? How many people are taking it from him who don't need it? Scary. He also said that pill cams don't get stuck and yet I had one for 6 weeks and had a horrible attack when I was out of town. He still didn't test me. GI #2 asked me up front --- did your pilllcam exit? let's test. I could go on but you get the drift.
 
Just this morning, there was a spot on our local TV station that said Big Pharmaceutical company's were not longer going to give doctors "Kick-backs" for prescribing their drugs, after some kind of lawsuit. hmmmm.....
 
bobisacrohny said:
Does anyone have solid results/facts of the effects of Humira that can be shared?
Click to expand...
My wife has been on Humira for about a year and a half. I don't know if I would go as far as calling this a "fact", but it does seem she is a little more susceptible to infections, including colds and things like yeast infections. It isn't a black and white thing, more like a somewhat darker shade of grey.

On the flip side, it has done wonders for her Crohn's; not completely gone, but a lot better.
 
Hi, I was on Humira for 4.5 yrs from Feb 09 to May 13. I was doing well all the way through (had moderate/severe crohns since age 11, had extended right hemicolectomy @ 17 and remicade which stopped working). I asked my consultant if I could see how I'd go without Humira and I lasted 5 months until I got this flare that I am trying to stop. I am going back on Humira on Friday for as long as it works. It did great for me and I wish I hadn't stopped it. You do get the odd infection - colds, skin problems etc but we get those anyway having crohns and I'm not sure Humira is solely to blame for that. I worry about the lymphoma etc but the benefits outweigh that worry and I have decided I have no choice but to take that small risk. I tried polymeric diet (6 weeks) for this flare but it hasn't worked, I can't wait to start Humira again and have some normalcy.


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Hi Lulabele! Glad to hear you did well on Humira long term. That eases my worries - those commercial terrify me! Hope you get that flare under control. Would love to know how you do when you restart Humira.
 
I'll keep you posted. I am pretty apprehensive about restarting it due to possibly building antibodies. I would be pretty devastated if it wasn't as effective but there is nothing I can do but start it and see. I am unresponsive to remicade now, refuse pred and won't touch things like methotrexate while I am off child-bearing age, so I'd be a bit snookered :/ it needs to work.


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3½ years, no problems. H changed my life. It closed a perianal fistula in two days after I had surgery for it twice. I feel better now at 58 than I did at 38 when Crohn's was first diagnosed. I am told that being on Humira is for life or until it stops working.

Good Luck
 
On Humira for a year now.
Was off of it for 7 weeks because of prep for surgery and post surgery. Restarting tomorrow with just one dose again every other week.
Being a 26 year old guy, where the cancer risk is greater, this terrifies me every day. Especially since I dont feel the symptoms as much (fortunately) as others do. However, I am called moderate-severe due to the scarring I had just removed. So mentally its hard to grasp when you cant see/feel it.
I posted a thread like this as well since I wasnt able to find much info on those using Humira for longer than 2 years. Seems it fails for many at some point and so the stats are cloudy.
Lets hope for the best while we wait for a real cure and not a possibility for remission that can cause cancer type of treatment.
 
Sparkle2012
Today is my Humira day the shoot doesn't hurt, thinking about giving yourself the shoot cause's more problems than the actual shot. Been on Humira almost two years all is well so far. As far as doctors that deal with nothing but crohn's here in Florida Doctor Sarah Glover at Shands in Gainsville is the best in my book you might try and get in to see her.

I hope 2014 is a great year for you, take care.
 
I've been a Crohns sufferer for 5 1/2 years...the closest I have been to remission had been with Humira. I had to be off of it for 5 weeks for pre/post surgery (had tonsillectomy, which I must say was absolute torture) and having a hard time getting back to where I was before the operation, but Humira has been amazing for me. I have been taking it for 18 months and have graduated to a shot once a week, which is what brought me very very close to full remission. Yes, the shots hurt. Yes, they are worth it. Good luck on your decision!
 
I've been on it now for 9mo or so.. Really seems to have made a difference, I was never in much pain, just bleeding and a sore butt.. The capsule showed alot of inflammation in my small intestine and scarring so they pushed humira.. No problem with the shots, they really aren't bad at all.. I hardly bleed at all now, and never really realized how much discomfort I had from the crohn's until about two months after starting it when i no longer had any.. the only thing i have noticed with humira is i seem to get sick easier, tonsil infections twice and a sinus infection that took weeks to clear up but that is nothing compared to the pain and bleeding i was having without humira, the cancer risk is scary, but i think the numbers are 2/10000 without humira and 4/10000 wth humira not much of an increase when you think about it..
 
i thought I saw 50% somewhere. I'm glad I saw your post on the cancer thing. I'm not having Crohns symptoms but am very worried about this arthritis -- don't want the darn disease destroying my infrastructure! :( I may consider it depending on the test results.
I consider your post a positive read. Thanks so much from me.
 
It's officially been 2 years now, and after my last colonoscopy and pathology results, my doctor added 6MP to the twice a month Humira shots - it seems to have taken hold and is kicking some Crohn's butt.

I think we've all been through the bad doctor, misdiagnosis thing. I ended up being diagnosed after emergency surgery in 2008. If I had been diagnosed when I first got sick it would have saved a lot of grief.
 
That is also how I got a firm diagnosis. I had a bowel resection and diagnosis same week.
Oh and the Prometheus confirmed.
 
Sparkle2012 said:
That is also how I got a firm diagnosis. I had a bowel resection and diagnosis same week.
Oh and the Prometheus confirmed.
Click to expand...

Prometheus also.

My surgeon brought my G. into my hospital room and when I answered his questions, he just shook his head the whole time. Turns out if must have been an angel who brought him to me. He's all over MedScape, has edited a bunch of G, and medical journals, the NEJ of Medicine, and he's chief of gastro at the nearby hospital affiliated with we well known medical school.

When I told him I thought an angel brought him to me, he grinned and said "don't believe everything you hear."

Blessed I am - regardless of the past.
 
Last edited:
I had a wonderful surgeon too -- he specialized in minimally invasive surgery ...took the gallbladder and the small bowel resection same time mostly laparoscopically. No pain after - no need for pain killers at all. We are both blessed!
 
I was diagnosed in 1987, and I've been on Humira since July 2006, along with 6mp. I started taking Humira within a year of a resection surgery, when my disease returned. It took about 6 months to get everything balanced with Humira and the 6mp. The last major flareup I had was in 2008.

For me it has been life altering. I've had several extended bouts of bronchitis, and minor skin infections. I consider that a small price to pay.
 
Thank you so much for sharing your story. It is good to hear some supportive feedback regarding Humira as I know there are many happy stories about it. Thanks again!
 
amber_griffin said:
Just this morning, there was a spot on our local TV station that said Big Pharmaceutical company's were not longer going to give doctors "Kick-backs" for prescribing their drugs, after some kind of lawsuit. hmmmm.....
Click to expand...

It's about time. It's AGAINST patient care in my book. They give you the meds whether they support or have strong knowledge about them or not -- for the kickbacks. Not a reputable practice in my opinion.
 
I know they say Crohns patients have "skin" issues but I am unclear as to what they are. Here is what I have. I get "pea or smaller sized rough places" on my skin...sometimes they have a dark pink color....they annoy me and I scratch them off which makes things worse. I have 5 places on my legs right now that if left alone, they go away. But it's become a sort of ...habit with me. Anyone else have anything similar?
 
Have you seen a dermo about your skin issues?
Tnf alpha blockers sometimes bring skin issues to the surface.
They typically don't create skin issues but if you are prone to them then they are more likely to happen while on a biologic at least according to our dermo.
Most dermo that have crohn's experience can help you with that .
Good luck
 
My daughter he seemed to develop the same thing. Looks like I'm off to the GP to get a referral to a dermatologist! When we were in the hospital the doctors asked if she had psoriasis so I am thinking she is developing it. I have it so she may now also.
 
I have a touch of something - maybe eczema made worse because I can't leave it alone. Not on biologics yet. My family is full of psoriasis and eczema and some other skin problems like vitiligo, dermatitis etc. The doctor froze one of them last time I was there and it went away, now I have more. guess another trip to the derm is in order. Just wondered if anyone else was experiencing these little spots.
 
I've been on Humira for a while (after developing an allergy to Remicade and not having luck with Cimzia), and I haven't noticed any major side effects (even with being on a weekly dose). The cancer risk is what concerns me most but a slight increase in risk is worth quality of life to me now.
 
hi everyone new to forum .i have been on humira before it was approved for crohns .i was part of the study group.i currently take double the dose one shot every week as opposed to every other week ( its a nightmare with insurance )..also on 50 mg 6 mp .i have had very good results .no issues .tried remacade before humira did not do anything for me .hope this helps
 
I've been on Humira since July of 2008, I diagnosed in late 2007 with Crohn's. I did have resectioning done in summer of 2009 and remained on Humira and Pentasa since. I haven't had a flair-up since, knock on wood. I haven't noticed any reactions to the Humira as of yet. My doctors talks of the Humira as a long term solution for my Crohn's disease so I guess I'll keep chugging along with it.
 
I usually try to chime in on these threads, but must have missed this one. I've been on Humira longer than most Crohn's patients out there; almost 12 years now. I started in the clinical trials.

I can honestly say that outside of some skin issues with my scalp (which may or may not be from the drug), I have had ZERO side effects so far.

I inject once per week (I will second that the higher dose is a nightmare with insurance) and have been in full remission for over a decade! I still need to watch what I eat a bit, but nothing serious.
 
I have a simple answer to the question about long term Humira use, and that is, I don't care. The reason I don't care is because without Humira my life was an unlivable hell. So as to the side effect that I may have in 10 to 20 years, at least I lived that long to see those days! For me there is no other solution. remission is too beautiful. I say this in spite of fighting an infection from a cat bite right now. The dr. gave me an antibiotic and told me to hold off on my next Humira dose, feeling better already.
Life can be good, or life can suck. Do the math.
Good Vibes to You All!
 
I've been on Humira for 5.5 years now. It has been a miracle drug; however, the sinus issues (heavy post nasal drip) may cause me to come off of it.
 
Was on Humira for a little over a year. Did wonders for my Crohn's. Been off Humira for 6 months now. Still having different strains of reoccurring lung infections.
 
I am supposed to get tested Wednesday to see if there is enough in my system. If not, I may have to start weekly instead of biweekly
 
I didn't go through all the comments (I'm afraid) but I haven't heard of anyone responding to Humira and just taking it short term to be honest. That also wouldn't make any sense to me if you finally find something that works and keeps you in remission but then you need to stop. Only reason could be your health system/insurance but apart from that I don't see any reason if the disease would get active again after stopping.
 
ronroush7 said:
I am supposed to get tested Wednesday to see if there is enough in my system. If not, I may have to start weekly instead of biweekly
Click to expand...

the old level used to be good if above 5. Now it needs to be like 8-10+, with no antibodies. My insurance didn't want to pay for double the dose, so I just switched to Remicade since the normal dose Humira wasn't doing anything.
 
I was on humira for 3.5 years and put my Crohn's in complete remission. I got sore throats quite frequently, but nothing more serious than that. However, in January I started having widespread joint pain and extreme nausea. My doctor can only put it down to the humira. I developed an infliximab lupus response 6 months after starting the infusions, so not that suprised that my body might have started to reject humira too. I'm now 2.5 months off the humira and still feeling crappy, but Crohn's is still in remission...
 

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