Humira Club Support Group

Crohn's Disease Forum

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I'm not sure how to join the Humira club? I don't see a link, but anyway I have been on Humira for six weeks, and I feel fine. I was on a 4-3 2-1 prednisone taper just before I started the injections so I'm not sure if it is the Humira or that the pred had reduced the inflammation to the point that my BM were ok. The first injection that the nurse did hurt like hell. I think she was pinching the skin to tightly and pressing the pen to hard. When I did the next three they were not as bad, and the biweekly injections are a breeze. I had issues with the Pred. It gave me an irregular pulse . Faster sometimes and skipping a beat sometimes. Once it went up to 120 bpm for two hours. I ride a bike so having a HR of over 120 bpm for hours is not that big a deal, but not while I am sleeping=). My GI was concerned so he had a friend of his call me and schedule an appointment for the next day. They did all kinds of tests and all seemed well. Next I had to wear a heart rate monitor around the clock to see what was going on. They wanted me to trigger an "event" so I did that by riding my bike and walla
It showed an Afib event. Scared all of us. They wanted me to go on drugs to help regulate my HR right away. But at the age of 62 and never having had anything like this happen before, I suggested we wait until I was off the Pred, and BP meds along with not taking a
statin fo 60 days, and agreed to no exercise until the Pred course was complete. So I did all that and started exercising three weeks ago, and you guessed it. I'm doing fine with no meds. My BP went down from 150/90 to 135/75 when I stopped taking Lisinapril ?? Go figure. My heart has not skipped a beat since I stopped the Pred, and I have had my HR up to 155 bpm, and again no issues. I mention this only because the Doctors did not see heart rate as a side effect of the Pred and to tell the truth they kind of did not want to listen to be. Now I'll probably croak
of a heart attack tomorrow and they will say "told you so", but if I don't ???? Sometimes I think we need a break/reset on our meds to know what is going on with our bodies. I have CD and UC and was diagnosed about 15 months ago. Aetna has been wonderful and my hats off to them. Can anyone tell me how long these different meds seem to work? I have noticed that everyone seems to do ok for a period of time and then they relapse and have to start a different drug.
All smiles in TX. (at least for now)
 
kurtflies12, There are a few studies which might answer your question about how long Humira will last if it's working for you. You can find them collected here: http://bit.ly/18i9cmQ

I recall reading a study about Remicade, which is similar, and it seems like about 15% of people were still talking it 7 years later. The reference is here: http://bit.ly/14AuVDH

In my own experience Remicade lost its efficacy slowly over about 5 years to the point were it was useless. It's a fairly common result for people who benefit from it and don't have side effects.

Do you feel like you're aware of the potential side effects of Humira? Here's a link to a timeline of how the disclosure has changed since the drug was approved: http://bit.ly/17y811I
Just FYI it appears from reading through people's treads on this side that physicians aren't always aware of latest list of side effects and FDA disclosures.
 
Thanks Kss. I'll check out the links for sure. When I went from mild to moderate to severe with the CD, my GI wanted me to try a gluten free diet so I have been doing that (95%) and I have also been juicing in the mornings. I started all of this at about the same time, so it is kind of hard to tell what is working or what caused the improvement . I'd like to stop taking the Humira at some point to see if the diet could be playing a part in my illness, but I also don't want to screw up the process with the Humira. It just seem to me that I made it 62 years with very few problems, so if I change my diet in a healthy way I wonder how long it will take before either the CD of UC come back? If I stay on the drug until the CD does come back, then how do I know it would not have come back anyway, even it I were not taking the drug? Most doctors that I know, once they start you on a drug treatment plan they don't want you to change it, but I don't know if that is such a good idea. I know I feel 100% better now that I have stopped the statin and BP meds. I guess time will tell.
Thanks again
 
Wow kurtflies12! I think you bring up a lot of very important points. And that's great your doctor suggested a gluten free diet. There's a site called Crohnology.com which asks everyone about different diets they're tried. Gluten free gets a lot of positive response. So does avoiding beer and meat. You can see some of the results here: http://bit.ly/T7taG7 For up to date diet info you'll have to log in and search around for the latest chart.

As for stopping medication I have an experience you might like to read. It's about azathioprine but you might appreciate the sentiment given you stopped the statin and BP meds: http://bit.ly/PL03Je

If you end up stopping Humira please let us know how it goes.

Also, you mentioned you were diagnosed with Crohn's and UC about 15 months ago. Was there any sort of extremely stressful event that happened around then? I ask because it seems like when people in their 60's are being diagnosis its around the time they lose a spouse or have some other tragic event happen.
 
Just restarted on Humira after about 2 and a half months off with 'mystery' illness. I'm on weekly injections for 4 weeks and then back to fortnightly, hopefully still works for me (feeling pretty yuck ATM).

Anyone been through similar?
 
After months of going against my doctor's wishes I finally started humira 1 1/2 weeks ago. The shots were not as bad as I was expecting. I noticed some improvement after one week in regards to the amount of intestinal pain I was in.

However, the day following the first dosage (4 shots) I woke up with lower back pain. This pain has been persistent and hasn't gotten any better. Has anyone else had this side effect?:sign0085:

I will be due for my second dosage (2 shots) in a few days

Note: I was originally prescribed a 6MP but ended up having an allergic reaction. So after exhausting my Entocort prescriptions I had no other choice but to start Humira.
 
newbie4,

Others have had back pain problems, too. If you like you can take a look at rxisk.org and type in Humira. You can then view the side effects. Here's the link directly to a wordcloud that's in alphabetical order: http://bit.ly/1627N1x
It looks like there are 2,120 reports of back pain.

You can report your side effects using the site.

Also, I think there are other alternatives to explore other than Humira. FMT comes to mind: http://bit.ly/1bm7R2y

FYI there's still the AbbVie petition you might like to sign. http://chn.ge/13clTyF
 
I am about to start Humira :dance: I have been off of it for 2.5 years and more than ready to be back on it. I had great success with it in the past. My question is... How many of you give it in the thigh? I can not safely inject it into my abdomen, and I imagine the thigh will be more painful. Just trying to figure out what to expect
Thanks!
 
I refuse to ever put an injection pen in my thigh again. It is a much more intense pain, but as with the stomach, it dissipates within 30 seconds. I've heard of some people doing it in the back of their arm, which seems like it would be a bit more tolerable than the leg.
I just did my injection last night. I'm on month 2 and I haven't experienced any notable side effects except for fatigue following the injections. Best of luck with this powerful medication.
 
Doctor will be prescribing Humira tomorrow. I have signed up for the Humira protection plan. I am a little concerned because my GI uses a company that does all the insurance verification and ordering the medicine. I have all the information I need. And will give this to the doctor tomorrow. I fear the "company" will miss using this info. Anyone have any experience with the Humira Protection plan and such "companies"?
 
I'm a little confused as to why it's called a Protection Plan. What exactly is protected?

The link just isn't clear to me. Are they trying to get you to purchase insurance against someday potentially not having insurance that covers Humira? Is that right? Or are you paying for a discount on your co-pay for Humira?

What is the cost?
 
This is a service provided by the manufacturer. The plan helps offset the costs associated with using Humira. Depending on one's insurance company, the cost to use Humira can be as much as $4000 for the starter kit with no insurance. The protection plan helps offset copays. One could get it for as little as $5.

If you click on the link and go to the faqs it talks about this.

They will contact your insurance company should you be denied coverage and try to work out something.

Also they have a financial fund available for those with no insurance.

There is no cost to you for the protection plan.
 
That's interesting. AbbVie, by the way, makes Humira. It's a spin-off of Abbott. I'll take a look at the FAQs. I missed that part.

Just so you're aware there's a petition at change.org about getting AbbVie to release clinical trial data. You also might like to check out the Humira timeline just so you're well informed about how Humira's risk profile has been adjusted over the years. http://davidhealy.org/abbvie-humira-timeline/

Also, rxisk.org has a collection of side effect information you might want to review before taking it. You can also report your side effect info there.
 
I've been using the humira protection plan for years. I do have to remind my specialty pharmacy to use it when I refill my medication. I can get 3 months at a time for $5 versus my $50/mo copay. Can't beat that! A lot of drug companies offer these savings cards, which are basically coupons off your copays. They can't be used with state/federally funded insurance. Whenever your provider prescribes a brand name drug I would suggest checking out their website to see if they have a savings card/plan.
 
I have a question for KSS,

As I find your insight very helpful (thank you), I am a bit curious on your intentions. It seems as though you are against the use of Humira, do you have any personal experience while on the drug that didn't go so well?

I must be speaking for others who also found the courage to start using the drug and must, once again, start worrying about these side effects when coming to this support group due to the warnings you post about the drug after someone states they will be starting its use.
 
newbie4 said:
I have a question for KSS,

As I find your insight very helpful (thank you), I am a bit curious on your intentions. It seems as though you are against the use of Humira, do you have any personal experience while on the drug that didn't go so well?

I must be speaking for others who also found the courage to start using the drug and must, once again, start worrying about these side effects when coming to this support group due to the warnings you post about the drug after someone states they will be starting its use.
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Thank you for this reply. I was wondering the same thing.
 
Oh, I'm not for or against Humira. I'm for patient's informed consent. Humira certainly has its place as a treatment option but it's an extremely aggressive solution. And it's very easy for physicians to prescribe. (Certainly a lot easier and less time consuming than trying to help a patient manage an elimination diet, for example. Distorted incentives, no?)

What I'm against are drug companies claiming clinical trial data is proprietary. That's wrong. AbbVie/Abbott is a top offender. They've also recently had to pay 1.5 billion in fines over marketing deception (May 2012 under Abbott). See Big Pharma's Big Fines at Pro Publica. The fines were for illegal promotion of Depokote. Why think Humira, a much more lucrative product for AbbVie than Depokete, is any different?

And just FYI there's at least a dozen lawsuits in Cook County, IL, USA against AbbVie/Abbott because of Humira. I should probably collect them into a blog post and share. Here's news about one of the recent lawsuits. And there's more you can find at the Vickery Law Firm website. They posted some of case filings on their site.

And I've never taken Humira. I had Remicade for years and was blissfully unaware of the dangers. The only hint I got about its side effects was a nurse who insisted than an Epi pen be within arms reach of my IV. Had I known what the side effects were I probably would've been more proactive at finding a way to control my Crohn's w/o it. I did not give informed consent because I was not informed.

Lately I've been leaning toward a pharmaceutical company's culpability as a part of a patient's informed consent. I also think AbbVie's culpability should be a factor in the physician's understanding of a drug's risk profile. What do you think?

:)
 
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Starting Humira next week. I am very nervous. Feel like crap between weaning off prednisone and Crohn's symptoms. I don't want another side effect.....:depressed::depressed:
 
LodgeLady said:
Starting Humira next week. I am very nervous. Feel like crap between weaning off prednisone and Crohn's symptoms. I don't want another side effect.....:depressed::depressed:
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Good luck! I was very nervous too when I started years ago (mainly stemming from issues I had with remicade). I even brought a friend with me to my appt for moral support. The first few years that I used it were my best ever. I had forgotten what it felt like to be "normal". I haven't had any major issues with it since (just a little site reaction, and it stings for about 20sec), it just has become less effective over time for me. I'm afraid of an increased risk infections, I try to be as careful as I can be, get my flu vaccine, I can work from home, etc and I haven't noticed that I catch anything any more frequently than before. Hope all goes well, I know it's a big step!
 
ehCrohnie said:
I've been using the humira protection plan for years. I do have to remind my specialty pharmacy to use it when I refill my medication. I can get 3 months at a time for $5 versus my $50/mo copay. Can't beat that! A lot of drug companies offer these savings cards, which are basically coupons off your copays. They can't be used with state/federally funded insurance. Whenever your provider prescribes a brand name drug I would suggest checking out their website to see if they have a savings card/plan.
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How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt
 
kurtflies12 said:
How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt
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If you use mail order you can get a 90 day supply for the one copayment. Your doctor needs to make the prescription for 90 days with 3 refills. That's how I get it with other prescriptions. Hope it can be done with Humira. I'll soon find out!
 
kss, just wondering, are you on any treatments now? And what works for you? I'm thinking of giving it up. After 3 months, I still have more discomfort with humira than without.
I've been following a diet reduced in grains, mostly wheat, sugar and dairy. My guts feel better when I don't eat much of those foods.
 
kurtflies12 said:
How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt
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In addition to what is noted above, it also depends on your insurance plan as they vary widely. Some plans only allow 30 days for a specialty drug regardless if they obtain it through a retail pharmacy or through mail order. You can ask your pharmacy benefit manager/mail order company if your plan covers 90 days at a time. They can also tell you if your provider will need to call in a prescription with appropriate refills.
 
SylviaA,

kss, just wondering, are you on any treatments now?
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I stopped taking prescription meds 2 1/2 years ago. I've posted more info here.

I've been following a diet reduced in grains, mostly wheat, sugar and dairy. My guts feel better when I don't eat much of those foods.
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I eat mostly gluten free and vegan with low added sugar. Seems similar to you. And I don't eat processed foods or drink alcohol. And I've recently tried L-Glutamie which seems to help.

But before we get too off topic I know of one other user who reported stopping Humira: Paul Cronk in this tread. There are probably lots more. Let me know if you come across any.

I just checked Crohnology.com for what those patients have said about Humira and the site has a section on what patients try after Humira with a nice pie chart. There's the link but I'm sure you'll have to sign up to see it. The biggest slice of the pie is Remicade.
 
afidz said:
I am about to start Humira :dance: I have been off of it for 2.5 years and more than ready to be back on it. I had great success with it in the past. My question is... How many of you give it in the thigh? I can not safely inject it into my abdomen, and I imagine the thigh will be more painful. Just trying to figure out what to expect
Thanks!
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I do them in my thighs. I admit it is painful. I have my husband do it so I just focus on relaxing as much as possible for the 10 or so seconds and then it's done. Immediately following I treat my self to a yummy snack and a funny show/movie and go to bed :)

Hope you have returned success with it!
 
Afldz
I do DS's in the thigh.
It does really hurt.
His rhuemo gave us a script for lidocaine to mix with the humira to reduce the pain of the injection.
It really works for him.


kss-
As far as risks of humira and going drug free-
it is wonderful IF that works for you
BUT most people who are on humira have tried all the other drugs and food elimination diets and still did not find relief.

my child's doc tried every possible combination before he was placed on remicade and only after TWO allergic reactions ( with steroids ) did he switch him to humira.

I am upset that you would suggest that ALL doctors prescribe it easily without trying other options ( and yes my son was no foods for over 9 weeks).
I am also upset that you think that others are not informed of the many many things that could go wrong by using drugs like humira.

Risks well just pull the studies - most of the biologics have similar known risks.
Some are better and some are worse but that doesnt mean a whole lot if the drug does not help you get to remission. If all drugs work well for a person then you can chose to take the less risky drug ( I mean who wouldn't). But crohn's doesn't work that way for some.
The one risk I know is that without crohns disease that is under control my child who was dx at age 7 has a severe clinical course predicted period.
No other drug or food diet etc... has slowed down his disease except for TNF-Alpha blockers.

It is not kind to constantly comment/judge those of us who take those risks either for ourselves or others that you do not have confront at this point.

AND Yes I have pulled lots and lots of technical papers on biologics and children.

I also put my child in a car every day - the risk of dying is 1 in 250 in the US for kids under 14.
The is risk of the T-cell lymphoma 4 in 10,000 for those on biologics plus immunosuppressants.

I am sticking with the humira for now since it is the only drug choice we have left until something better and safer that works comes along.


I think its important to focus on the benefits as well.
I get my kid back.
He can play , go to school, and not be in pain twenty-four seven.
 
I'm not sure where kss stated that all doctors prescribe it easily, or did I miss something :/
I find the info he put out there is great for the ones that Humira doesn't work well for. And as he said, it has it's place.....I feel, for me, my doc was quick to prescribe biologics, I had been doing just fine for over 11yrs without meds, then got an abscess then all went downhill from there on with all the wrong decisions made. My surgery could of been avoided if only a different approach would of been done, and my doc admitted that.
And diet seems to be more effective for me than meds.
I'm really happy it works great for your son though, if only everyone could respond to it as he does. Hope he's coping well with this disease. Can't be easy for a child and for mom either.

A bit off topic:
kss, I'm not vegan, far from it. But I do not eat highly processed foods, mostly veggies, pasture raised meats/eggs and as far as dairy, only yogurt and a bit of organic cream in coffee(I need to eliminate, but it's hard) and avoid GMO I could go on and on about food, but I'll leave it at that.....And thanks for those links :)
 
I also think it depends on the doctor's philosophy to manage Crohn's from the "top" down or "bottom" up. Top down is more aggressive and try's to manage it hard and fast. Bottom up is starting with least effects then switching or adding once those drugs don't work.

I have tried to manage with diet. Prednisone for 3 months. My doctor is a "top" down approach physician. He wants to get it undercontrol as soon as possible. I have to have faith because for so long I had a doctor who didn't even rule Crohn's out. Not until I suffered long enough and switched doctors did I finally get an answer.

I have to pray this Humira works and or I don't get sicker from side effects. I have learned that we can not control everything in our lives.
 
Humira has been a life saver for me. I've been on it for almost 2 months and have been virtually symptom free. I don't know what I would have done without it so for me it's worth the side effects.
 
mylittlepenguin

That's great Humira is working for your little penguin. Remicade worked for me for about 5 years.
:)

BUT most people who are on humira have tried all the other drugs and food elimination diets and still did not find relief.
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How do you know? (ref, please) And fyi that's not inline with my experience.

I am upset that you would suggest that ALL doctors prescribe it easily without trying other options
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I said it was less time consuming to prescribe Humira than to manage a patient's elimination diet. It's not a contentious statement. It's nearly always easier to prescribe a drug than to rely on a patient to change their behavior. It's the convenience factor (see Ch1 of Big Pharma by Jacky Law for an excellent discussion).

I am also upset that you think that others are not informed of the many many things that could go wrong by using drugs like humira.
Click to expand...

My evidence are the recent Humira lawsuits and the company's recent criminal culpability. Given the marketing habits of AbbVie/Abbott and fines they've paid lately it's better to make sure patients are as honestly informed as possible. Abbott/AbbVie paid a criminal fine levied by the Department of Justice of 1.5B just last year. And fyi the recent lawsuits against AbbVie/Abbott wrt Humira also contend with physicians not making their patients aware. So not only are patients not aware but neither are some physicians! There's currently litigation in Europe which is trying to get AbbVie/Abbott to disclose clinical trial data. It fact there's a very transparent dialogue between Neal Parker of AbbVie and Flamina Macchia of Eurordis you might like to read. It's recent. I think it was just last month. It gives a lot of insight about how the company thinks.

And please don't forget about the Humira timeline! It's a lot of work for physicians to stay up to date on all this sort of info. They're swamped with work and things have changed a lot since it was first approved by the FDA.

mylittlepenguin, If you might humor me, ask your physician about the "Dear Doctor" letter they received from Abbott regarding Humira. If you get a blank stare say "Drug Safety Communication Letter back in 2011". If you get a second blank stare you can be upset at someone other than me.
 
I just started Humira on the 18th. Had the four injections done in my legs and this past week my legs have been feeling kind of achy especially my knees. Just wondering if this a possible side effect from the injections or what? Is it something I will feel after every injection?


💜💛 Jen Hebert 💜💛
 
mrshebert11,

I too experienced this. I just had my 3rd dosage, it seems to only last a couple of hours and will typically go away. However, I experience back pain/soreness almost everyday ever since starting Humira but it is tolerable and doesn't seem too serious yet.

How is Humira working for you?
 
@newbie4- I am actually feeling pretty good but my doc still has me taking prednisone and Lialda with the Humira injections so I am hoping once I am only doing the injections I will continue to feel good. I have been on Lialda since July when I was first diagnosed with Crohn's but it just doesn't seem to be working the way it should.


💜💛 Jen Hebert 💜💛
 
@newbie4 and MrsHebert11 I too Am on Humira however I give my injections in my abdomen That's the location I was shown how to inject them at I have tried my legs twice tho and as you both said I noticed aches in my legs. With doing my injections in my abdomen I don't seem to notice as much pain. I have been on Humira almost a year now and about half way through I switched to the self injection syringes because the pens hurt way to much. That could always be an option to try too. Also I am on Lialda as well and have been for also almost a year I never noticed much of a difference when taking it but my doctor has explained to me that it is more of a preventive medication for me because it goes and breaks down and coats and protects the colon. Seeing so my major crohns problems are in my terminal ileum what he says makes sense to me and the medication try's to protect the colon. Also I know I'm writing a lot sorry I thought it might help to know some background I was diagnosed last October!! Did not respond to most medication and then that's how I was put on Lialda and Humira by Nov and Dec. A year later I can honestly say Humira has greatly improved my quality of life it's not perfect by no means but much much better also I am now on bentyl I was still recently having a lot of abdominal pain and cramping even tho my inflammation is way way down. We tried some other meds but this bentyl has helped a lot so if you are still having abdominal pain bentyl is awesome. I have stricturing so this medication helps with the cramping from that. One last thing don't get discouraged of you have some rocky moments with your Humira. I have had times where it randomly felt like it wasn't working but in the end I'm doing much better and overall it works great sometimes you just have to find the right combination of stuff to do and take! Good luck to y'all :)
 
HI i had been in the study with remicade and humira remicade nearly killed me and humira works great now for 5 years and bc i did the study and that i have a rare type of crohns i get it for free as long as it works:) as well I have tried many other treatments
 
Hi guys.

I was on Remicade from 2000 through 2009. I then started Humira. I started the Remicade for anus to skin fistulas, which it closed. I started Humira because by the time i was pregnant in 2009 i'd stopped and started remicade twice before and she didnt want me to take a chance on building up the immunities. I've not noticed any significant improvements with Humira. In a recent MRI, for something unrelated, it was discovered that i had complex / communicating fistulae in the rectum area.

I have Hidradenitis and Psoriasis, which Humira is supposed to help with. I think it is helping the Psoriasis but it didnt seem to help with the Hidradenitis. I also take Asacol for inflamation.

My question is, what is Humira for other than fistulas? If i still have complex fistulae then it seems to me there is no point in taking Humira.

Any feedback? Thank you.
 
I have no fistulas. I am newly diagnosed Crohns at the ileum. I've been prescribed it because I am failing prednisone weaning. It's supposed to have the least side affects of the biologics.I've only had my first 4 starter shots. Next two are this Friday. I did notice some relief during the first week. Hoping it helps me get off the pred. Best of luck to you.
 
mish2575 said:
Hi guys.

I was on Remicade from 2000 through 2009. I then started Humira. I started the Remicade for anus to skin fistulas, which it closed. I started Humira because by the time i was pregnant in 2009 i'd stopped and started remicade twice before and she didnt want me to take a chance on building up the immunities. I've not noticed any significant improvements with Humira. In a recent MRI, for something unrelated, it was discovered that i had complex / communicating fistulae in the rectum area.

I have Hidradenitis and Psoriasis, which Humira is supposed to help with. I think it is helping the Psoriasis but it didnt seem to help with the Hidradenitis. I also take Asacol for inflamation.

My question is, what is Humira for other than fistulas? If i still have complex fistulae then it seems to me there is no point in taking Humira.

Any feedback? Thank you.
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well i have been on both remicade and humira both seems to work for all symtoms of crohhs and other illness. have you tried methotrexate with it? or predisone? both these drugs can work together very well. ive been on it all and its hard to find the right mix when you got a rare type and 100% full of crohns
 
I was diagnosed with severe Crohn's/Colitis in May of 13 after almost a year of misery and pain. My doctor left me no options other than Humira. I started with four shots, two in my stomach and one in each leg. (The leg shots killed me, never again). I began to get relief two days after the first four shots and have been pretty much been sympton free ever since.

I also take Florastor every day as well, which is a pro-biotic. Side effects have varied, I still feel run down easily, i get an occasional headache, I also get cramps in my feet really bad, but have not found where that is a side effect. Overall, I think it was the right choice, I have gained all of my weight back and have a life.

I have been reading this forum since my diagnosis, and today I decided to share my story. :) This is where I have gotten most of my info about my disease. Thanks!
 
Titanette, I've had sore feet and hands since I've started Humira. It's a constant discomfort and some days I can't do much because of pain. A few weeks ago, 1 hand hurt so much I couldn't even do the easiest chores, even picking up a fork.
And welcome to to forum :)
 
Thank you for the welcome :) mine are just cramps at the end of the day once I sit down or go to bed.
Before diagnosis I suffered major pain in my feet and my hands. I had to get up hours before work because I was in so much pain I could not walk or hold a toothbrush. Humira fixed that as fast as 48 hours. It was crazy and I hope to never be there again. I still do not know how I worked during all of that.
 
forum contributor said:
Yup yup, very true - freeze the area and take the pen/needle out of the fridge for a bit to warm up a little (at least take the chill off!).
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When I was on it I used to take the pen out of the fridge and leave it out for 30 mins before injecting. Freeze the injection site for at least 2 mins with ice in a plastic bag to numb it. This procedure worked well for me.

Currently I am not on it, recovering from resection, surgeon doesn't want me on Humira until surgery site is healed completely.

Gra

2
 
SylvieA said:
Titanette, I've had sore feet and hands since I've started Humira. It's a constant discomfort and some days I can't do much because of pain. A few weeks ago, 1 hand hurt so much I couldn't even do the easiest chores, even picking up a fork.
And welcome to to forum :)
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Silvie, are you sure this pain is not a reaction to the Humira?
Gra

2
 
SylvieA said:
I never had aches like this before. It all started with remicade, and it continues with humira.
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So I assume that on balance the Humira is helping you in other ways, and so you put up with the pains. Have you tried maybe a lower dose of Humira (eg: taking it less often?)

Gra

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I never really had symptoms other than fatigue and fistulas, but the fistulas never bothered me. I never had the typical crohns symptoms at all. It pretty much just started last winter, where I got stomach pains, then one day I was woken up by pain on my lower right side. Ended up being an abscess, tried over a month of cipro and flagyl, wasn't doing anything at all. So surgery was done. Got loads of problems after surgery, but once healed I was fine, then started remicade, was allergic, then humira, loads of side effects, which got better other than discomfort to my hands and feet. Doctor doesn't want me off humira, and he prescribed purinethol to take daily, but I've never taken it because I don't want more side effect than I already have/had. I've noticed that my diet makes a huge difference how I feel, but doesn't get rid of that pain. So I'm really just on humira to prevent fistulas. But it's not healing a fistula I've had for over 11yrs, but it's not really active, so no leakage, other than occasional gas.
 
That will eventually go away. After my second dose even the fatigue wasn't as bad. I am already seeing improvement. Hang in there.
 
Good afternoon! I've been on Humira for almost 4 yrs and just started flaring. The doc has scheduled me for a new blood test (Prometheus Anser ADA) that is supposed to tell if I have developed the antibodies to Humira and what the levels of Humira are in my body (or something like that). If the results come back that the Humira is no longer effective, I need to start either Cimzia or Remicade.

How long has Humira lasted for you? I'm kind of bummed and really hating this flare.
 
Hey all, I wanted to post some encouraging news for once - it's been about 10 months that I have been drug free with life getting more normal everyday. I believe the humira did help (6 months of bi-weekly doses with little to no change - then 2 months of double dosing - then I just stuck to the 'no sugar, no starch, and lots of homemade yogurt' diet (SCD) and i've been holding steady. 2 movements a day and less urgent, but it took time. I even travelled to Europe (Sweden!). In the last month, some days it just have 1 movement a day.

Like everyone with CD CL, i was down and out. I was pissed i could get on top of my sh*t and it angered me to read when others said they were able to do it. I'm knocking on wood and hoping you all find the right balance that works for you.

Strength to everybody and thanks for posting - always helpful.
 
Agent99 said:
Good afternoon! I've been on Humira for almost 4 yrs and just started flaring. The doc has scheduled me for a new blood test (Prometheus Anser ADA) that is supposed to tell if I have developed the antibodies to Humira and what the levels of Humira are in my body (or something like that). If the results come back that the Humira is no longer effective, I need to start either Cimzia or Remicade.

How long has Humira lasted for you? I'm kind of bummed and really hating this flare.
Click to expand...


Agent99, I'd ask your doctor about MTX/methotrexate. It helps with the antibodies and makes Humira ( I think 30%) more effective.
 
My Mayo doctor has me on 25mg of 6-MP to help my body not develop anti-bodies to the Humira. Cutting edge protocol from Mayo???

Agent99, I hope you are feeling better! Flares suck!

I've been in a flare for two years and just started Humira yesterday. Though I had plenty of trepidation, the loading dose was just fine. I let the shots get to room temp and did 2 in the tummy and 2 in the legs. The tummy was easier, less painful. No side effects today! I'm SO grateful and hopeful the Humira will get me into remission. I need to gain back 20lbs.

okmontreal, thanks for posting good news. That was a heck of journey with the dosage. I have been following the Auto Immune Paleo food protocol and I have to say it has really helped me tremendously. I will slowly add foods back in one at a time once my flare symptoms go away, BUT, I will probably stick with no sugar, legumes, beans, nightshades, no grain, seeds or nuts. I just do way way better without those foods and I want to give my plumbing at least two years to repair itself.

Thanks everyone for all the posts. It really helps me to not feel so isolated.
 
Scaryman - How do I post my medication history in my profile like you have it? I find it very helpful to see what others have tried and what works. I'm a bit computer challenged...it's probably really simple, but has alluded me this week when I try to figure it out. :)
 
Michelley said:
Scaryman - How do I post my medication history in my profile like you have it? I find it very helpful to see what others have tried and what works. I'm a bit computer challenged...it's probably really simple, but has alluded me this week when I try to figure it out. :)
Click to expand...

When you click your name at the top right side of the page where your notifications are, click on "about me" then edit there. let me know.
 
It is common to add an immunosuppressant while on Humira either MTX or 6-mp.
This reduces the risk of antibodies forming to the humira.
but increases the risk of t-cell lymphoma for young male children.
it also makes the biologic more effective for some people.
 
Scaryman said:
When you click your name at the top right side of the page where your notifications are, click on "about me" then edit there. let me know.
Click to expand...

I tried this but can only put one line in. How did you get so many lines in yours? is it in Biography?
 
Just got permission from BC Pharmacare to increase Humira to weekly injections. Today will be day 11 since my last injection. Not sure if now I am supposed to take it every Saturday (instead of Tuesday). I see my GI doc on Thursday.

He wants me to have a fecal cal-protectin test too. I had this done about six months ago in his lab for free (he was working on a research grant). Now I have to go to the lab and it costs $110! Not sure if it is covered by my extended health.

Hope weekly Humira works as if it doesn't I don't know what the next step is :(
 
Is the immunosuppressant only added if Humira is not working? Or are they supposed to be given together. My doc only mentioned getting off the Pentasa if I'm doing well ( after my pred wean) on Humira.
 
LodgeLady said:
Is the immunosuppressant only added if Humira is not working? Or are they supposed to be given together. My doc only mentioned getting off the Pentasa if I'm doing well ( after my pred wean) on Humira.
Click to expand...

My GI and Rheumatologist both told me that I have to take methotrexate with the Humira so that I don't develop antibodies to the Humira. I started on Methotrexate alone for almost one year and then the Humira was added 10 months ago. I did decrease the Methotrexate when I started Humira though.

I have been on Salofalk (like Pentasa) for 20 years. I was also told that I could stop it once I was on Metho and then again when I started Humira but so far I have not been able to even decrease it, let alone stop it. Maybe when i"m on weekly Humira I will?? Hopefully you have more luck! :)
 
I have been a member of this site since July, but just got back on it and am I glad I did. I just started Humira October 29th, and have felt like I have no one to talk to. Starting Humira was scary for me since I prefer to try homeopathic versus putting synthetics into my body. However, I will say that once my GI doc talked me into it, it has started to work. I feel better, not 100% yet but more than 2 days can go by and I am not in bed. Some symptoms are still present, but I can live with them.

One question I have, after starting Humira is it normal for joint pain to increase? I have noticed that my back, ankle, elbow, and finger joints started burning, and it feels like I almost feel them swelling. Weird.
 
Sandi Creek said:
I have been a member of this site since July, but just got back on it and am I glad I did. I just started Humira October 29th, and have felt like I have no one to talk to. Starting Humira was scary for me since I prefer to try homeopathic versus putting synthetics into my body. However, I will say that once my GI doc talked me into it, it has started to work. I feel better, not 100% yet but more than 2 days can go by and I am not in bed. Some symptoms are still present, but I can live with them.

One question I have, after starting Humira is it normal for joint pain to increase? I have noticed that my back, ankle, elbow, and finger joints started burning, and it feels like I almost feel them swelling. Weird.
Click to expand...

Sandi-

Yes that is normal, plus the tiredness and the possible skin breaking out, if that skin issues happen then go to CVS and get "hibiclens" it works wonders.
Its imperative that you give Humira at least 6 months to run its course in order to properly grade its effectiveness. I went through hell getting used to it. Over 1 year later, I'm thankfull I stuck with it.
 
Thank you Scaryman, that helps a lot.
I have been off work for 3 years now and would like to get back to work outside of the house. I have been in what I like to call my sporadic flare/remission. Since 2007 when I was dx, I would be fine for a few months, then sick for a few months, fine for a few weeks, sick a few weeks (you get the picture.)

Started 6mp in Feb 2013 along with prednisone for flare, the next flare is when I started the Humira.
 
Sandi Creek said:
Thank you Scaryman, that helps a lot.
I have been off work for 3 years now and would like to get back to work outside of the house. I have been in what I like to call my sporadic flare/remission. Since 2007 when I was dx, I would be fine for a few months, then sick for a few months, fine for a few weeks, sick a few weeks (you get the picture.)

Started 6mp in Feb 2013 along with prednisone for flare, the next flare is when I started the Humira.
Click to expand...


Just do yourself a favor, as your doctor about Mtx (methotrexate) to use with humira. Makes it 30% stronger handling your bodies anti-bodies against Humira. I'd do it even with the warning on the drug, like I am currently. It gives you more bang for each Humira dose. However, it is another immune suppressant.
 
Other than the drug not working, how do you know if your body is producing anti-bodies? How soon would one produce anti-bodies after starting Humira? Everything I am reading on methotrexate suggests it's to use for arthritis.
 
Hi everyone. I am waiting for everything to get ironed out between my insurance and the specialty pharmacy, but should be starting humira any day now. I am really nervous about side effects after my loading doses. Any advice/experiences anyone wants to share with this newbie?
 
LodgeLady said:
Other than the drug not working, how do you know if your body is producing anti-bodies? How soon would one produce anti-bodies after starting Humira? Everything I am reading on methotrexate suggests it's to use for arthritis.
Click to expand...

MTX is used for crohns as well. It's properties reduce antibodies. The human defense system, will reduce humira's effectiveness.
 
kateel said:
Hi everyone. I am waiting for everything to get ironed out between my insurance and the specialty pharmacy, but should be starting humira any day now. I am really nervous about side effects after my loading doses. Any advice/experiences anyone wants to share with this newbie?
Click to expand...

I'd be prepared for tiredness, joint pain and skin breaking out. These are extremes I would read the black label on humira but these are just the extremes. It is the cleanest drug out there biologic wise in my opinion. I wouldn't worry. Look I am extremely hyper sensitive and went through it and don't look back. Remember to commit to giving humira at least 6 months to grade proper effectiveness with it. Yes it's a powerful drug that may pack a punch, but you have to ask yourself you want to do the Crohn's flare and or inflammation and scaring of the intestines thus leading to resection or a not serious drug reaction. That's a question only you can answer.
 
Thanks again for the suggestions. I emailed my doc today, last night I started to get a sore throat and coughing like crazy. Both throat and chest burn, feel as if the cold is really hitting the lungs pretty hard. If I don't hear back from them today, I will go to urgent care for a lung x-ray. I am supposed to be going out of town this weekend and do not want to start on the road sick.
 
Hi everyone,
I was diagnosed with Crohn's in '99 when I was 20. I had two resection surgeries shortly thereafter. My surgeon left an inflamed area alone that he removed about 13 mos. after the first surgery. After the surgeries, I was pretty much symptom free for about 13 years. I'd have a "flare" very very rarely that would only last a few hours. Lots of severe cramping that would eventually subside. Usually because I ate something I shouldn't have.
Anyway, I became complacent and in my mind I was "cured". I usually was able to eat whatever I wanted. For a long time Crohn's was the farthest thing from my mind.
This September, however, I had one of the worst episodes I'd experienced. It landed me in the hospital for a night. Ct scan showed some narrowing at my resection sites, but like before pain and symptoms gone after giving my systems time to rest. Went on a small regimen of prednisone (1st time) and soon felt back to normal.
Well, here I am now writing this from another hospital bed. Thanksgiving was awful. Had a few mild bouts on turkey day and the days after the last of which was really bad and lasted for more than 24 hours (severe cramping, and vomiting). I had a colonoscopy, which gave evidence of more disease at my resection sites.
So, after all that I'll finally get to my point. I'm uneducated on Humira, and only see the severe side effects (which after more of my own investigation realize they rarely occur). I told my gastro, who's great by the way, my feelings and he suggested Imuran. (Even though he and his PA's all said if they were in my situation they'd go with Humira.) Anyway, I've read many of the posts here and now I'm not sure what to do. I've read that Imuran isn't really a great alternative, as it can have similar side affects. I refused it when they brought it to my room from the hospital pharmacy. I'm very interested in what you all think.
Thanks for reading!
 
Hey Minickjr52,
I know exactly what you are going through. Well, maybe not exactly but dang close. The last time i was hospitalized i told the intake nurse that i had been diagnosed with Crohns disease but i didnt think i actually had it! Just a few hours later i had collapsed on the floor from sepsis shock. My intestines were so mangled that i had an intestinal hernia perforate the wall of my intestine! I was completely septic and for lack of a better word.. Dead. Thanks to the unbelievable efforts of several nurses all taking turns giving me what my surgeon said was and i quote "the best CPR i have ever seen" i pulled through. (Obviously! LOL) but i learned a very important lesson... there is a reason my friends don't call me Dr Green! I didnt go to med school. The team of doctors i surround myself with now DID! And although i make sure to ask tons of questions until i understand every bit of anything that is going into my body, i do trust their recommendations. I have been on Humira for about a year and a half. Although my case may differ from yours i have found Humira to be one of the easier medications in terms of side effects. Remicade was disasterous for me! i was rushed to the ER with Heart attack like symptoms that didnt subside for over 2 hours. Very scary! But i hear reactions to Remicade are common. I choose to think about it this way... they have to warn you of every possible side effect a drug could possible have on a person...and yes its kinds scary to read just how many there possibly are... but this does not mean that they will happen or even that it commonly occurs. It is nothing more than a drug company trying to avoid law suits by claiming that we were fair warned of the worst case scenario, should something happen. For me the only negative would be the bone and joint pain i get right around the time im due for an injection. But i have always battled Juvenile Rheumatoid Arthritis on top of everything else, so i dont really know where to draw the line.. is it the JRA acting up or does it have something to do with the medication? Either way, when i consider the other option, which is not to take anything and risk loosing what little bit of working intestine i have left (72cm to be exact) Humira's possible side effects dont seem so big and bad after all. Dont be afraid to ask a thousand questions and make sure you understand the doctors answers. There is no shame in being a well informed patient before agreeing to go on a new medication. Do some research, ask around, and make your choice only when you feel comfortable in your decision. Good luck.. hope you get to feeling better soon :) prayers are with you.
 
I've been on Humira nearly 4 years. I was very leery of it at first but I actually feel better on it. Unfortunatley, I *think* I'm flaring now. I just had a special (new) blood test done that tests whether I've built up any antibodies to the Humira and I haven't, which is good. Off to get a colonoscopy done before the end of the year now to determine why I'm having so much pain. Minickjr52.... Humira (or any drug like it) is a scary venture. All you can do is research and weigh your options. Since you've already had surgery, I think you are at a higher risk of having more surgery (only my opinion), so you'll need to take that into consideration. I've found it to be beneficial and my son (21 yrs old) is also on it after being dx with a severe case of CD last year. I hate it that my young son is on such a medication, but it's either that or he could lose his colon completely. Good luck!
 
Just remember to consider in case you didn't know. When you have surgical resection, this lovely non linear disease COMES BACK.
 
I would consider Agent99's reply of 4 years on Humira a success story. I am hoping I get some longevity in taking Humira.

Question. Does the fatigue that follows right after taking a shot ever go away?
 
Scaryman said:
Just remember to consider in case you didn't know. When you have surgical resection, this lovely non linear disease COMES BACK.
Click to expand...

Scaryman. That is a scary statement. I don't know that I've ever had Crohns symptoms. What I had for a few years was diarrhea while I was taking GERD medicine for 7 years .....they said my vitamin etc levels were low so I weaned myself off it. Suffered severe constipation for a number of years. Then started having bowel blockage like symptoms ending up with a real one thus the resection. No symptoms since. Everything prior to those years fell into irritable bowel diagnoses....crampy responses to "roughage" and stress from time to time. Hope it stays away because I don't know that I will ever opt for the scary medicines. There are a lot of people having luck with the diets and I would resort to that first I think. But never say never...
 
Scaryman said:
MTX is used for crohns as well. It's properties reduce antibodies. The human defense system, will reduce humira's effectiveness.
Click to expand...

It seems that you can develop immunity towards Humira...what's to take after that? Although some docs take a hard hitting approach to Crohns up front, I'm always wondering what happens when it ceases to work. My thoughts are save the heavy hitter for the years when I need it -- which are not now with no Crohns symptoms and a few joint pains that are annoying. Any feedback on that?
 
I understand your logic and have thought about this as well. My Doc is taking a top down hard hit approach. However I have been suffering a long time not mild symptoms. He did not want to start with the other drugs as they can take 3-6 months to start working. I was also prednisone dependent. I really don't know the answer. I'm putting it all in God's hands.
 
I wonder then does it go like this? You take the heavy hitter and you begin to taper off....? It's been my experience that bad things happen when you taper off as in my case with entacort and I developed arthritis. I think there is an important component missing in this process ...like the elephant in the room.....that should be seen, but is still not seen. One day, I'm hoping some really astute scientist will see the elephant. It appears that all our troubles would be resolved if we could fix what's scaring the immune system. For instance, the patient has chronic cough and is not responding to antibiotics and cough medicine....why is the patient constantly coughing? Perhaps we should open her up and take a look. OH wait! It could be the cat litter dust sitting behind her in the next room. (i.e., The Elephant) I'm hoping maybe one day with DNA technology - they can alter the illness causing genes and all these things will go away. :)

I hope you continue to improve with the medication! Wish you the best!
 
I definitely do not want any parts of Methotrexate. I'm going Humira is all I need. Biological ok but not methotrexate. I don't even want to try 6MP
 
mish2575 said:
I've been on it for a couple years. . . no news is good news, right?
Click to expand...

Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
 
Sparkle2012 said:
Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
Click to expand...

I did catch a cold right at the same time I started my 4 shot starter kit. The cold was not due to the Humira. However it took two weeks to get over along with Xopenex nebulizer treatments and an antibiotic all to treat bronchitis/ asthma. Now this just could be me but I have not had a cold get me that sick in a long time.
 
They probably brought your immune system wayyy down with those 4 shots. I have asthma and colds end up bronchial and take FOREVER to get rid of them. I wondered how it worked if you go an infection, can you actually go OFF the Humira so your immune system is restored during those times? I don't know much about it. Just now approaching the matter.
 
Sparkle2012, My docs told me not to go off of the Humira, even if I had a cold or flu. However, they did also say that if it lasted for a bit or got severe, then to come and see them as they have a better idea of how to treat you and your detailed history than a general practitioner would.

Oddly enough, I have gotten less frequent colds and and no flus at all since starting on Humira around a year ago, but it could also be that I quit smoking at the same time and started eating better....so in general took better care of myself....partly because I was scared that I would take longer to heal and because my Crohn's had gotten worse and I had to do something to take control!

Always talk to your doc before deciding to not take the meds, they will better be able to judge if you should or not.
 
Over the weekend I had a bad toothache begin. On Sunday I noticed that my gum above the tooth was swollen, with a very large bump. I called and set up an appointment with the Dentist for yesterday morning.

My Dentist told me that is was an abscess. He drained it and put me on antibiotics. He said this was an infection caused by either bacteria in my mouth or a piece of food caught in the gum. His exact words were "For some reason your immune system is really low. This is something that normally a person has no problem with." I told him about being on Humira for my Crohn's Disease. He thinks the Humira is the reason I got the infection.

Question. My shot was due on Sunday so I decided to wait until I saw the dentist. He cleaned out the infection but I am now on antibiotics. Do you think I should take my Humira dose now or wait and let the antibiotics do their job?
 
Hi Doug, is there a doc or a nurse you could ask? I'm not sure of the answer. I do know that with throat infections etc that I still take my shot. But yours sounds nastier than a standard throat or chest infection.


Sent from my iPhone using Tapatalk
 
Hello,

I recently joined as my diagnosis has moved pretty swiftly. I presented with a perirectal abscess, which was drained in October. I then had fistula surgery on 11/26, at which time the CRS noted two very high anterior fistulas as well as some polyps, which were biopsied. I had a Prometheus blood panel on 12/3, which came back on 12/10 as consistent with Crohn's. I saw the CRS last night, who told me I had Crohn's. He referred me to the, who I saw this morning.

The GI indicated that, while not an absolute, definite diagnosis, clinically, I present with Crohn's considering the findings on surgery and the bloodwork. We scheduled a colonoscopy for 1/9 and they did some more bloodwork today.

GI doctor wants me to go on Humira, hence my post here. He indicated that 70% of the time, the medication is effective in closing fistula. Has anyone had experience with this? I'm pretty fearful of needles so the thought of injecting myself is not high on my list of fun times, but avoiding a second and third surgery would be well worth it. Thanks in advance for any responses.
 
Very frustrated with my doctor right now. I have had bronchitis since last Monday (12/2), I was given an inhaler. A week later and the bronchitis is not getting any better and I was supposed to take my Humira injection tomorrow, but the GI doc is saying not to since it is a immuno-suppressant. I get that I shouldn't take humira if I have certain other symptoms, but it is so frustrating that I am unable to take anything else to help me get over bronchitis (other than the inhaler that is not doing its job), but I really feel like I am just dangling by my doctors puppet strings. I do not want to go back into another flare up (just starting to come out of this last one with humira.) I am ready to fire this doctor and find me a new one.

Thanks for listening to me vent.
 
Sandi Creek said:
Very frustrated with my doctor right now. I have had bronchitis since last Monday (12/2), I was given an inhaler. A week later and the bronchitis is not getting any better and I was supposed to take my Humira injection tomorrow, but the GI doc is saying not to since it is a immuno-suppressant. I get that I shouldn't take humira if I have certain other symptoms, but it is so frustrating that I am unable to take anything else to help me get over bronchitis (other than the inhaler that is not doing its job), but I really feel like I am just dangling by my doctors puppet strings. I do not want to go back into another flare up (just starting to come out of this last one with humira.) I am ready to fire this doctor and find me a new one.

Thanks for listening to me vent.
Click to expand...

How far a drive is it from you to Chicago?
 
Scaryman; About 3 hours, a little more than I am willing to drive. Madison/Milwaukee would be a better fit for me.

how did you get my message in your reply to me?
 
Sparkle2012 said:
Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
Click to expand...

I'm certain that it actually helps me by depressing my immune system. Cold symptoms are due to your body fighting the bugs. I think my body (due to humira) doesnt fight as much. I seem to get the colds much less severely than anyone else I know. I've never had a serious infection or any reaction to Humira.

Unfortunately it is not helping my fistulas or hidradenitis (its supposed to help both) so I may ask for the next bilogic during my next GI visit.
 

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