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Crohn's Disease Forum

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Hey, in the last 1 or 2 weeks I have joint pain in both hands (fingers and wrists), how can I know if it's from crohn's or from humira or MX or anything else ? I am a computer technician, I know it's not helping to work on a computer all the day.
 
Hi all!
Just wondering if anyone has experienced allergic reactions etc after having started humira?! I'm very new to humira and am also taking 100mg of azathioprine daily. I was in the hairdressers the other night and took an allergic reaction to the tint. Nothing too serious thankfully but I've been having my hair coloured for yearssss and never had anything like that. As it happens, I take a daily antihistamine, which probably helped but worrying if this persists I'm going to be 29 with grey hair haha help!
 
Was the tint ammonia free? I use ammonia free tints. I'd be all grey if not for hair dye. I take 100 aza as well as humira and 2 antihistamines per day. Sometimes it's a little itchy after tint. But not bad.
 
Hi, just discovered this forum looking for Humira information, because I'll be probably taking it in two weeks or so. Hope everything goes well.

I heard Humira it's really expensive, I'm from Spain, so I won't have to pay anything because the public health care takes care of it, but I'm just curious to know how much it would cost.

Thank you.
 
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In Canada my two shots can vary from $1537 to $1767.00 (depending on where you get it filled) and I have to get them every two weeks as I inject weekly, but still the cost is way less than yours in the States (sorry)
 
WHAT? humira in Greece costs around 700 euros per shot. Thats like 800 dollars. It is still insanelly expensive for Greece and universal healthcare covers the patients but still its WAY cheaper.
I dont get it Humira is being distributed by Abbott (abbvie) world wide how can it have such a huge price gap?
 
more information

They have programs you can get on to help you with paying for it.

( The Ambassador Program ) They help you pay what your insurance doesn't

You get a nurse that will help you with your injections if you need her. Your doctor should have all this information.
 
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Does anyone else get sleep deprivation by day 3/4 after the shot? I am so tired the first 2-3 days, and then suddenly I am up til 1:30 in the morning, my mind running crazy and I'm beyond exhausted and can't sleep! Grr!! 3rd injection tomorrow night.. down to my normal single dose! Am I the only one that secretly enjoys the pain of the burn? I didn't think I would say that... I dread it a little bit but that pain makes me feel tough (injecting in my leg... not my stomach, I'm a baby there...)... and I found my left leg doesn't bruise, but my right leg does... very strange! Or maybe the first injection bruised me but got pro by the second one... hard to tell now that i'm down to one.
Rant over.
 
Sea glass,
If I sleep 3 or 4 hours a night, im doing good. Being you can only take Tylenol, I would suggest 1 Tylenol Simply Sleep, to help. Its gentle on the stomach and non-habit forming. I will take them every so often but every night due to I already take so many pills, I dont want to add to the list. I agree on the belly injection, I cant bring myself to do them either. After the burn in the leg, I would rather not have it in my belly.

Hope all goes well.
 
Im so glad there is a Forum to talk to other people with the same issues! So I just started Humira last week. I feel sooooo exhausted and nausea. I am a really active person. I run, lift weights, play roller derby, and surf. I am usually ok just on certain days I have to be real close to a bathroom or I have to wait until I feel a little better then go to gym. Since last week I cant keep up with my routine. Its making me super depressed. I have to be active everyday. Does this get better? I hope its just because it was a big dose. If this makes me feel worse than I am getting off it right away. Sounds like its different for everyone how long it takes to work. If its two months and I still feel like this Im getting off. I cant live without being active:(
 
UCDerbyGirl:

Everyone is different. Some people feel better in a week. Some people longer, and some people it dont help at all. I have been on Humira for 3 months with minimal relief. My humira nurse is looking into if I dont feel any better by the end of the month, talking with my GI to stop it. Not worth the risk. Dont get me wrong, I do feel alittle better, but with the persistent symptoms I have, I feel its not worth the possibility of life threatening side effects.

On the note of activities: This disease is life altering for some people. You cant eat the same, or your body doesn't digest the same. I myself used to be active due to my job, offshore crane mechanic. But I have only worked under 2 weeks since November. It is depressing, but thats when you pull up your boot straps and not let this disease shape you. I learned there is not an ounce of dignity with this disease. I am always having some one looking and inspecting my back side. I sometimes have to run to the bathroom in public. I often have to drive like a mad man to get back home and pray I dont crap myself in the car first. But if it dont work out, and there will be accidents, Clean up and go on about your day.

If you let it control you, that's exactly what it will do. Hope all goes well and Keep your head up.
 
UCDerbyGirl,

I noticed huge fatigue with my daughter during the loading doses. By about her 2nd regular dose it was much, much better.

You may just need to give it time. Do what you can, but rest when you need to rest.
 
I make sure I take lots of Vitamin D (liquid form) and I have more energy than I would otherwise.. I get my levels tested at least 4 times a year and I'm usually below, even with 8000iu! The loading dose wiped me out too a month ago and I slept most of the next day... the following 2 were much better, less tired! Give it time, don't feel too lost!


UCDerbyGirl said:
Im so glad there is a Forum to talk to other people with the same issues! So I just started Humira last week. I feel sooooo exhausted and nausea. I am a really active person. I run, lift weights, play roller derby, and surf. I am usually ok just on certain days I have to be real close to a bathroom or I have to wait until I feel a little better then go to gym. Since last week I cant keep up with my routine. Its making me super depressed. I have to be active everyday. Does this get better? I hope its just because it was a big dose. If this makes me feel worse than I am getting off it right away. Sounds like its different for everyone how long it takes to work. If its two months and I still feel like this Im getting off. I cant live without being active:(
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I actually prefer not the flab... straight into my leg, midway down... it's different for everyone... I think I am just more sensitive in my belly. pre-icing helps for sure though!

SunshineSam said:
would you all agree it hurts less to admin in an area that is a bit more flabby?
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UCDerbyGirl said:
Thanks all! As you know its just sooooo frustrating. I just want to feel normal again!
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I have been on Humira for coming on 5 years now. The fatigue will get better after the loading doses. One thing I have done to help with that is changed the time I take my injection. I now take it in the evening. Then I go to bed and sleep it off. By morning I am fine, energy wise.
 
:thumbdown:

Well.. I don't think I will stay on humira :(
I have a flare-ups now

I've been 4 months on Humira
It gave me 1 month symptom free but the last 2 months wasn't very good and now it's clearly a flare-ups.

I had already contacted my GI last month, and a MRI is scheduled in 2 weeks.

I've read that for 1/3 of people, Humira won't work because of antibodies that form in the first 28 weeks. I don't know if it's my case but it sucks and I don't feel that Humira is helping me :(

I had symptoms in 16 of my last 20 months (including a surgery)
I'm so tired of this **** :frown:
 
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
 
edentenley said:
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
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Maybe you are hitting some blood vessel? Or you need to wash your hands and sterilize the area better before injecting? Do you inject always at the same spot? Try to change spots every week (like left/right side of belly or left right leg etc)
 
edentenley said:
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
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do you pinch the skin? My first shot, I pinched the skin and the injection site welted up. Now I just put pressure straight down without pinching. Now the only the only mark is the needle mark. Definitely worth talking with the humira nurse and your doctor about.
 
I had a friend walk me through my first time over the phone and he warned me don't pinch the spot... and I haven't, and dont want to imagine how much worse it is to pinch... I hit a blood vein last night.. got a little blood blister but other than that, no issues.

POTTYTIME! said:
do you pinch the skin? My first shot, I pinched the skin and the injection site welted up. Now I just put pressure straight down without pinching. Now the only the only mark is the needle mark. Definitely worth talking with the humira nurse and your doctor about.
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Its not a blister or blood blister, its a reaction. Its red and raised and itchy, like a really bad/intense mosquito bite.

Yes, of course I wash my hands before hand, and I also sterilize the area with the alcohol swab that comes with each pen. I also rotate sites every time I give it.

I have an appointment with my gastroenterologist in two weeks, I will be sure to ask him.
 
I have been on Humira for about 2 and a half years. I get the raised reddened area at the injection site every time. Lasts about 3 days for me. Every shot everywhere I give it burns like hell but doesn't last long. I let it sit out about 15 mins, use ice to the area before the injection and make sure the alcohol from cleaning the site dries prior to injection. But like I said, still hurts. Anyone know long term affects of Humira?
 
So I'm in the states and my insurance pays all but $60 a month and then I signed up for the copay assistance program. I only pay $5 a month for 2 shots as long as I have insurance
 
I have only been on Humira for a few months. Only know what I have read on the long term side effect. My doctor assured me that side effects are slim. I take my shot out of the fridge " hours " before shot time. My humira nurse informed me they was working on a new formula so it wouldn't burn. Will see what happens with that.
 
So I have been on Humira for crohns since December 2014. It has lowered my resistance to colds and stuff and have one now. It seems like I feel like I am getting sick and sometimes it passes after 2 days.. this one has been over a week.

Question I have is I am on antibiotics for the possible bronchitis infection that my dad had when he got this. It made a mess of my stomach in two days so I stopped it and actually missed a Humira injection then cause I cant take it when I am sick with the cold thing, right? So I have been off the antibiotics for 2 days and stomach is still kind of IBS coliitis/gerd like. I am eating rice and crackers and chicken soup. Thinking my stomach would be better if i DID inject the Humira tomorrow vs waiting for the cold cough thing to dry out... stomach has not been this bad in a very long time.. so it could only help?

Will call Gastro dr tomorrow but curious about experience?
 
I think you should call the Humira nurse before you skip any injections at all. I don't know if just having a cold would have them ask you to skip it. Bronchitis...I could see that. So, now you have untreated bronchitis?

You could probably get a Humira nurse on the phone right now. Then you could also talk to the GI tomorrow. 3 heads are better than one.
 
Pilgrim said:
I think you should call the Humira nurse before you skip any injections at all. I don't know if just having a cold would have them ask you to skip it. Bronchitis...I could see that. So, now you have untreated bronchitis?

You could probably get a Humira nurse on the phone right now. Then you could also talk to the GI tomorrow. 3 heads are better than one.
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Pilgrim, thanks.. I never even thought about the Humira nurse.... I will check that out. My Dad had cold/cough/bronchitis. He went on antibiotics and it tooks two weeks to get better. My Mom got the cold/cough last Monday, I got it Tuesday. The cough stage has become more like a "bark"sound vs cough.. not sure if it's bronchitis or an infection, dr was treating me proactively as I am in close contact with my folks who I am a caregiver for..

Regardless, I took antibiotics for two days and it tore up my stomach... so I stopped and Dr gave me new meds but havent started. Told her I need to wait for stomach to get better and revisit.

The Humira I think would straighten out the stomach issues quickly,
but I have mucus and the occassional bark cough thing.. so yeah, toss up.

Previous infection I had, Gastro dr said if I had a few days of antibiotics in me I could take the injection.

I will call the Humira nurse tonite.. THANK YOU for that suggestion!:wink:
 
POTTYTIME! said:
UCDerbyGirl:

Everyone is different. Some people feel better in a week. Some people longer, and some people it dont help at all. I have been on Humira for 3 months with minimal relief. My humira nurse is looking into if I dont feel any better by the end of the month, talking with my GI to stop it. Not worth the risk. Dont get me wrong, I do feel alittle better, but with the persistent symptoms I have, I feel its not worth the possibility of life threatening side effects.

On the note of activities: This disease is life altering for some people. You cant eat the same, or your body doesn't digest the same. I myself used to be active due to my job, offshore crane mechanic. But I have only worked under 2 weeks since November. It is depressing, but thats when you pull up your boot straps and not let this disease shape you. I learned there is not an ounce of dignity with this disease. I am always having some one looking and inspecting my back side. I sometimes have to run to the bathroom in public. I often have to drive like a mad man to get back home and pray I dont crap myself in the car first. But if it dont work out, and there will be accidents, Clean up and go on about your day.

If you let it control you, that's exactly what it will do. Hope all goes well and Keep your head up.
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Oh MY...Pottytime!!! I laughed the entire time reading your post :) because I know exactly what you mean! I have been on Humira for 3 years, and it took about 6 months for the drug to begin to help me. I have had Crohns for about 12 years, surgery 3.5 years ago....and truly this post was the best explained how this works....Cudos to you!! You said it all so well :)
 
ScubaWoo said:
Oh MY...Pottytime!!! I laughed the entire time reading your post :) because I know exactly what you mean! I have been on Humira for 3 years, and it took about 6 months for the drug to begin to help me. I have had Crohns for about 12 years, surgery 3.5 years ago....and truly this post was the best explained how this works....Cudos to you!! You said it all so well :)
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Thank you. I try not to beat around the bush. I guess all of my doctors have rubbed off on me with their poor bedside manner. As said before, when you talk about your bathroom habits to anyone and show you back side to everyone, hard not to take it in stride after that. This disease sux. I can only give my insite, and opinions.


My GI's opinion is humira injections are 50/50 at working.
 
Hi all,

I am waiting for my first round of Humira to arrive in the mail. Thanks for all of the tips and suggestions. I'm nervous (like all of you), but will keep reading to gain some backbone!
 
My little one (4 yrs old) started counting to work her way through the injections. She did an amazing job this week! It really helped her pain perception. She got to six and no real crying.

For an adult I might try counting backwards by 3's from 100 or something like that. I was so proud of her - and it really helped!
 
Pilgrim said:
My little one (4 yrs old) started counting to work her way through the injections. She did an amazing job this week! It really helped her pain perception. She got to six and no real crying.

For an adult I might try counting backwards by 3's from 100 or something like that. I was so proud of her - and it really helped!
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Glade to hear that. I hate taking one. The counting down works for me. I just do the 3, 2, 1 about 10 times before I get the nerve to bush the red button.
 
What do you guys do with all the ice packs and coolers? I have kept a few of the ice packs but I feel wasteful throwing away all of those coolers
 
The coolers are too small to be good for much else unfortunately. The only thing I could think of was if I needed to keep some popsicles frozen for camping or something.

We started tossing them, but I feel bad too.
 
I started humira 2 weeks ago, yesterday I had my second dose. I don't really feel it that painful, I was scared for all the comments I read on the internet, but it's just like a pinch for a few seconds and that's it. I guess it might depend on the person but I'm skinny and dont have much fat to inject it and still it's ok.
 
MBO said:
I started humira 2 weeks ago, yesterday I had my second dose. I don't really feel it that painful, I was scared for all the comments I read on the internet, but it's just like a pinch for a few seconds and that's it. I guess it might depend on the person but I'm skinny and dont have much fat to inject it and still it's ok.
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:dusty: That's wonderful! I hope healing comes quickly.
 
Hi,
I'm not on Humira, but a friend is. In January 2015, she was diagnosed with Non-Hodgkins Lymphoma. She was 22, now 23 years old. The Doctors believe that the Humira caused the cancer as it is a listed side-effect. She is having daily Chemotherapy and this 2 month stint of Chemo will be followed by a stint of Radiotherapy, followed by more Chemo and so on. They say she will be receiving treatment for 2 years.
Has anyone else heard of Humira causing Non-Hodgkins Lymphoma and if you have, did they survive?
Sorry for the depressing post. Thanks for your help.
 
I believe it is listed on the packaging as a possible side effect, unfortunately. We all hope it won't happen. I'm so sorry it happened to your friend. I hope she gets through it and is ok in the end. :(
 
Thank you. It seems seems so unfair that drugs which are supposed to help us can actually make our lives worse. I was prescribed Prednisolone and it gave me DVT. Again it's a listed side-effect that you never really think you would get.
 
Its soooo scary when the side effects they list are scarier than what you already have. When you are in so much pain and your doctor is telling you "OH its safe you will be fine. I really think this will work." You are trusting them. If this happens to me I will be devastated! I feel awful for your friend. Its such a hard choice to take something when you hear this. Did I make the right decision? Doctors know we are trusting them to help us not hurt us. I just don't understand a side effect this BIG like Cancer...I'm scared for me and us all since the first needle I put in....did I make the right decision to trust my doctor?
 
UCDerbyGirl said:
Its soooo scary when the side effects they list are scarier than what you already have. When you are in so much pain and your doctor is telling you "OH its safe you will be fine. I really think this will work." You are trusting them. If this happens to me I will be devastated! I feel awful for your friend. Its such a hard choice to take something when you hear this. Did I make the right decision? Doctors know we are trusting them to help us not hurt us. I just don't understand a side effect this BIG like Cancer...I'm scared for me and us all since the first needle I put in....did I make the right decision to trust my doctor?
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Funny u mention trusting the doctors. The last time I was at my GI, there were a lady in the office saying she was going to talk to her lawyer about the meds the doc prescribed her. Their defense, " It is YOUR RESPONSIBILITY to check the side effects before you take it"! My GI gave me the same story about how the chances was like 1 in 450,000 I would get anything. I only have only chatted with a alittle over 100 people in here and now know one with bad side effects from humira. I would say he was wrong.

Im sorry to hear about what yall are going through. Keep praying and taking one day at a time.
 
It is scary, but I don't know what the alternative is. I'm sure you've made the right decision and I'm sorry to have made you scared.

Very interesting to hear that the Doctors wipe their hands of all responsibility though. I've often felt that they don't look at our medical histories enough before they start to prescribe things. Maybe they should do some tests to find out if we're more susceptible to developing complications than other people? Simple tests would have shown that I was more likely to get DVT than other people, but DVT was never even mentioned to me (not that I knew I was a higher risk than others at the time). Many Doctors still refuse to believe that the Prednisolone caused the blood clot, but it's happened twice now - both times with symptoms starting a few days after taking it. I refuse to touch the stuff now. It limits my treatment and means the flare continues for longer, but I'm not risking my life knowingly.

Don't worry about the Humira - we all have enough to worry about. The chances are small, but at least you know that there is a chance, so you'll be more aware if you start to feel ill.

Good luck, everyone.
 
Unfortunately, there doesn't seem to be a medicine that doesn't have some risk of very serious side effects when it comes to Crohn's. We're all in a sort of "if this is the cure, I'd hate to see the disease" situation -- except we've all seen the disease. So I think the doctors kind of have to wipe their hands of it. What are they going to do, not treat our Crohn's until a new side effect-free medicine gets invented? It sucks, I know, but there's not much we can do about it.
 
SunshineSam said:
i honestly feel like im breaking apart. starting week three on Humira, 25mg of predanazone (i reduced because i couldnt take the 40mg anylonger and my medical major friend was telling me the horrors of cruchers) when i take the shots i fee l like my bones are glass for a week following, and the site hurts all the way to the next injection.ni one more month i should be seeing results, and maby get off the steroids for good...but for now im 21 and miserable and on a liquid diet to avoid all pain i can...advice?
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Sorry to hear about your pain. I have been on Humira for 4 months now. Minimum results, but little side effects. I would talk with your GI and Humira nurse on your symptoms. Only thing I can say about the prednisone is as long as you are on it, you are going to feel weird. I myself cant take prednisone any more due to AVN in my hips.

Talk with your doctor's. Hope all gets better.
 
so im slowly going back up to 3 squares a day, any advice?
Still weak, Still in pain....been on humara for 6 weeks now, still on predanazone. im sure eatting fully will solve my weakness issues.
 
Have you changed your diet? Im trying to cut out all wheat, oats, etc. Doing better. Not alot of choices though. Alot of rice and fish. Found out alot of salt makes me blow up. The prednisone will blow your belly up also. I only ate one meal a day while on prednisone.
 
POTTYTIME! said:
Sorry to hear about your pain. I have been on Humira for 4 months now. Minimum results, but little side effects.

Its so strange, its been a bit over 24hours since my recent shot and my lower abdomen hurts very badly, like glass i believe ive stated in other posts. idk jjust dont feel like myself anymore, though that makes since seeing as my genetic makeup is being altered by these shots. The new pain is just so scary intense, i worry i might rip something in there and not know.
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SunshineSam said:
POTTYTIME! said:
Sorry to hear about your pain. I have been on Humira for 4 months now. Minimum results, but little side effects.

Its so strange, its been a bit over 24hours since my recent shot and my lower abdomen hurts very badly, like glass i believe ive stated in other posts. idk jjust dont feel like myself anymore, though that makes since seeing as my genetic makeup is being altered by these shots. The new pain is just so scary intense, i worry i might rip something in there and not know.[/QUOTE

I felt like that while on prednisone. Felt like I had a blockage or had appendicitis. After I got off the prednisone it got better. Still cramp like someone kicked me in the belly. Still have 5+ BMs a day. Still working on meds that will work.
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so my doc said that my recent issues with nose bleeds, double vision and other issues are due to my taking my shot i my upper arm last week....any ideas where to take the shot at guys? i cant do my stomach due to the *glass* feeling that lingers for the full two weeks till the next shot and then again....leg hurts so bad but if thats my only option then, i guess, ill do it...
 
SunshineSam said:
so my doc said that my recent issues with nose bleeds, double vision and other issues are due to my taking my shot i my upper arm last week....any ideas where to take the shot at guys? i cant do my stomach due to the *glass* feeling that lingers for the full two weeks till the next shot and then again....leg hurts so bad but if thats my only option then, i guess, ill do it...
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Leg is the only option for me. Hurts like hell but I dont think I would like that pain in my belly
 
Sunshine Sam
I always did my leg for shots. Do you take the pens out of fridge for at least thirty minutes and ice the area first?
 
I took the pens for two years, and just switched to the syringe . I will never go back to the pens. Always hurt and about every third injection I would have a pretty bad bruise about the size of a quarter that would last two weeks. With the syringe, I would say the pain is 1/4 that of the pen. You do have to inject the drug slowly but I would rather do it at my pace. I always felt the pen injected the drug to fast.
 
I've also switched to the syringes rather than the pens and like Kurtflies I won't go back, much less unpleasant this way. It still hurts but you have more control which makes a big difference.
This is my 4th month of Humira now and I think it may finally be working. I still have to take psyllium to bulk up the D but there's less urgency. Still not as good as it was the first 4 weeks but definitely an improvement.
 
Whats "good enough". I have the "D" once or twice a week. I don't think I want to change at this point. There are drugs that they add to Humira. Quite common. Are you taking anything with the Humira?
 
kurtflies12 said:
Whats "good enough". I have the "D" once or twice a week. I don't think I want to change at this point. There are drugs that they add to Humira. Quite common. Are you taking anything with the Humira?
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I have 3 to 10 BM's a day. I also take Lomotil to no avail. The Humira didnt heel my fistula and im 3 weeks post op. Still bleeding like a stuck hog on some days due to the excessive bathroom trips. Food only stays with me anywhere from 2 minutes to maybe a few hours till im knocking people out of the way to get to the pot. Now I have the crohn's related arthritis in my spine.

The " good enough" is referring to the humira injections heeled my ileum enough so I didn't need part of my intestines removed.
 
POTTYTIME! said:
I have 3 to 10 BM's a day. I also take Lomotil to no avail. The Humira didnt heel my fistula and im 3 weeks post op. Still bleeding like a stuck hog on some days due to the excessive bathroom trips. Food only stays with me anywhere from 2 minutes to maybe a few hours till im knocking people out of the way to get to the pot. Now I have the crohn's related arthritis in my spine.

The " good enough" is referring to the humira injections heeled my ileum enough so I didn't need part of my intestines removed.
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I'd say if you are having 10 BM's a day then Humira most definitely is not getting the job done. I myself am on it and didn't seem to achieve full remission. I even tried every 7 days and it seemed to just make me more tired.... I honestly believe if we are ever going to get quality treatments for this disease there needs to be a dedicated research foundation separate from the CCFA(controlled by pharmaceuticals that profit from us being sick is never going to do the job in my opinion) I hope you feel better soon, I would keep after the doctor
 
I've been on humira for 6 weeks now, and seen results since 4th week. Right now I feel pretty good, no stomach ache and usually go to bathroom once or twice a day.

About the pain when injecting the pen, it's paintful but not that dramatic, in 10-20 seconds it's gone.
 
KHCD5 said:
I'd say if you are having 10 BM's a day then Humira most definitely is not getting the job done. I myself am on it and didn't seem to achieve full remission. I even tried every 7 days and it seemed to just make me more tired.... I honestly believe if we are ever going to get quality treatments for this disease there needs to be a dedicated research foundation separate from the CCFA(controlled by pharmaceuticals that profit from us being sick is never going to do the job in my opinion) I hope you feel better soon, I would keep after the doctor
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Its also the insurance companies. I took pentasa knowing I had severe crohn's disease, my doctor even told me that it probably wouldn't work. Had to be on it for a while because Blue Cross wouldn't approve the humira injections until I did. So I wasted time due to insurance. After 2 weeks on pentasa I made him apply for the humira. I told him, this is my body, and I need a doctor that will look after me, not the insurance companies. I have been on Humira almost 6 months now but I still take 4000 mg of pentasa to make everyone else happy.

The good thing is, my Humira nurse is the one that told me to talk with my doctor, due to the lack of results. My colorectal surgeon suggested cimza or remicade. Dont see my GI untill late next month.
 
I'm due to start Humira in a couple of weeks once my test results come back. I'm nervous about it, but I know the pain will only be 10-20 seconds, so I can live with that.

Has anyone had the blood thinning injection when staying in hospital? That was a horrible burning sensation for about 20 seconds after. Just wondering if it's the same pain?
 
The insurance companies have a standard protocol for drug issuance . You have to start with the most common (inexpensive) and progress to the more effective ones over time. That's the way it worked for me. I guess I'm ok with that but I had to stay on one that was not helping for longer than I wanted to. My GI got right on it when I finally told him so it's really my fault for not saying something sooner. Us men may try to stick with a drug longer than we should. In the future I'm going to ask "how long before I can see results" so I can get the Dr. involved a little sooner.
 
I was on Humira for over a year and while I didn't have any major flares, I think its a total pharmaceutical company scam. Don't blame your doctors because they are only taught the medications that may work-no guarantee. While humira may work well for some people, it definitely isn't for everyone.
I suggest going toward dietary treatment-the stuff they put in Humira is so bad and the cost (on your body) is definitely greater than the benefit most people see. I started the Specific Carbohydrate Diet (modified version to fit my own needs/food sensitivities) and got off humira 1month later and have never felt better. It took me from having moderate/severe crohns (with humira) to mild with barely any symptoms. Message me if your curious about it and id be happy to explain more! If I can do it in college, anyone can :)
 
ConfusedCrohny said:
I was on Humira for over a year and while I didn't have any major flares, I think its a total pharmaceutical company scam. Don't blame your doctors because they are only taught the medications that may work-no guarantee. While humira may work well for some people, it definitely isn't for everyone.
I suggest going toward dietary treatment-the stuff they put in Humira is so bad and the cost (on your body) is definitely greater than the benefit most people see. I started the Specific Carbohydrate Diet (modified version to fit my own needs/food sensitivities) and got off humira 1month later and have never felt better. It took me from having moderate/severe crohns (with humira) to mild with barely any symptoms. Message me if your curious about it and id be happy to explain more! If I can do it in college, anyone can :)
Click to expand...

Honestly I think you are playing with fire going medication free. How long have you been medication free? I think it can be possible in some cases but in a sense you are more susceptible to relapses of disease and you will not have anything to prevent it from happening.

I agree with everything you said about Humira but medication free is also another story. I went off medication completely and like you felt the best I have felt in awhile but 3 months later I had one of the worst flares of my life. I also ate similarly to the SCD diet...
 
The big issue for me is that allowing your body to flare will cause scare tissue to form and that is not what you want ever to happen. The more times that happens the closer you are to a surgical event. If I am wrong here please let me know. I only know what I know from what I have been thru, but I have not been thru a section done. I don't feel like the drug companies are the bad guys here. I know they get a bad rap from the media and there pricing is a mystery to me, but I will try what my GI suggest . For a while anyway. I did go drug free (except for H) for 90 days and when I was done my BP was back to normal and so was my blood work. I also think that some drugs fight one another and make it hard to figure out what is happening, which is why I did the 90 days. And I had my Dr's approval also. I remember going they the big "D" for 8 days and during that time I had a BM every 15 to 20 mins. I watched my body start disappearing before my eyes. Went from 175 to 155. I never want to do that again. And I know I have a mild case compared to many here.
 
CrohnieCo said:
I'm due to start Humira in a couple of weeks once my test results come back. I'm nervous about it, but I know the pain will only be 10-20 seconds, so I can live with that.

Has anyone had the blood thinning injection when staying in hospital? That was a horrible burning sensation for about 20 seconds after. Just wondering if it's the same pain?
Click to expand...

I had those injections and I can say from my experience the humira pen is the same feeling when injecting as the blood thinner but doesn't hurt after, just a little sore. I was really anxious about the pens but after its done I forget I even had it
 
Im new to this forum but have crohns and was offered humira.I turned it own because of the list of side affects. My crohns oesnt seem that bad at the moment except for occasional cramps and nausea episodes that seem to be when Ive eaten something that doesn't agree with me or just over done it. I also get Diarhoea all the time. What does humira do for you,maybe I made the wrong deision. cheers
 
If you can say "my Crohn's is not that bad" you may not need it. But you paid for your doctors advice, so I would think twice.
 
For myself, I have severe Crohn's Disease, been on Humira for around 5 months now, but still have 3 to 10 BM's a day. Also just had fistula surgery 3 weeks ago that the humira injections didn't help. But it did keep me from having some of my small intestine cut out. Guess thats worth all the bathroom trips everyday in itself. Although I am going back to my GI at the end of next month to get the meds changed. Either go to injections every week or go over to remicade or cimza that my colorectal surgeon suggested.
 
I started Humira a little less than 3 years ago for moderate-severe Crohn's, a shot every two weeks. It worked better than Remicade, which was wearing off too fast, and allowed me to finally get off of prednisone. I never achieved full remission, but but sometimes I felt almost normal. Less energy than pre-Crohn's, 3-4 BMs per day, but urgent diarrhea was pretty rare. I still had to use some care with what I ate, but a lot of options remained open to me. Some sort of biologic is arguably essential for me--Remicade seems to be what saved my colon when I was in the hospital; if that hadn't worked, I probably would've needed a colectomy.

I think the Humira may have opened me up to migraines, but I've heard people say that they've countered headache problems by drinking a large glass of water with their shot. Although I already drink a lot of water, I've tried doing the same, and I think it may be helping.

About 9 months ago, I started a slow decline, symptoms worsening, to the point that in December it looked like I was having another flare (confirmed in January with colonoscopy). Despite prednisone it worsened to the point that I had to spend a week in the hospital in March. I'm now on Humira weekly and still slowly tapering back off of the prednisone. It seems like my Crohn's has gotten worse. Maybe I'll have to look at a different med to see if the Humira is losing its effectiveness with me, but it was definitely helpful for at least a year and a half.
 
on week 8 of Humira and all my scans/colonoscopy/mre have come back with beautiful results. My issues meow are just getting off the Pred...sadly. EFK If you say your not that bad then trust me, stay away from the meds if you can, work with enzymes and anti inflam spices such as ginger and turmeric. I started 2015 drug free and was realistically ok till i had to do prep for my second colonoscopy, then when i was placed in icu i feel the steroids and other such harsh drugs really did a number on my inners and made me dependent.

21 American,
UC Di in 2014, re di in 2015 Crohn,
Asacol HD, Methotrexate, Pred 40mg, Humira,
Currently free and clear and tapering pred 15mg
 
SunshineSam said:
on week 8 of Humira and all my scans/colonoscopy/mre have come back with beautiful results. My issues meow are just getting off the Pred...sadly. EFK If you say your not that bad then trust me, stay away from the meds if you can, work with enzymes and anti inflam spices such as ginger and turmeric. I started 2015 drug free and was realistically ok till i had to do prep for my second colonoscopy, then when i was placed in icu i feel the steroids and other such harsh drugs really did a number on my inners and made me dependent.

21 American,
UC Di in 2014, re di in 2015 Crohn,
Asacol HD, Methotrexate, Pred 40mg, Humira,
Currently free and clear and tapering pred 15mg
Click to expand...


great that the humira is working for you , im on my 3rd week and just took my second doses , i was just finished with pred before i went on the humira and i was just starting to flare , the first humira shots seems to have stopped that in its track .
 
Something I was thinking about today--I seem to have had less trouble with environmental allergies since the start of the Crohn's and the Humira. It seems like a big of a long-shot, but allergies are an inappropriate immune response, so maybe there's a connection. Specifically I've had less trouble with my sinuses from allergies. Anybody else have that change for the better?
 
actually my alergies got worse, though my doc says a) i shouldnt have taken it in the arm (saying it caused the nose bleeds) b) i live with a 4yr old lol so colds always and forever.


Humira week 8.5
Pred tapered to 10mg and holding
In the middle of Cushers and Adrenial Falure....kill me
 
at first it really helped my prosisis but then it just stopped =/ im hoping getting off dreaded pred will give me a better view of what the pen does on its own.
 
Elektrikhd said:
Something I was thinking about today--I seem to have had less trouble with environmental allergies since the start of the Crohn's and the Humira. It seems like a big of a long-shot, but allergies are an inappropriate immune response, so maybe there's a connection. Specifically I've had less trouble with my sinuses from allergies. Anybody else have that change for the better?
Click to expand...


Yes! My doctor said that Humira can make allergies less severe. Although my seasonal allergies are about the same, I've noticed I have less skin reactions to things that used to bother me like cleaning chemicals, hair dye, and nickel.

But today I'm broken out in contact dermatitis for no reason, so maybe that is iffy?
 
After I had my resection in October 2010 I noticed something. My seasonal allergies went from very severe to ...... what allergies?. I did not start Humira until June 2011 so I really don't think Humira had much to do with it. To this day I do not suffer from allergies anymore.
 
Hi everybody,
I am a mom of a 10yold boy who needs to start taking Humira. I am terrified and scared. Read all the side effects and learned how painful the Humira is.
Please help, what should I do to lessen the injection pain? I am afraid our life will become a nightmare. :((( It is so new to us so I cry when I write this...
 
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Ania said:
Hi everybody,
I am a mom of a 10yold boy who needs to start taking Humira. I am terrified and scared. Read all the side effects and learned how painful the Humira is.
Please help, what should I do to lessen the injection pain? I am afraid our life will become a nightmare. :((( It is so new to us so I cry when I wright this...
Click to expand...

Im sorry to hear about your son and this awful disease. I have read before from people on here that children does not have as much pain with these injections. I find that when I dont pinch the skin, I dont have injection site redness. I dont think there is anything you can do to ease the burn as that is just the meds. Some people try an ice pack to numb the area. I take my shot out the morning of and inject it at night. Hope it goes good for the little guy, and you too.
 
The side effects list is indeed scary, although that's the case for a lot of medications, too, even some over-the-counter ones. I wish they would list the percentages, because when you dig around and look them up, the scariest of side effects are all less than 1% in occurrence.

I've found as someone else mentioned that if I don't pinch the injection site up too much, it hurts less. I gently squeeze a very wide area of skin, as fleshy/fatty as I can find and and keep a steady but loose hold on it (hang on loosely, but don't let go). This also reduces the bleeding afterward--I rarely bleed in fact. Sometimes I can also just tell that it's going to hurt more for some reason, and on those days, I ice the area first. That helps, too. After I wipe the site with the alcohol pad, I give it as much as a minute to dry so that the needle doesn't carry any alcohol through the skin, another way to make it easier.

I also usually watch something while I'm doing my injection (youtube in my case) to help distract me from it (and keep track of time). If you're using the pens, you don't need to worry about counting to 10 after pressing the button, once the yellow indicator shows in the window, it has injected fully.

When I first did my loading doses with a nurse, I did all of my shots myself, my thinking being that if it really hurt, at least I had already done it myself, so that I'd know I could do it. I'm sure they recommend that kids don't give their own injections, but if not, maybe it would wind up helping? I think it's something that's different for everyone--whether it's easier not knowing exactly when it's coming, having someone tell you when, or being completely in control of it yourself.
 
Thank you for the advices. We will go for the second opinion , however I suspect the diagnosis will be confirmed.

Why the doctors don't try different methods before Humira?
My son has no pain, he has been limping from time to time and I feel his inflammation should be treated in less severe way at first. I am just devastated. I am at work and every time I just think about it, I cry. :(
 
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I understand how patients in pain cope with the Humira , because they feel a relief . I am serving him a pain. I can not get that straight in my head.
 
Ania said:
Thank you for the advices. We will go for the second opinion , however I suspect the diagnosis will be confirmed.

Why the doctors don't try different methods before Humira?
My son has no pain, he has been limping from time to time and I feel his inflammation should be treated in less severe way at first. I am just devastated. I am at work and every time I just think about it, I cry. :(
Click to expand...

Hi Ania

Sorry to hear about your son. I feel so bad when I hear of kids with this disease.

As to why the doctors don't try different methods before a biologic like Humira? There are actually 2 different approaches to therapy for IBD. Some doctors take the bottom up approach, using the medicines with the least side effects first. But more and more GI's are taking the top down approach. That is, trying biologics first in order to get the disease under control. One thing you also might run into is the insurance company forcing the bottom up approach, because the meds are cheaper than the biologics.

Let us know how your second opinion goes.
 
I a very sorry to hear that your 10 year old has Crohn's. I lost my insurance and then of course lost the Humira coverage. But, while I was on it I can tell you that shot week was always a dread, but luckily the pain pretty much goes once the shot is over. I too have my daughter pinch my skin a little, I do suffer from a little bleeding, but I think that is due to the fact that I am so thin and there really isn't much fat to grab. I tried the ice cube thing once and that only made the swelling and soreness last longer for me.

Maybe buy him one of those stress balls that he can squeeze and his favorite treat in the other hand. I have only been living with this for 2 years, and there are still days I want to cry. Keep your chin up, when you and your family see how much it helps him it will help your emotions some too. This is a great support forum to be apart of.
 

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