Humira Club Support Group

Crohn's Disease Forum

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Hey everyone! I just started Humira yesterday and I was SO scared...a nurse came and helped me out and I was able to do all 4 of the first injections! How long did it take for you guys to notice any improvement?
 
Angie's Mom said:
Just an interesting bit of news, the government of Ontario in Canada sent a form to doctors who prescribe Humira letting them know that they will not cover increased doses of Humira because their research indicates that there is no benefit to increasing the dose beyond the 1 injection by weekly. Further more, they sited "unknown side effects" and additional health risks as factoring into their decision.
So, anyone who receives Trillium drug benefits is S.O.L!
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:voodoo:

We've seen a huge difference moving to weekly doses.
 
Pilgrim said:
:voodoo:

We've seen a huge difference moving to weekly doses.
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I think this move is a cop out by the government to avoid doubling their pay out. It sucks and as a result I will probably need to under go surgery instead if just increasing my dose.
Which doctor do you see? I'm being sent to a new doctor at Mt. Sinai in Toronto.
 
We're in NWO so we travel to Manitoba for specialists.

I've heard good things about the specialists at Mt. Sinai. I hope you can work through it. Have you thought about approaching Humira directly to see if they can offer you funding for the added weeks of Humira?
 
Pilgrim said:
We're in NWO so we travel to Manitoba for specialists.

I've heard good things about the specialists at Mt. Sinai. I hope you can work through it. Have you thought about approaching Humira directly to see if they can offer you funding for the added weeks of Humira?
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I have to wait until I meet the surgeon. My current doctor believes that Humira has stopped working for me all together and feels that doubling the dose would be fruitless. To his point, I'm in a full flare and still taking my injections with not so much as even a blip of relief.

I guess I have to wait until my appointment in October!
 
Ania you only need vsl#3 if you have UC or rectal crohns
Not junvenile spondyloarthritis by itself.
Ds has used it for years due to his rectal issues but his crohns behaves like UC in the rectum.
 
Thank you. I was under the impression it helps inflammation in general.

I was also trying to find if inflammation can affect child behavior. K is inattentive at school, and impulsive. Looking if one can be caused by another.
 
If inflammation is causing pain then pain /stiffness can be distracting.
A lot of kids start having pain so young
They don't understand that the pain isn't normal
Or what a pain /stiffness free day would be like
Also having to take meds ( shots c) can be stressful for kids
And some have a harder time expressing this
Most Rheumo departs have a kiddie psychologist in the dept to help the kids talk and deal with the things kids should never have to deal with.

Good luck
 
Dear Forum,
What is your opinion about Humira and flu shot? The flu season is coming and I will have to face that decision. K wasn't always getting the vaccine, but should I now give it to him?
 
Most Gi and Rheumohighly recommend to get the flu shot ( not the mist)
When taking immunosuppresants and/or biologics .
Humira puts you at risk for opportunistic infections ( the bad tag alongs complications with the flu pneumonia etc..)
Kids can and do die from the flu each year without the added risk.

My kiddo will get the flu shot .
His Gi sends us a reminder letter every year.
Ds has asthma and we found out the hard way at age 2.5 that he had asthma when he came down with the flu without a flu shot.
The flu made it nearly impossible for him to breath.
Lots of steroids later ( over a week ) his breathing improved

I actually know of a 5 year old 2-3 years ago
Got the flu and died from pneumonia comolications within a week ( no immunosuppressants either)

So flu shot for the entire family ( herd protection)
Lots of hand washing
And calling Gi and Rheumo with any fever over 100.4 or diffuse body aches .
 
I'm starting Humira this week. I also have to take my methotrexate as well. I thought they would stop that. Anyone else taking methotrexate with Humira? Also does anyone have any side effects from Humira?
 
Ds is on both mtx and humira
Works well together
He gets migraines but they don't correspond to humira injections or mtx
He got those long before he started meds or was dx
 
I already get side effects from the methotrexate nausea, feeling unwell & tiredness. I'm just hoping I don't get anymore side effects or make the ones I already get worse. Think I will have to pick a day to do the injections like I do the methotrexate so it won't interfere with my job.
 
Ang71 said:
I already get side effects from the methotrexate nausea, feeling unwell & tiredness. I'm just hoping I don't get anymore side effects or make the ones I already get worse. Think I will have to pick a day to do the injections like I do the methotrexate so it won't interfere with my job.
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I do my injections at bed time. Make sure you drink lots of water and keep hydrated. As far as side effects that would last through the weekend and keep you from work? I've not had any. I've been on Humira for 14 months now and the only issue I really have itchy skin on my arms and legs because of foliculitis. I had that with Remicade as well.

If you are finding yourself really drained during the day like you are dragging your feet, ask your doctor for a vitamin B12 injection. Because of the nature of this illness we have a hard time absorbing vitamin leaving us weak and deficient.

All the best, I really hope the Humira works well for you.
 
Ania said:
Dear Forum,
What is your opinion about Humira and flu shot? The flu season is coming and I will have to face that decision. K wasn't always getting the vaccine, but should I now give it to him?
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I started taking the flu shot after I was put on Humira. I have not had a case of the flu in the 4 years I have been on Humira. It is worth doing it. Make sure it is the injection and not the mist. The mist is a live vaccine. The injection is a dead vaccine. The live vaccine is much more likely to cause a problem for us that are one Humira and the other biologics.
 
Angie's Mom said:
I do my injections at bed time. Make sure you drink lots of water and keep hydrated. As far as side effects that would last through the weekend and keep you from work? I've not had any. I've been on Humira for 14 months now and the only issue I really have itchy skin on my arms and legs because of foliculitis. I had that with Remicade as well.



If you are finding yourself really drained during the day like you are dragging your feet, ask your doctor for a vitamin B12 injection. Because of the nature of this illness we have a hard time absorbing vitamin leaving us weak and deficient.



All the best, I really hope the Humira works well for you.
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Thanks Angie [emoji2] I already have vitamin B shots every month. I'm going to do the 4 injections Thursday night before bed. The nurse said I could do 2 Thursday & 2 Friday but I'd rather get them over and done with.
 
Any one on weekly humira shots??
Ds holds his own for 7 days
Goes downhill till shot day 10
Then takes two days to recover after humira shot
So only 5 really good days
Docs are considering every 7 days right now
 
:sign0085:Just joined this club on Tuesday. 4 shots in my stomasch. Not too bad. Yesterday stomach cramps all day and today extreme fatigue. Are these common and how long does it last?
 
tcclaims said:
:sign0085:Just joined this club on Tuesday. 4 shots in my stomasch. Not too bad. Yesterday stomach cramps all day and today extreme fatigue. Are these common and how long does it last?
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Hi,

So the fatigue is pretty normal. How long it lasts really depends on your body. The loading doses are a lot of med's to take in so its not surprising that you are tired, after all your body is working out the drugs and trying to heal. As for cramping, I get cramps as a byproduct of the disease not the Humira.

Here's hoping it helps you! Good luck
 
tcclaims said:
:sign0085:Just joined this club on Tuesday. 4 shots in my stomasch. Not too bad. Yesterday stomach cramps all day and today extreme fatigue. Are these common and how long does it last?
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The fatigue is more extreme with the loading doses. You are taking a lot of medicine, so I am not surprised about the fatigue. For me the fatigue got better as things went along with Humira. As for the cramps, I have not heard of Humira causing stomach cramps. It could be from the crohn's disease itself.
 
my little penguin said:
Any one on weekly humira shots??
Ds holds his own for 7 days
Goes downhill till shot day 10
Then takes two days to recover after humira shot
So only 5 really good days
Docs are considering every 7 days right now
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H is on weekly Humira but still ped dose (20mg) she is 50lbs.

She was moved from 14 day dosing in July after a flare. Just got her fcal results back and she went down from 900's at flare in July to 300's this Sept. Based on that and symptoms the weekly dose has worked well for her. No added fatigue or side effects as yet.

Any labs that indicate worsening situation or based on fatigue/joints/symptoms?
 
Pilgrim
Ds last 7 days
His 8 th day after the humira shot
Abdominal pain gets worse , headaches start , ulcers , fatigue and Loss of appetite
Day 9 the flood gates open
Everything hurts - all his arthritis joints, his head, his teeth /gums, ulcers, abdominal pain , no appetite -drinks only formula , uses a tens unit for pain ,
Day 10 - ( shot day) same as above day 9 just a little worse
24 hours later things improve but gets diarrhea as well multiple times a week
48 hours later he is back to normal including appetite

So GI can see the inflammation happening as mini flares every 10 days
Bloodwork is always normal
Thinking of switching to every 7 days to avoid the looping cycle
And keep Ds steady instead
His other systems aren't happy either since his body can't keep up
He has inflammation in his eyes - topical steroid drops
And inflammation in his toes ( dyshirotic ezcema ) so topical steroids..

Lots of stuff going on ...
Complicated kiddo
 
Ania
Thanks
That's why they plan to increase frequency
Just need approval
Days 1-7 he is really good
It's that just after that is the issue
 
Started my Humira Friday night first 4 injections over and done with no side effects thank god. Today I've notice that there is blood in my stools I've never had blood in my stools before. Could this just be the haemorrhoids that I have or the Humira?
 
Ang71 said:
Started my Humira Friday night first 4 injections over and done with no side effects thank god. Today I've notice that there is blood in my stools I've never had blood in my stools before. Could this just be the haemorrhoids that I have or the Humira?
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If you have had no pain or discomfort than hemorrhoids is a likely culprit. Was it bright red? If it happens again I'd let your doctor know, but if it's a one off I'd say it probably was an internal hemorrhoid.
 
After less than 6 months, I have developed antibodies to Remicade and we are switching to Humira. My GI wants me on it ASAP, whenever the shots arrive, however, he said to skip the loading dose and just start with one shot every other week. Anybody else did this? What could the reason be?
 
Ds did this when he starred humira right off remicade
Since he was stable and had anti tnf already in his system
 
I also built up the antibodies and switched from Remicade to Humira..... However, I did do the Humira loading doses. What I found helpful - switching from the Humira Pen to pre filled syringes. In short, this helped eliminate injection site irritations....
 
Napali Coast said:
I also built up the antibodies and switched from Remicade to Humira..... However, I did do the Humira loading doses. What I found helpful - switching from the Humira Pen to pre filled syringes. In short, this helped eliminate injection site irritations....
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So I also built up antibodies to Remicade. I have additionally built up antibodies to Humira. How is the Humira working for you? I'm meeting with a surgeon next week to discuss the next plan of action.
 
Recently been told I will be starting Humira. I am aware of loading dose and the need to stay in Hospital as a day case (UK), however I have been provided with appointments for 3 day cases, each one two weeks apart. I suspect the first appointment will be for the IBD nurses to teach me how to self inject and for the four loading doses to be administered. The next two appointment are a mystery to me.
 
After the first loading doses four pens for adults ( I believe )
Then two weeks later another loading dose of 2 pens
Then finally normal dose ( so maybe a check up )
 
my little penguin said:
After the first loading doses four pens for adults ( I believe )
Then two weeks later another loading dose of 2 pens
Then finally normal dose ( so maybe a check up )
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Thank you 'my little penguin'. Didn't realise there was a second loading dose. I'll find out soon enough but thanks for the information.
 
POTTYTIME! said:
Yes. First is 4 the 2 then the 1 every other week for most people
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Thank you.

Any reason they would want me at the Hospital for all three days? I'm close to St Marks in London so not a problem but I would have thought that after the initial loading dose they would let me get on with it at home.
 
I never had a second round of loading doses. My initial loading doses (4 injections) was done by a nurse in a clinic so they could observe any drug reactions. I was told that anaphylaxis is what they are watching for. The thinking is that any thing that requires immediate medical intervention will occur within the first hour. Now my husband gives me my meds.
 
Angie's Mom said:
So I also built up antibodies to Remicade. I have additionally built up antibodies to Humira. How is the Humira working for you? I'm meeting with a surgeon next week to discuss the next plan of action.
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Hello Angie's Mom,

My Humira injection's seem to be keeping the serious side effects of Crohn's at bay…. However, it is not giving me the same relief as I received in the beginning with Remicade (first 8 months or so)….

After building up the Remicade antibodies - and having my doctor continue/increase my Remicade doses - it was a very very painful time. I am grateful that pain has ended (switched to Humira).

Strangley enough - since developing the Remi antibodies (hopefully not Biologic Antibodies), nose bleeds have been a constant. I was also taking Imuran when on Remicade (stopped Imuran too) which may have contributed to my ongoing/current nose bleeds….

I wish you all the best with your upcoming doctor appointment and that you're able to keep surgery at bay.

God Bless.
 
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tlattin said:
he said to skip the loading dose and just start with one shot every other week. Anybody else did this? What could the reason be?
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tlattin- my son started Humira without a loading dose. I read it is quite common.

I will have our first blood work results next week. So far the doctor called and said , the CRP is 0.032.
I'm assuming it is good?
 
my little penguin said:
No loading dose here either
But for kids they hardly ever do a loading dose due to their weight
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We did loading doses - 80mg then 40mg and her regular dose started at 20mg bi-weekly now at weekly 20mg. She was about 45lbs when we started.
MLP- At what weight did your son get moved to 40mg?
We have heard possibly 30kg (66lbs) for that move. We would go back to biweekly.
 
Pilgrim
DS didn't do a loading dose pilgrim since he was already on remicade and stable .
He was 75-80 lbs at the time .
The maximum weight ( or slightly above ) for the 20 mg syringe
When it didn't work at 20 mg every two weeks after three months
Docs switched him to 40 mg every two weeks
That lasted a year
Then they added mtx and humira every 10 days that was last sept
He is now on 40 mg humira once a week and mtx 12.5 mg once a week at 100 lbs. which 50 lbs over his dx weight 4 years ago .
 
Soooo maybe someone knows the answer to this, I'm supposed to do my Humira tonight but I'm sick, like congested and a pretty bad cold, and I know when I used to do Remicade if I had a cold I had to put the treatment off, but is it the same with Humira? Should I wait until I get better?
 
Call your Gi
With DS he can get his humira when he is sick with a cold as long as he doesn't have a fever or active infection requiring abx .
Each Gi is different so I would call yours
 
My doctors kept increasing my Humira and I guess it did work for 4 years, but when I ended up in the hospital with another blockage and I swallowed the pillcam and it was stuck for 42 days, they sent my blood work to. Prometheus Labs in CA. I had plenty of the drug in my system and I did not produce antibodies to it. It just stopped working! Now I'm trying Entiviyo. Do these meds all work for "just a while"?
 
peluchde said:
My doctors kept increasing my Humira and I guess it did work for 4 years, but when I ended up in the hospital with another blockage and I swallowed the pillcam and it was stuck for 42 days, they sent my blood work to. Prometheus Labs in CA. I had plenty of the drug in my system and I did not produce antibodies to it. It just stopped working! Now I'm trying Entiviyo. Do these meds all work for "just a while"?
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I appear to be in the same boat as you! All of these meds just seemed to stop being effective. In Ontario Canada, they ran out of Entiviyo! They are only giving the drug to people with private insurance for the next few months. In the mean time, my doctor has jacked my Humira up to 2 pens a week to try and get me through until he can get me onto Entiviyo.

Fingers crossed it works for you!
 
I started Humira back in March, so far so good... My fistula and Crohn's are both in remission for the majority.. my fistula hurts once in a while... but I take the Humira shot again and it's gone.
But lately I have been feeling insanely tired... and nauseous! Is this normal to feel daily nausea?? Anyone else experience this? Like I said, I am in remission.. so I'm curious if this is possibly Crohn's related or Humira related...
Can't be pregnant, had a full period spot on the day 2 weeks ago!
I don't like this feeling!
 
Sea Glass said:
I started Humira back in March, so far so good... My fistula and Crohn's are both in remission for the majority.. my fistula hurts once in a while... but I take the Humira shot again and it's gone.
But lately I have been feeling insanely tired... and nauseous! Is this normal to feel daily nausea?? Anyone else experience this? Like I said, I am in remission.. so I'm curious if this is possibly Crohn's related or Humira related...
Can't be pregnant, had a full period spot on the day 2 weeks ago!
I don't like this feeling!
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Hi Sea Glass,

I'm sorry to hear you aren't feeling great. It is possible that you could be having upper gi symptoms. How is your weight? Has it dropped at all? Are your BM's normal? Remember, Crohn's disease can affect any where from your anus to your mouth.
I'd check in with your GI. Ask to have your Humira levels measured, it's a simple blood test done the last possible day before your next injection to see if there is enough in your system.
I hope you get some answers soon and return to good health! :strawberry:
 
Angie's Mom said:
Hi Sea Glass,

I'm sorry to hear you aren't feeling great. It is possible that you could be having upper gi symptoms. How is your weight? Has it dropped at all? Are your BM's normal? Remember, Crohn's disease can affect any where from your anus to your mouth.
I'd check in with your GI. Ask to have your Humira levels measured, it's a simple blood test done the last possible day before your next injection to see if there is enough in your system.
I hope you get some answers soon and return to good health! :strawberry:
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Thanks for your response! I saw my specialist last week with cramp like pains in my left side (felt like the cramps you get while running).. lasted for 2 days.. he felt around both sides to see if there was any tenderness or hardness... nothing... I told him about the nausea etc and lack of sleep but always tired... and he didn't think there was anything to be concerned about. I have been reading many comments about nausea and Crohn's now, just find it strange that it's not associated with a flare up.. maybe it's foods I am eating that are causing it. I hate Crohn's... so different from one person to the next and just so unusual and annoying!
 
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
 
baillargeon said:
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
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I had the total opposite response when I took the 4 loading doses. All the pain went away in my stomach within two days and I felt great for the first time in about 3 yrs. then I got the side effects(don't worry I seem to be the only one that gets the ones that I got). Keep at it because everyone is different and you might do very well with your next shots. Good luck!
 
I got really nauseous and felt sick with my loading dose. I did it on a Friday morning and felt fine till about 4 pm that day then got really tired and the nausea set in and I couldn't eat anything that night and was still sick all the next day. (the Humira people told me this was a common side effect)
I take my 2nd dose of 2 shots (40 mg each this weekend) Just wondering if this is going to make me feel the same way, or since it is only 2 shots maybe I won't feel sick. (again Humira rep said I will probably feel the same for the first 2 months of injections)
has anyone else had these side effects? How long before the shots stop making you sick?

Your input is greatly appreciated.
 
baillargeon said:
I got really nauseous and felt sick with my loading dose. I did it on a Friday morning and felt fine till about 4 pm that day then got really tired and the nausea set in and I couldn't eat anything that night and was still sick all the next day. (the Humira people told me this was a common side effect)
I take my 2nd dose of 2 shots (40 mg each this weekend) Just wondering if this is going to make me feel the same way, or since it is only 2 shots maybe I won't feel sick. (again Humira rep said I will probably feel the same for the first 2 months of injections)
has anyone else had these side effects? How long before the shots stop making you sick?

Your input is greatly appreciated.
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I definitely was sick after my initial dose and after that they suggested that I do it at night so I can just go to bed right after. That seems to help cause I'm able to sleep off the effects, I think I remember having a semi rough day the day after but after going down to one pen each time definitely made the effects lessen significantly. Like I said I would definitely try to do it in the evening if that's possible for you.
 
Thanks that is very helpful. I will take it at night this time so hopefully I can sleep through the nausea. It did make me pretty tired. Thank you so much for your help and I am glad it seems to be working for you
 
DS started his at night as well
To sleep through anything
He didn't do a loading dose since he is a kid
He was tired the day after injections for a while
Since his body was healing
 
Had my first Humira shot two days ago. Due to a miscommunication, we received the syringe and not the pen, I was not amused! But after doing the syringe (which was not so bad but pretty painful) I'm sure the pen will be a breeze.
 
Hi! My name is Dana and I'm so excited I found this group 😊😊 I've been on Humira now for a little over a year. It works great for my Crohn's but I'm having trouble staying well. Over the last six months I've pretty much stayed sick with some type of sinus or upper respiratory infection. I've been on 7 antibiotics in the last few months and nothing has cleared it up. I will feel better for a few days but then it's back. I have an apt with an infectious disease dr and they are going to do some labs and a chest CT. Has anyone else experienced this problem?? I know it lowers our immune system but I've been sick for a long time now.

I'm looking forward to getting to know everyone and so excited about all the support 😊
 
True, but I didn't do it myself, the nurse did and she did it as fast as possible. Also, psychologically the pen is better if you know what I mean :)
 
This is my second no sting injection since I started a year ago and I just had to share. After a year of having my Humira shot sting, I learned to leave the pen out at room temperature for the day. No sting then! Humira can stay out of refrigerator for 14 days and it says this in information package I receive with each shipment. After that though it needs to be tossed. I used to leave it on counter for 30 minutes and that was not long enough. I am thrilled!!
 
orangesunflower said:
This is my second no sting injection since I started a year ago and I just had to share. After a year of having my Humira shot sting, I learned to leave the pen out at room temperature for the day. No sting then! Humira can stay out of refrigerator for 14 days and it says this in information package I receive with each shipment. After that though it needs to be tossed. I used to leave it on counter for 30 minutes and that was not long enough. I am thrilled!!
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I do this too!! I also ice wherever I'm gonna do the shot for a couple minutes before I start and that has made the pain more tolerable or gone completely depending on how long I ice it for
 
We use syringe, keep Humira in room temp. for 6-8h before the injection, ice, and it is painless.

my little penguin- how is DS doing on 7 days injections?

In addition to my son diagnosis, my husband was diagnosed with MS :( 2015 is not the best for us .
 
So far so good with every 7 days
A lot of his other symptoms have drastically decreased
And his appetite increased :)
 
We are repeating MRI in Dec. Then January visit, blood work. Hopefully we will be able to do Humira once a month and see what will happen.
 
Humira dosing is not once a month
The half life of the drug is two short
Standard dosing is once every two weeks
High dose is once a week
They don't move out to once a month at all
:sorry:
If you try to move out further the drug isn't as effective and risk antibodies forming

Hope the MRI shows things are improving
 
baillargeon said:
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
Click to expand...

It does take a few months for Humira to start taking an effect. It has had me in remission for about 4.5 years now. The loading doses are the worst as far as side effects. They most likely will go away over time. If not then there are other options.
 
dmcfarland said:
Hi! My name is Dana and I'm so excited I found this group 😊😊 I've been on Humira now for a little over a year. It works great for my Crohn's but I'm having trouble staying well. Over the last six months I've pretty much stayed sick with some type of sinus or upper respiratory infection. I've been on 7 antibiotics in the last few months and nothing has cleared it up. I will feel better for a few days but then it's back. I have an apt with an infectious disease dr and they are going to do some labs and a chest CT. Has anyone else experienced this problem?? I know it lowers our immune system but I've been sick for a long time now.

I'm looking forward to getting to know everyone and so excited about all the support 😊
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Hey Dana! Have you had your appointment yet with the infectious disease doc? Welcome to the group and I hope you find out something soon!
-Rebecca
 
Hello Everyone!

I am going to be starting Humira in the next few weeks pending drug coverage.

I was Dx in June 2008 with mild Crohn's. I was on Pentasa (4000mg/day) until June 2015, then was moved to Imuran after my Crohn's progressed to be less than moderate, but more than mild. Oh good ol' grey areas!

I was taken off Imuran as it was causing my WBC to drop dangerously low and my Dr didn't want to risk me getting a serious infection. Methotrexate not an option as I'd like to have kids in the next few years and the Dr doesn't want me to risk being on it.

She told me my only real next step was to go to a biologic. I'm not nervous about the needles, just a little about the side effects and I know its a bit more aggressive of a treatment than what I need.

Wanted to connect with those on the moderate side of the spectrum and how Humira has been working for you!
 
Focus on possible side effects
Key word possible
DS is almost 12 and has been on humira for almost 3 years
No real issues
Gains weight and grows
Good luck
 
Hi

diagnosed with Ankylosing Spondylitis and apparently crohn's (AS gives me more problems, I still have gut twinges etc from time to time but so long as I don't overdo the diet I tend to ok-ish). Was approved for humira (for AS) after 3 months. Left knee is blown out but it's ok, some friends pulled together and got me an Irish blackthorn cane so I have something to shake at teenagers rolling by on Skateboards (hehe).

Was expecting pain. So packed up the fishing gear and went to my favourite spot. Injected myself there. Didn't hurt. Caught a fish and came home.
 
baillargeon said:
I just started Humira 11 days ago. Started with the 4 injections and they made me so sick I thought I was dying. I am not looking forward to the 2 shots coming up this weekend. I am hoping since the dose is less that I won't feel as sick. They told me it takes a few months to really start working and putting your crohn's into remission so I am hoping that is true. I am so tired of feeling sick and going to the bathroom 12-15 times a day. I just want to feel "normal" again. Whatever Normal is?
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Four!! Goodness me i thought the loading dose was 2 . Thats what I had @ least. Hope you feel better & quickly.
Best Wishes
Grant
 
I went to pick up my Humira yesterday and found out that my copay for it is now 4xs what it was! Anyone else experience this?
 
Do you have my humira copay card?
It covers the difference between your insurance and out of pocket .
If you take humira more than Every two weeks you need to call my humira and ask for an escalating to get it approved for more .
 
Hello/,

Been on Humira for 4 months now. Not sure if it's going to fully put me in remission. I still have bad days. How long does this Humira suppose to take, and do I still need to maintain a crohns friendly diet? Meeting with my Humira nurse tomorrow hopefully she can answer my questions.
 
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!
 
Sar said:
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!
Click to expand...


I wish you luck my friend..[emoji111]️
 
Sar said:
Just started on Humira yesterday with my four shot loading dose. Definitely made me very tired after. I'm still tired today but not nearly as fatigued as I was right after. A little nausea but to be honest I think that's my crohns not the meds since nausea and vomiting has been a big issue for me the last year. I'm looking forward to feeling better soon it's been a long flare up over the last year. Figures crossed that I gain some weight back so I fit into my clothes again. My body looks and feels so foreign to me right now. Come on Humira!
Click to expand...

The fatigue used to be a problem for me also. It used to knock me out within 15 minutes. The past 3 doses, it has not. Hopefully that will pass for ya. Never been sick on it, but always have a migraine all of the next day. I think as your body adjust, so does the side effects.
 
I believe the fatigue has to do with the B nutrition that your body is not getting. That's why my doctor put me on B12 injection, because my B levels were low, but that might be different for others. I do get the headache the day after I take my Humira injection. I always have fatigue.
 
I take the centrum silver mens +50. I take the vitamins for the older men because it has more in it, plus fish oil. I also take two a day instead of one. Because as you know, most food runs right through us.
 
POTTYTIME! said:
I take the centrum silver mens +50. I take the vitamins for the older men because it has more in it, plus fish oil. I also take two a day instead of one. Because as you know, most food runs right through us.
Click to expand...


Oh yeah!! I do take fish oil, but only one a day. Thx for the response [emoji106]
 
Has anyone ever had issues with bruising at their injection site? I took my shot last Wednesday pm. I know I looked at the site the next morning with no bruising or anything. I didn't notice anything in Friday either. I was in a bit of a rush this weekend, so I didn't look. But I've got a deep purple bruise there today. No bruising anywhere else that I have seen.
 
Hi BlueEyes, I got some bruising when using the Pens. But since using the syringes-nothing. I wonder if its the punch so too speak of the pen that causes the bruising. Certainly when using the syringes I gently insert the needle in & find the whole experience far more pleasant.
Best Wishes
Grant
 
SDScotty72 said:
Hello/,

Been on Humira for 4 months now. Not sure if it's going to fully put me in remission. I still have bad days. How long does this Humira suppose to take, and do I still need to maintain a crohns friendly diet? Meeting with my Humira nurse tomorrow hopefully she can answer my questions.
Click to expand...

I would maintain the crohn's friendly diet until you know Humira is working. If you have been on it for 4 months I would talk to your GI and see if something else could do better for you. It can take a few months for Humira to really get going. Some people do need to go to weekly injections.
 
You might have to stay on somewhat of an adjusted diet even in remission. I avoid all milk and milk products. I try to limit my cheese to long aged cheese, or at least avoid large amounts of normal cheese. Even soy and Almond milk affect me. Still I can eat most other normal things, Oh and I never touch alcohol. Still some things affect me and stimulate some symptoms but they clear in a few days.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 1.5 years - remission
 
Second the stay on the crohns friendly diet
DS is on the crohns exclusive diet with humira per his Gi
Basically fruits veggies lean non red meat and fish
No sugar or fillers - nothing packaged in a nut shell
 

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