Humira Club Support Group

[starbugged]

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.

 

[grahamburgers]

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]

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?

 

[POTTYTIME!]

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?

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.

 

[SunshineSam]

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.

 

[POTTYTIME!]

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.

 

[SunshineSam]

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.

 

[POTTYTIME!]

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.

 

[SunshineSam]

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...

 

[POTTYTIME!]

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...

Leg is the only option for me. Hurts like hell but I dont think I would like that pain in my belly

 

[CMT]

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?

 

[Pilgrim]

Unless you have a nurse to do the shot for you then definitely thighs or tummy.

 

[kurtflies12]

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.

 

[Layla]

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.

 

[POTTYTIME!]

Has anyone had the issue of With the humira working but not good enough to stay on it?

 

[kurtflies12]

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?

 

[POTTYTIME!]

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?

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.

 

[KHCD5]

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.

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

 

[MBO]

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.

 

[POTTYTIME!]

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

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.

 

[CrohnieCo]

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?

 

[kurtflies12]

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.

 

[ConfusedCrohny]

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

 

[KHCD5]

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

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...

 

[kurtflies12]

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.

 

[mik118811]

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?

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

 

[EKF]

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

 

[kurtflies12]

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.

 

[POTTYTIME!]

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.

 

[kurtflies12]

Good Luck. I hope all goes well.

 

[Elektrikhd]

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.

 

[SunshineSam]

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

 

[Tony H]

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

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 .

 

[Elektrikhd]

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?

 

[SunshineSam]

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

 

[Stardust_Fiddle]

My allergies and sinus issues have worsened on Humira also.

 

[2010mustang]

I just took my 2nd dose today. So far i havent aeen any changes. Hopefully i will soon. Hopeing it will also help with the joint pain and swelling.

 

[SunshineSam]

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.

 

[tonimacaroni]

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?

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?

 

[DougUte]

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.

 

[Ania]

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...

 

[POTTYTIME!]

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...

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.

 

[2010mustang]

Sorry for your son having this at a young age. When my wife injects me i just control my breathing and talk with her to take my mind off of it.

 

[Elektrikhd]

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.

 

[Ania]

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.

 

[Ania]

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.

 

[DougUte]

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.

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.

 

[Titanette]

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.

 

[Clash]

Ania there are some parents here that have children your son''s age on humira. Some of them choose to take the humira by syringe instead of auto-injector. They also have the GI px a serum of lidocaine to give with the humira. My son hasn't used this method but Mr chicken has a son, age 11, that does use the syringe and lidocaine. Since I tagged her she should see and can give you a more in depth explanation as to their procedure.

 

[Mr chicken]

Ds uses it
Will post lots of tricks tonight
He was 9 when he starred humira 2.5 years ago

 

[Ania]

Thank you for your responses.

Mr chicken, I can't wait for the advices.

My son has sacroilitis not Crohn`s, but I hope I can stay here anyway.

 

[DougUte]

Thank you for your responses.

Mr chicken, I can't wait for the advices.

My son has sacroilitis not Crohn`s, but I hope I can stay here anyway.

Your staying on this forum is not a problem with me! Inflammed joints in the lower back and spine does not sound like a lot of fun. Poor kid.

 

[Mr chicken]

Ds has crohns and juvenile spondyloarthritis so inflamed joints including the back
He is on humira and Mtx for crohns /JSpA
Humira is given by syringe
The Rheumo prescribed lidocaine to add to the humira syringe
I draw the lidocaine in a clean syringe from the vial and open the humira syringe at the stopper where I add the clean syringe of lidocaine to the humira syringe

Things to help with pain
Pull the box from the fridge 1/2 hour before
Emla cream for the skin Prick pain if needed or
Freezy spray
Ds doesn't use it only the pain of the med burns
We use new movies, squeezy balls
Let him ask questions and know exactly what I am doing step by step
( fwiw Ds now draws his own lidocaine )
Give him choices on location to get the shot
Time of day
What is on tv or music
What goodie to eat afterwards
Have him tell you how long it hurts 10 seconds etc
Have him look at you in the eyes during the shots
Ask open ended questions that he has to think about or describe things in detail
Let him push the syringe plunger in if he wants
Or put his thumb over your hand so he can control the plunger if he wants
Practice loosey goosey -relaxed muscles hurt less
Less pain if he is not screaming
Practice stop n go
If he says stop you don't push the plunger anymore
When he says go you push slowly
Teach him basics of meditation
Focusing on a happy thought - a pet , vacation etc...

 

[Ania]

Mr Chicken- thank you soooooo much!

How long does the pain/burn lasts? Is/was your son crying a lot? is he afraid when the shot time comes? I read that even adults get an anxiety..
How does your son handles that psychologically?

Have you noticed any side effects? I am traumatized by the side effects. I am afraid, that from happy, joyful, active boy, he will change into nervous, depressed child ...

I am sorry I am asking so many questions, but I have nobody to talk to..It is so strange and new, scary and terrifying .

In addition to this, English is not my first language, so all of that medical terminology is hard to understand

 

[Mr chicken]

We had the family see a child psychologist to make sure he didn't have issues
The child psychologist came up with the techniques above to give Ds control
He used to scream and cry over the shots
But once we gave him more control and he realized the burning pain was 10 seconds
No issues
He now talks while he gets the shots and I get an "ow that hurt " and nothing more
He is fine no side effects and no issues

 

[Elektrikhd]

For what it's worth, as I know perspectives change from childhood into adulthood, I was deathly afraid of needles as a kid, and the idea of ever having to give myself an injection (such as when I learned what diabetes was) seemed a frightening impossibility. I won't say that giving myself the Humira shots are nothing...but I realized a month or two in that I was doing something I once thought would be impossible for me. So it may not be easy, but it will work out.

 

[Ania]

We had the family see a child psychologist to make sure he didn't have issues
The child psychologist came up with the techniques above to give Ds control
He used to scream and cry over the shots
But once we gave him more control and he realized the burning pain was 10 seconds
No issues
He now talks while he gets the shots and I get an "ow that hurt " and nothing more
He is fine no side effects and no issues

Mr chicken- I read that to my son. I told him about yours. It is important that he knows he is not the only one who goes through it.
Thank you.

We will start Humira the first week of August.

 

[Ania]

.but I realized a month or two in that I was doing something I once thought would be impossible for me..

I think it might be too hard to see it that way to a 10yold.

 

[Caitlin84]

It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.

 

[POTTYTIME!]

It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.

Once you get the first one down, its all down hill from there. Just never get use to the burn though.

 

[Ania]

. Might not come to it, they might decide on Remicade.

What is Remicade- a non-injected medication?

 

[Ania]

We were diagnosed a week ago. I as a mom, start to understand that this is maybe the best way to treat this disease.

I don't even freak out about the possible side effects anymore. the injections and fear that that our life will go from injection to injection, with trauma and a lot of crying. I might be wrong.

Mr chicken- is your son getting more infections while on Humira?Does he misses a lot of school days?

 

[Caitlin84]

What is Remicade- a non-injected medication?

It's an infusion. So someone else would be putting the needle in for an IV administration.

 

[Mr chicken]

He doesn't miss a lot of school
He has been on biologics for three plus years including remicade ( had an allergic reaction to it after 8 months). Ds is very atopic so he is allergic to lots of things including food drugs etc.,,
As long as your calm your kiddo
Will get calm
No screaming or crying
10 seconds - that's it then the pinch /burn is done
Vs
A child curled in a ball not moving not eating crying day in and day out
That was reality on the lower meds
So Ds reminds him self it's worth it for 10 seconds


Remicade does not hurt at all
Just an iv
But must be done at a hospital and is a four hour infusion every 6-8 weeks

 

[MBO]

It sounds like I am going to be started on Humira or Remicade. I'm an RN, I give injections all the time. I have to admit I am wary about if I will be able to do it or not. The idea kind of freaks me out. I think I can do it, but I'm afraid when it comes down to it I won't be able to. Might not come to it, they might decide on Remicade.

Before starting with humira, I read a lot on internet and I was kind of scared, then I started with it and it was nothing. It hurts? Yes, but for me is even less than 10 seconds, and the pain is totally bearable.

 

[kurtflies12]

The pen stings more than does the syringe. I took the pen for two years thinking that it was easier, but when I switched insurance companies the new company somehow got me setup on the syringe and it was 50% less painful for me. It seems the pain comes from the speed of the fluid that is being injected and not the Humira, so I just push the plunger slowly and all seems ok. Don't give this a second thought. You will do great. Of this I'm sure=)

 

[Ania]

As long as your calm your kiddo
Will get calm
No screaming or crying
10 seconds - that's it then the pinch /burn is done

He is very positive and calm right now. He is a smart boy that way, so I hope for no screaming and panicking.

I wondered why Humira was our doctor first choice?

 

[Ania]

The pen stings more than does the syringe. I took the pen for two years thinking that it was easier, but when I switched insurance companies the new company somehow got me setup on the syringe

We will have syringes

 

[2010mustang]

Im on wk 6. So far bm is a little less but not great. still have horrid joint pain and swelling. Hope it helps joints soon. Dr. Said if im not significantly better ill befin 6mp in 2 months to help speed up the process.

 

[kurtflies12]

I would say it took about four months for me to see a big difference with my stomach , and my joints have never felt better than they do now. Hang in there.

 

[Layla]

I've been taking Humira since Feb this year and while the D hasn't improved as much as I would like, my bloods are now good and I feel a lot better all round. Much less fatigued, better mood etc. I don't seem to have any side effects and I don't get a bruise or rash or anything at the injection site.
My arthritis has all but disappeared, amazing!

I can now mostly control the D with psyllium and if this is as good as it's going to get I'm fine with that. The only thing that really needs to improve are my fissures, but even they are getting more manageable.

 

[Mr chicken]

Ania
Some insurance companies require you to fail other drugs first
Sometimes that mean humira before remicade

 

[Caitlin84]

I feel better about it now. I thought it was an intramuscular shot for some reason. A subcutaneous shot doesn't bother me.

Thanks guys!

 

[Angie's Mom]

Hi Humira users,
So I started using Humira a year ago and while not perfect, life was tolerable. About 3 weeks ago I started to flare up again. The flare gets worse daily. My GI is (of course) on vacation! I really don't want to go to the hospital because they just seem to default to prednisone. Anyone know what the protocol is when your meds no longer work?

 

[Mr chicken]

Have you talked to the Gi about trying formula only ( boost ensure etc...)
Can be as effective steriods... Sometimes???

Typically flares equal
Bloodwork
Stool tests
Imaging
Scopes
Steriods/een ( formula only)
Then decide on med change

You may want to give the on call Gi a call

 

[Angie's Mom]

Have you talked to the Gi about trying formula only ( boost ensure etc...)
Can be as effective steriods... Sometimes???

Typically flares equal
Bloodwork
Stool tests
Imaging
Scopes
Steriods/een ( formula only)
Then decide on med change

You may want to give the on call Gi a call

Hi Mr. Chicken,

I've never heard about trying formula only. I'll have to ask.

As far as an on call GI, there isn't one.

You mention med change, I don't even know what other medicinal options are left. I've already been on Remicade!

 

[Pilgrim]

Sometimes you can call the nurse at the GI office. Sometimes they will keep in touch with GI via email regarding more important issues with patients.

My daughter started to flare recently. Our GI moved her to a mostly formula (70%) diet and moved the Humira from bi-weekly to weekly. Maybe your GI can move frequency of your dosage?

 

[Angie's Mom]

Unfortunately my GI's office doesn't have a nurse, just a secretary. It's a disgustingly flawed system.
I suspect they will have to increase my dose as well. I'm just not sure how to obtain remission.

 

[SunshineSam]

Angie's Mom, what type of issues do you have? I have a narrowing of the intestine which causes a back up. So when in a flare i suggest you back down to broths and ensure and nightly MiraLax.

If you have the runs issue refer to a B.R.A.T diet to soak up the juices in your belly and gut. Thats Bread, Rice, Applesauce and Toast.

Hopefully this proves to be of some help. Stay away from the steroids, im in my first taper and its hell. Im telling everyone i know to never EVER take dreadnisone prednisone.

 

[Angie's Mom]

Thanks Sunshine. Right now I'm back and fourth between diarrhea and constipation (no stool, just blood and mucus.)

I had a really terrible night last night so I think I might need to go to the hospital just to get some IV fluids. Wish me luck.

 

[Titanette]

I was on Humira for over a year and lost my insurance, therefore lost the Humira. I have been able to keep my Crohn's under control up until the last three weeks. It has gotten bad. I just do not eat in order to work. I see my doctor on Tuesday (not soon enough). I am assuming I will go back on the Humira now that I have insurance again. As much as I dread it due to all the side effects I suffered from (headaches, sores all over my back and chest, alleriges so severe and I had never had them before). Right now all i can think about is getting back to eating. I have lost 14 lbs in the last three weeks.

I have read that going off of it and going back on it can lead to it not being as effective. I hope this is not true. I know I have 50 tests ahead of me to make sure I can go back on it, but I hope that goes really fast. Hate feeling like this and unable to eat.

 

[Pilgrim]

Could you drink nutritional supplements like Boost or Ensure just to have some vitamins and calories while you wait?

 

[Titanette]

They go right through me like everything else and give me the horrible pain. I just do not eat during the work day, when I get home i am eating egg whites and toast. I know those two will not kill me, do not stay with me long, but do not kill me.

 

[Clittle]

I am so sorry to hear he has this at such a young age.. I didn't know this disease was found at such a young age. I am 26 was recently diagnosed with crohns in march. My dr prescribed me to Apriso and had me on the prednisone taper.. Apriso worked for about 3 months. I was so excited and thought my life was back to normal and then one day I woke up and I guess was my first flare since starting medicine but this flare has not went away..basically the meds worked for a little while and I became immune to them and now apriso no longer does anything for me. I'm miserable right now and am waiting on humira having to deal w my symptoms with out medicine, so actually I think this is best for your child to start right out with humira. When I went in to see my Dr. It was like he already knew he was going to have to start me on humira or something stronger and really pissed me off. I wish he would have just started me off with humira.. I hope all goes well..

 

[Pilgrim]

Sometimes they (the Doc's) have to go through other meds first in order to satisfy insurance requirements. It is really unfortunate. But a lot of people have some quick success with Humira, so maybe it will work that way for you now that you are headed down that road.

 

[kurtflies12]

I wish I had started out on Humira, but I had to try other less expensive methods first. As each one failed I did more and more damage to my colin, i.e. scar tissue. I wonder if any of the other cheap fixes ever work? Has anyone had any luck with these?

 

[Elektrikhd]

I'm guessing we're not the most representative group. We either have doctors who were able to get us on Humira right away, whether or not we "truly" needed it, or we failed other drugs due to the severity of our disease. My understanding (could be wrong here) is that people with mild Crohn's are ok with the weaker drugs and diet. Maybe they have to be very strict on their diets, too.

 

[Clittle]

I'm guessing we're not the most representative group. We either have doctors who were able to get us on Humira right away, whether or not we "truly" needed it, or we failed other drugs due to the severity of our disease. My understanding (could be wrong here) is that people with mild Crohn's are ok with the weaker drugs and diet. Maybe they have to be very strict on their diets, too.

I'm guessing it's bc of insurance purposes. Mine I'm told is mild to severe but I'm guessing more severe... I'm very new at this it's only been a few months and I think it's so hard to figure out what my "triggers" are. Nothing bothers me right away. I always have episodes late in the night like 3 or 4 am and then 8 or 9 am in the morning.. so it's like I have had my breakfast lunch dinner and I'm fine and then every thing happens in the night or am...is this normal w ppl w crohns or do most ppl get effected right away and can pin point exactly what triggers symptoms?

 

[wjm1973badgut]

Hi Clittle,
Nigtt is when the fevers set in , it probably happens throughout the day but you might not notice them. I suggest a food log , dont expect immediate reaction, it was not abnormal for a food to affect me for 1-3 days after ingestion. Your going to have to find thing to add and remove from your food list. I would start with no milk products, food low in citric acids and keep your sugar counts low, steer clear of high ruffage - one by one add or suptract things from your food list. You will start to see things that flare your symptoms.

Dx'd JAN ,3/2013
Meds: AZA, Lialdo .. almost no effect
LDN - 4 months - mild help,
Preg - 1 year on/off - good effect
humira 1.9 years - remission

 

[tonimacaroni]

Hello fellow Humirans. I have been on 40 mg injections every 14 days since March. In the last month I've had symptoms again, so my doctor is moving me to every 10 days. I feel like it's not going to work, but I'm trying to be positive. Any luck with that strategy out there? I am worried it will be 10 days, then 7 days, then double doses.... ugh.

Anyway, I had made it so I did my injections on Saturday since I get a nasty "hangover" the next day. With a 10 day period, that means my next injection is tomorrow, and i'll have to work through my hangover on wednesday. Anyone else get these?

 

[kurtflies12]

I'm tired the day after I take my shot so I moved my day to Saturday evening. I'm a little tired at church but it's ok. I was told that a few day either way will not effect the drugs performance. It took about six months for me to feel better on Humira and many times they have to add another drug like Azathioprine. That's what did it for me.

 

[Angie's Mom]

So I had my colonoscopy yesterday and unfortunately they found over 1.3 feet of diseased bowel despite the humira. I have no idea where I go from here. I went to the E.R and the doctor told me, "well you don't look sick, so it's probably not as bad as you think..."

Turns out it was worse! Fantastic diagnostics at work!

 

[Titanette]

Finally got insurance, got in to see my GI Doctor, ran all the tests and she called me in a starter pack to get me back on the humira. My pharmacy had it ready for pick up. YAY! Got there and to my surprise I owe $8,000. What the hell? I called me doctor spent hours trying to figure out a plan. met with a company to help get me on the Humira Protection Plan. Finally got the ball rolling and now I have to wait on my pharmacy to get approval for it. They informed this could take days. I am in such bad need of it. I have lost over 20 lbs, I can't eat anything. Just say a little prayer for me. I am not in a position to miss work and it is killing me to get through the day with no food. I know this will work out, i just needed it yesterday.

 

[Pilgrim]

Is it possible to do the injection right after work to give yourself the longest amount of time to recover before you have to go back to work? Hope that made sense.

Maybe you'll move quickly to weekly injections and at least it will be easier to schedule...

My daughter was really tired for the first few months of injections but then I think her body grew used to it. Now she has moved to weekly and I notice that fatigue sets in about 4-6 hours after the shot. Not sure how that will work with school

I hope you feel better with the increased shot frequency. Also hoping you can "fake" your way through your work day in one piece.

I've never heard of people getting double doses - but you never know. I think at some point the GI will just give up on it as a treatment and move on to the next possibility.

 

[Ania]

My daughter was really tired for the first few months of injections but then I think her body grew used to it. Now she has moved to weekly and I notice that fatigue sets in about 4-6 hours after the shot. Not sure how that will work with school

Pilgrim- how does your daughter deals with the injections?

We are going for the 2nd opinion on Thursday, and next Friday we'll do the 1st shoot. Very scared.

 

[Caitlin84]

Finally got insurance, got in to see my GI Doctor, ran all the tests and she called me in a starter pack to get me back on the humira. My pharmacy had it ready for pick up. YAY! Got there and to my surprise I owe $8,000. What the hell?

$8,000?! That's absolutely horrifying. I haven't been to work in three weeks and am really counting on the Humira (that I hopefully start Tues) to kick in enough so I can go back to work.

 

[Mr chicken]

https://m.humira.com/myhumira/savings-and-co-pay

Look into my humira protection plan
It can really lower the cost for it sometimes as low as $5

 

[POTTYTIME!]

Been on Humira since February. Very little good has came out of it. Waiting on latest round of test to see if im changing meds or if I have scar tissue in my intestines.

 

[Pilgrim]

Pilgrim- how does your daughter deals with the injections?

We are going for the 2nd opinion on Thursday, and next Friday we'll do the 1st shoot. Very scared.

At the beginning it was tough. She worried about it alot before hand (we have to drive to a clinic to have a nurse do the shot) we would drive with the soundtrack from the movie "Frozen" cranked up so she could sing. Then I could cry while I drove and she wouldn't notice

Somewhere about 3 months in, she stopped crying during the injection. We talked beforehand every time about how the injections meant that she would be able to eat (fill in the blanks - carrots, potato chips, whatever) - she had just finished a second 6 week session of Exclusive Enteral Nutrition before Humira. I think that helped her understand a little better - to make a connection.

I did take lollipops and would give her one to suck on right before the shot. It was a little bribe which she was happy to take.

She is 7 months in now. She counts through the pain of the shot which truly only lasts about 10 seconds. It is hard. But, they can get used to it. And in her case it has really helped her get some normalcy back into her life.

Your little one may be very tired after the first set of shots.

 

[Ania]

Pilgrim- thank you.
Do you add Lidocaine to the Humira?
Also-how tired would she get? Did she stay in bed because of that? What about school and being so tired? How long would this last?