Humira Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Hello everyone, I was searching on the internet about Crohn`s and found this forum. My Name is Rafael Valente, I`m from Rio de Janeiro/ Brazil. I take humira shots justs by myself ( 15/15 days ) since 2009 and not a single side effects, just some small pain in the injection area for 3 minutes in the bely.

My Crohn`s started in 2004 and only is 2006 I was able to certify what desease I`ve have. From 2006 until 2009 I lost around 70 Pounds, and more than 10 times in emergency. After start the Humira, in 6 months I got back the weight I`ve lost and I participate in Abbott Health check program in Brazil to see the efficiency of their product.

By the way, the success rate of humira appears to be linked with European Strains ( My Father is Italian and Mother is from France ), Brazilian Mix appears to not have a great success rate with Adalimumab, as Brazilians appears to create anti-bodies for Adalimumab.

The doctor just request that I avoid Alcoohol, Smoke ( I`ve quit in Dec 2012 ) and spicey foods.

Since Treatment with humira Starts, never more needed to go to the ER...

So, anything that I can help from Brazil, please let me Know!

Check on Youtube => /watch?v=c6jzPISp0Ko

Sorry for my english...

Best Regards!!!
 
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Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
 
Titanette said:
Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
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Yes. I have been on it ever since I was diagnosed. As far as I know, it is not uncommon to be prescribed. Typically used to control inflammation in the large intestine (UC) but can also be effective in the small intestine with proper dosage.

Don't worry too much. If you are comfortable with your Doctor and her expertise, I would go ahead and take it. May be ask her for the specific reason why she thinks you should start taking it, if you haven't already.
 
I had so many crap doctors in the process of trying to figure out what the heck was wrong with me that I no longer trust any of them. I feel like they just want to pump you up with a bunch of crap. All my blood work came back good minus the inflamation, but it was lower than the blood work just before starting Humira.

Thanks for responding! It looks as though she is not giving me the option, her response was where do I call in.
 
I have really lost faith with these doctors. Switched to a new GI, says I have inflammation in TE. Puts me on gut wrenching antibiotics, 4 months prednisone and Humira. Guess what? I have a non functioning gallbladder that could be the root cause of all my problems. Question is why didn't he r/o GB a year ago?

Yep I feel they just want to pump you full of drugs. I took myself of of ALL of it and want to see how I feel after my surgery on Thursday. Sorry to get OT!
 
@Titanette: I hear you. I recently changed my GI and I am cursing myself for not having done that much earlier despite being less than pleased with my previous doctor all along. I guess I was afraid of change and I was already overwhelmed with the diagnosis, prescriptions, and Remicade infusions that quickly followed for more than an year. I was so frustrated one day and researched online and hesitantly setup an appointment with a different doctor. I am glad I did and he recommended Humira instead which seems to be helping me a heck lot better than Remicade. More than anything, I feel like I can trust his judgement and am more comfortable asking questions and discussing options.

Bottom line, if you are unsure, don't hesitate to get a second opinion and in the process, may be you will find a Doctor who is a better fit to your needs and condition. I understand how unappealing that is, but it is worth the effort because of the chronic nature of the condition.
 
hi. I need to do my shots(x2) today and I woke up with tonsillitis. shall I do the shots or call the doctor? I need antibiotics every time I get tonsillitis and with humira might not be a good idea.
 
Don't take the shots! Once I took it with a mild cold on board and it ended up going into full blown bronchitis and laryngitis.
 
LodgeLady...
Everyone responds differently. I have taken the shots many times with colds. Everyone responds differently. I have asked many times and my doc has always said go ahead. He cites the documentation and his experience. You seem to respond very differently to the drug that many others (asthma attacks, bronchitis, etc). It is fine to share your experiences, but I would be care on giving out such direct advice based on a small sample set.
 
mrjohns2 said:
LodgeLady...
Everyone responds differently. I have taken the shots many times with colds. Everyone responds differently. I have asked many times and my doc has always said go ahead. He cites the documentation and his experience. You seem to respond very differently to the drug that many others (asthma attacks, bronchitis, etc). It is fine to share your experiences, but I would be care on giving out such direct advice based on a small sample set.
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Glad you have no issues. I would want to know ALL reactions. They are not all good.
 
I agree they are not all good. One should be aware of what can happen, but based on the data. What needs to be taken into consideration is advice from one's doctor (assuming you have a knowledgeable doctor you can trust). The biggest concerns are TB, HepB, certain fungal infections (I was told it was a certain fungi found in dry arid regions), and not necessarily respiratory or flu type infections. That is, unless you are prone to run away infections and then, maybe this type of treatment isn't for that person. Respiratory infections were reported in 17% vs 13% with placebo. Again, your experience may be different and this type of treatment might not be for you. I, though, wouldn't advise anyone to not take a treatment. It also depends on what you are treating. Is the "cure" worse than the "disease". I would take a few extra colds over my Crohn's and Psoriasis.
 
I called him and he advised to wait a few days then do the shot. im not taking antibiotics, hopefully it will ease in 2 days and do the shot. since the first 4 shots I had ear and a fingernail infection! now tonsillitis :) happy days here
 
3kiddiesmumma said:
I called him and he advised to wait a few days then do the shot. im not taking antibiotics, hopefully it will ease in 2 days and do the shot. since the first 4 shots I had ear and a fingernail infection! now tonsillitis :) happy days here
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I'm sorry you're having such a tough time. I have been taking Humira since December and I can feel my body try to come down with something for a day or toe and then luckily so far... Fight it off.

Hang in there and I hope it helps the crohns!
 
Ckoenig said:
I'm sorry you're having such a tough time. I have been taking Humira since December and I can feel my body try to come down with something for a day or toe and then luckily so far... Fight it off.

Hang in there and I hope it helps the crohns!
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Thx Ckoenig.
 
Joining the Humira club this week! After ten months of remission (maintaining on just pentasa) my body decided to rebel and my Crohn's is worse then ever. So anxious to get started. I'm a little nervous because my liver is already on the fritz, but it seems like any treatment option is sure to kill the liver. I'm going to be doing bi-weekly liver blood tests which should be interesting.
 
DS has been on humira for almost a year now and remicade before that- he has had multiple ear infections as well as strep throat ( but he was 8 -10 years old so normal for a kid).
He has always been able to get his shout as long as he was on an abx and fever free for over 24 hours.


Hope your tonsillitis feels better.


The only time we delayed a few days was due to having his tonsils removed. ;)
 
Need help!!

Hi all,

I haven't been on here for a while but really need some help!!! I've been on Humira for 3 years now (which I've put on so much weight :depressed: )
I already have one child but I got Crohns when I was pregnant but was not on medication. I am looking to have another child and wanted to know if anyone has fallen pregnant on Humira? And if the baby was ok I don't mind myself suffering but I do not want me child to. I'm a little bit worried!!

Xx
 
my little penguin said:
DS has been on humira for almost a year now and remicade before that- he has had multiple ear infections as well as strep throat ( but he was 8 -10 years old so normal for a kid).
He has always been able to get his shout as long as he was on an abx and fever free for over 24 hours.


Hope your tonsillitis feels better.


The only time we delayed a few days was due to having his tonsils removed. ;)
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I delayed only one day as the doctor said, I used only home remedies and worked. didn't feel any worse after I took my shot and tonsillitis was gone after. so all good :)
 
Faye Faye xx said:
Hi all,

I haven't been on here for a while but really need some help!!! I've been on Humira for 3 years now (which I've put on so much weight :depressed: )
I already have one child but I got Crohns when I was pregnant but was not on medication. I am looking to have another child and wanted to know if anyone has fallen pregnant on Humira? And if the baby was ok I don't mind myself suffering but I do not want me child to. I'm a little bit worried!!

Xx
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YEP! I had a beautiful boy on Remicade and a gorgeous girl on Humira. Both very healthy. The only restriction I had was to stop 3rd trimester and during breastfeeding.

GOOD LUCK!
 
Titanette said:
Just saw my Crohn's doctor last week and she wants me to start taking lialda. She said it is to prevent colon cancer. Has anyone else been put on this? I already take Humira, I have had to go on blood pressure medication, I really prefer to not add any more drugs to my system.

Just curious if anyone else has had this recommendation or has been on it.
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I have been on Lialda in the past, and it was recommended to me just for stool forming. I don't see any problems with it, other than having to swallow a few more pills a day, and the monthly cost. There doesn't appear to be any health issues with this drug.
 
Thanks for that info smack116. After reading all the info on it I do not feel it is something I have to have to, at least right now. I let my doctor know how I felt and she has now backed up some and said I do not have to do it at this time.

I do not think these doctors understand the cost of things.
 
Hello everyone. Well after 4 weeks of fighting with my new insurance company, I finally got my Humira today. Sickening as this sounds I was jumping up and down with joy. I started in October 2013, stopped in November for 2 rounds, started again in late December, Stopped early January due to insurance company denying me and then refusing to reopen the case after it was appealed (doc had to order all over again). Today I finally get it and lo and behold, I develop a cold sore.

My question(s) are to anyone/everyone is, do you have cold sores since being diagnosed with crohn's? I had never had a cold sore until I was diagnosed with crohn's, and about two weeks ago, I developed canker sores. Any relation? I realize that canker and cold sores are completely different, but I find it odd that while off of Humira (and feeling crappy,) I get the two things I never had before my disease.
 
Humira is an immunosuppressant . Your body may have fought off these infections in the past. Now on Humira your body will not fight off illness as readily as before. Probably explains the occurance of these new sores.
 
ECang said:
Im starting Humira today! should i do legs or stomach? i think i might have my fiance inject it for me because I am a little scared of needles lol. Any side effects i should expect?
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I do it in my stomach - just took it tonight. Have been on it for about a year - it has really helped me with the foods I can eat and the pain. I take it in my stomach, after freezing the skin with one of those blue ice packs. Then I use the alcohol swab and the do the shot. I would try to do it yourself - I hate needles and it really is not that bad. I have the pen so you can't see the needle - it looks like a magic marker! The whole thing takes about 10 seconds. Only the last couple seconds hurt. Then I put a bandaid on it in case there is a little bit of bleeding. Let us know how it goes.
 
This has probably been answered in previous pages, but, is swelling/redness/itchiness at the injection site a concern? I've been on Humira once a week since November, but the last three injections I've gotten that reaction every time. Is it just a common side effect, or is it something I should pay more attention to?

I see my GI in a week or two so I'll probably mention it to him then because I'm terrified of building up a resistance to another biologic... :(
 
Reaction at the injection site is the most common side effect. That's not to say it isn't something you should be worried about. Talk to your doc.
 
theOcean said:
This has probably been answered in previous pages, but, is swelling/redness/itchiness at the injection site a concern? I've been on Humira once a week since November, but the last three injections I've gotten that reaction every time. Is it just a common side effect, or is it something I should pay more attention to?

I see my GI in a week or two so I'll probably mention it to him then because I'm terrified of building up a resistance to another biologic... :(
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I started getting the red, swollen, itchiness a the injection site after about 3 or 4 shots. Initially the itching was so intense that I had to use some cortisone cream for about 3 days. I also made sure to take an antihistamine the day of my injection. Gradually the itching stopped but it was just red and swollen and then suddenly, after 8 months, the injection site reaction stopped completely. I don't take the antihistamine anymore either. My GI doc did not seem to be worried about it but I would mention it to your doc when you seem him next.
 
Deborah said:
I do it in my stomach - just took it tonight. Have been on it for about a year - it has really helped me with the foods I can eat and the pain. I take it in my stomach, after freezing the skin with one of those blue ice packs. Then I use the alcohol swab and the do the shot. I would try to do it yourself - I hate needles and it really is not that bad. I have the pen so you can't see the needle - it looks like a magic marker! The whole thing takes about 10 seconds. Only the last couple seconds hurt. Then I put a bandaid on it in case there is a little bit of bleeding. Let us know how it goes.
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I don my stomach too and really don't bother me at all. no swabs(just have a shower before) and if I had a drop of blood it stopped straight away. I got confused today and had my shot and should be next week :( im so embarrassed to call my doc, hes lovely but its such a stupid mistake. I put it in my phone to remind me in the future. anyone did this before?

just wanted to show you a link a friend sent me today. do you believe this is true? I have doubts but im torn about it too


http://quirkycooking.blogspot.com.au/2014/01/guest-post-recovering-from-crohns.html?m=1
 
I don't know. It seems like a big push for her new product/business. I know everyone responds differently BUT if this product was all that we'd be hearing about it a lot more.

I am all about diet right now and less about medication. Hope I can find the right mix.
 
I am new to the forum. I started taking Humira in November 2012. It worked for about 2 months and has stopped working. The doctor added Methotrexate and it is still not working. I still have painful diarrhea. What do I do now?
 
New On Humira & On Predinsone-new bleeding

I have been taking Lialda for three years and was doing very well up until a few months ago, no side effects that were bothersome.
Hi All,
Just started Humira 4 injections a few days ago. How long does it typically take to work? Also seeing bright red blood after not having any for weeks. Is this a typical reaction to the Humira or has Prednisone stopped helping?
__________________
Diagnosed In 2010 with Crohn's Disease

Just started Humira 4 pen starter dose
Also taking Prednisone
Lialda
Florastor
 
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Mychelle said:
I am new to the forum. I started taking Humira in November 2012. It worked for about 2 months and has stopped working. The doctor added Methotrexate and it is still not working. I still have painful diarrhea. What do I do now?
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Are you taking anything in particular for the D? Lomotil or Loperamide (prescription strength Prilosec) should do it. I take Humira, but it is just a part of my regimen to control symptoms.
 
Pending the fedex fairy, getting my loading dose tomorrow! Has anyone else skipped over the immunomodulators? Right from steroids to Humira/biologics?
 
nikimazur said:
Pending the fedex fairy, getting my loading dose tomorrow! Has anyone else skipped over the immunomodulators? Right from steroids to Humira/biologics?
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I started on Humira without any other Crohn's meds, then had to add Azathioprine and will likely be going to weekly Humira injections next month. It has made a positive difference, though, just not as much as I had hoped. :poop:
 
I too have suffered high blood pressure since going on the Humira. I had never had that problem before. I asked on here without much response so I am not sure, but now that I know it has happened to someone else it makes me think what I originally thought, it has to be related.
 
Michelle,

DougUte said:
Are you taking anything in particular for the D? Lomotil or Loperamide (prescription strength Prilosec) should do it. I take Humira, but it is just a part of my regimen to control symptoms.
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In addition to 2 loperamide, I am taking 3 fiber pills a day. My MD told me I could go up to 6 fiber pills a day and 8 loperamide, if needed. You might take to your MD about starting fiber pills. The combo of loperamide and fiber pills really helps me out. Also I stay on a somewhat low-fat diet, although I do enjoy my salad dressing and other high fat stuff once in a while.

Let us know what happens.
 
Hello All,
After responding really well to Humira for about a month when my fistula almost disappeared much to my astonishment, it started getting worse again essentially to the state it was before starting Humira.

I was very excited and relieved for a short period and am going through a cycle of disappointment, frustration and anguish now. Saw my doctor yesterday who felt that I may have developed antibodies and ordered a test to confirm that.

The doctor felt increasing the dose (weekly instead of biweekly) may be the next logical course of action. Was wondering if anyone had similar experience and success with this approach. I have been taking 6MP for more than a year now and was on Remicade prior to Humira.
 
I've skipped my last two doses of Humira (yesterday being 2nd time) and (God I hope I'm not jinxing it) I think I may have less mental issues. . .

*fingers crossed*
 
Been on Humira for about 6 weeks now and I'm feeling so much better. Still on Pred but it's getting lower week by week. On 3 tablets which is the lowest I've been on.

My appetite has increase ALOT, I'm also trying a lot more foods and I seem to be okay.
Tying a lot of junk food and crisps which I know is bad but I seem to be okay.
I'm on a low fibre diet.

Also had a Chinese takeaway on Friday and was 100% okay :))))))
Hopefully things stay this way

I would prefer to eat less, also when brushing my hair I seem to be losing more than usual but nothing to worry about yet
 
So, after two and half years on Humira every two weeks, I've been bumped up to Humira every week due to a flare, I was on Prednisolone, which made me feel like I could run a marathon! but that were commenced by my GP, which my GI didn't want me on, so he stopped it two days in. Hopefully I feel back to normal soon.

Also, I'm Iron deficient, or something like that! I remember overhearing my GI and another doctor talking about putting me on Iron infusions when I went to see him, I really should have asked him exactly why, but I remained quiet for some unknown reason. Anyway, I just received a prescription in the post for Galfer Iron;

http://www.netdoctor.co.uk/diet-and-nutrition/medicines/galfer.html

and noticed this when I googled it;

Not to be used in:

Inflammatory bowel disease such as ulcerative colitis or Crohn's disease

??
 
hey IAmTheWalrus,
Sorry to hear about your flare. I don't have much to offer regarding your concern but just wanted to wish you good luck and thank you found the risk/benefits link in your sig. Found it to be quite resourceful.
 
idlebrain said:
Hello All,
After responding really well to Humira for about a month when my fistula almost disappeared much to my astonishment, it started getting worse again essentially to the state it was before starting Humira.

I was very excited and relieved for a short period and am going through a cycle of disappointment, frustration and anguish now. Saw my doctor yesterday who felt that I may have developed antibodies and ordered a test to confirm that.

The doctor felt increasing the dose (weekly instead of biweekly) may be the next logical course of action. Was wondering if anyone had similar experience and success with this approach. I have been taking 6MP for more than a year now and was on Remicade prior to Humira.
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All,

In continuation to my post above, was told by my Doc that I haven't developed any antibodies yet. The Dr. wanted to put me on a weekly Humira dosage but the insurance company rejected the request saying I need to wait at least 24 weeks before they can consider approving the increased dosage. So I am advised to instead increase my 6-MP dosage from 50 mg to100 mg in the interim.

Not sure how to react but putting faith in my Doc for now.
 
nikimazur said:
Pending the fedex fairy, getting my loading dose tomorrow! Has anyone else skipped over the immunomodulators? Right from steroids to Humira/biologics?
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I went straight from prednisone to Humira with a dose every other week. No Imuran and I hope it stays that way. 1 Biologic was already tough to accept.
 
Hi everyone. I'm joining the club this week. I'm currently on apriso , 6mp and pred and I still bleed. Hope this helps, I could use some help. Heh.
 
IAmTheWalrus said:
So, after two and half years on Humira every two weeks, I've been bumped up to Humira every week due to a flare, I was on Prednisolone, which made me feel like I could run a marathon! but that were commenced by my GP, which my GI didn't want me on, so he stopped it two days in. Hopefully I feel back to normal soon.

Also, I'm Iron deficient, or something like that! I remember overhearing my GI and another doctor talking about putting me on Iron infusions when I went to see him, I really should have asked him exactly why, but I remained quiet for some unknown reason. Anyway, I just received a prescription in the post for Galfer Iron;

http://www.netdoctor.co.uk/diet-and-nutrition/medicines/galfer.html

and noticed this when I googled it;

Not to be used in:

Inflammatory bowel disease such as ulcerative colitis or Crohn's disease

??
Click to expand...

That was a good link in your signature line. You are probably not absorbing iron as many Crohnies have issues with it. My GI said a daily vitamin with iron can be absorbed over time. The old timer women used to take a tablespoon of molasses daily for iron during their "season.""
 
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CMT said:
I have been taking Lialda for three years and was doing very well up until a few months ago, no side effects that were bothersome.
Hi All,
Just started Humira 4 injections a few days ago. How long does it typically take to work? Also seeing bright red blood after not having any for weeks. Is this a typical reaction to the Humira or has Prednisone stopped helping?
__________________
Diagnosed In 2010 with Crohn's Disease

Just started Humira 4 pen starter dose
Also taking Prednisone
Lialda
Florastor
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Hi CMT

After starter dose are taking it every 2weeks? That's is how I started out been on it 4 months and haven't seen any change at all. Just saw my GI today and has bumped it to once week starting this week. He also has 6-MP staring this week once he see what my blood work says today.

I'm new to this so can't say for sure but it seems they start at med dose before having go to once a week. Maybe you will respond on this and feel better. I'm hoping it works for you.
 
Wednesday will be my first maintaince dose of Humira. One month, and no improvement. I actually have gotten worse during this time (including a lovely ER visit Friday night). How long did you/your doc wait to see if it makes an improvement/ to keep you on it?
 
What an unkind disease. I hope you all can find remission. I had my surgery Nov 2012 and no symptoms yet. I'm praying for a long remission. God Bless you all....
 
nikimazur said:
Wednesday will be my first maintaince dose of Humira. One month, and no improvement. I actually have gotten worse during this time (including a lovely ER visit Friday night). How long did you/your doc wait to see if it makes an improvement/ to keep you on it?
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It varies. I started Humira back in November and my GI checked this February -- but we won't get the results for awhile yet, since otherwise they can get pricey to get assessed. I'd stress it being ineffective to your GI, though, if you feel like it's not doing anything and it's been too long. That was my experience with Remicade and everyone kept telling me to wait, and I ended up in the hospital.
 
Water and Crohn's

Recently I started to notice that I'm dehydrated more than in the past. I've had Cronin's for decades now and have seen a rise in my creatinine level. My GP says she this is a common characteristic in her Cronin's patients. We who have the disease have more bowel movements which tend to be more liquid than the general population which means we lose a lot of water.

My thinking is that we need more water to flush out our kidney than the general population. If we aren't drinking enough water the results show up in a higher creatinine level.

What are your comments on this subject?
 
nikimazur said:
Wednesday will be my first maintaince dose of Humira. One month, and no improvement. I actually have gotten worse during this time (including a lovely ER visit Friday night). How long did you/your doc wait to see if it makes an improvement/ to keep you on it?
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Sorry about the delay. I do hope things act quicker for you.
But it was 4 mouths he said we needed to wait 3 mouths just to see if it worked. From what he said I was on low dose every 2 wks and by taking once a week would be the max I do think. If no improvement in 6 wks we change remacade. It's to early to tell but I'm not bleeding like I have been just this pus come from the setont. So there maybe hope after all for me it's been since July I've been very sick.

The only real comfort for me is to sit in my hot bath for couple hours I just keep adding warm water I put Epsom salt in the water. Travel around on my iPad. Do work and studying and research as bath.
 
Sparkle2012 said:
What an unkind disease. I hope you all can find remission. I had my surgery Nov 2012 and no symptoms yet. I'm praying for a long remission. God Bless you all....
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I will agree with that unkind diesese, what just a little funny I'm mater plumber and can't fix my own plumbing. Have to rely on dr's who seems drag this along. He says I'm not as bad as others that maybe very true but this ain't no pick-nick.

I glad to here some are doing well after awhile come remission. There are many kinds of diseases with that said this makes us relies just how valuable life is and we should never take for granite.
 
I just wanted to post this note for encouragement to everyone. I was on Humira in 2007 for 7 months treating my moderate Crohns with a PAINFUL fistula(Kevinsplumbing I can totally relate to your "bath" comment). I was in remission until late 2012 and am back on Humira because of this flare up since February 2013. I was also diagnosed with Eosinophilic esophagitis at that time. The stress from my job and building a new house initiated the flare. My Crohns is doing really well right now but I have now developed sever joint pain to my condition. Evidently, this is common in Crohns. My c-reactive protein is elevated so my Rhemy is keeping me on my current dose of Humira(injection every 2 weeks). But for the most part, my painful joints are my only complaint at this time! Hang in there everyone! There is hope!
 
starbynight said:
Water and Crohn's

Recently I started to notice that I'm dehydrated more than in the past. I've had Cronin's for decades now and have seen a rise in my creatinine level. My GP says she this is a common characteristic in her Cronin's patients. We who have the disease have more bowel movements which tend to be more liquid than the general population which means we lose a lot of water.

My thinking is that we need more water to flush out our kidney than the general population. If we aren't drinking enough water the results show up in a higher creatinine level.

What are your comments on this subject?
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I agree I had my large instine removed in 96 and have had to drink more water. I was first label UC now there saying I have crohns. There are someways I just don't drink enough and I feel it, then it will take hours to replenish what I'm missing. As plumber by trade we always flush the pipes after working on them. In our case to keep our body's supplied with fresh water can only help us.
 
Dmarie said:
I just wanted to post this note for encouragement to everyone. I was on Humira in 2007 for 7 months treating my moderate Crohns with a PAINFUL fistula(Kevinsplumbing I can totally relate to your "bath" comment). I was in remission until late 2012 and am back on Humira because of this flare up since February 2013. I was also diagnosed with Eosinophilic esophagitis at that time. The stress from my job and building a new house initiated the flare. My Crohns is doing really well right now but I have now developed sever joint pain to my condition. Evidently, this is common in Crohns. My c-reactive protein is elevated so my Rhemy is keeping me on my current dose of Humira(injection every 2 weeks). But for the most part, my painful joints are my only complaint at this time! Hang in there everyone! There is hope!
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Hi that's I look forward to a remission!!
My right foot has been bothering me I don't recall doing anything to cause this much pain when I walk at first there's a limp from trying to favor it as I walk I limp a little less then if it's a long walk much more tolarable to walk then I will either stop or sit and then it starts all over again. I've been thinking ask my GP not my GI about this but I better ask my GI first. Because I like my GP but when comes to UC or crohns he is over his head and admits that.

Thanks for encouragement we all need to look at it half full not half empty.
 
mish2575 said:
I've skipped my last two doses of Humira (yesterday being 2nd time) and (God I hope I'm not jinxing it) I think I may have less mental issues. . .

*fingers crossed*
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I'm certain, now, that Humira was causing ever increasing depression for me. I have not had an infusion since Jan 27th and I haven't been tearing up over nothing like I used to. I've had fights with my husband where I don't become an immediate blubbering mess and I've been clearer at work. :)
 
nikimazur said:
Wednesday will be my first maintaince dose of Humira. One month, and no improvement. I actually have gotten worse during this time (including a lovely ER visit Friday night). How long did you/your doc wait to see if it makes an improvement/ to keep you on it?
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You need to give Humira about 4 months to see if it works. I been on Humira for about 5-6 months and no improvement. I'll be switching over to Remicade, hopefully that will work out for me.

Goodluck to you and give Humira some time!
 
F.u.Crohns said:
You need to give Humira about 4 months to see if it works. I been on Humira for about 5-6 months and no improvement. I'll be switching over to Remicade, hopefully that will work out for me.

Goodluck to you and give Humira some time!
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Hi I was humira for 4 months every other week, and didn't see a improvement then went to once a week and have found that there is improvement they also started 6-mp just with in the last 5 days but saw improvement before starting. We plan this dosage for 6 wks if not getting any better they were to switch to remacade. Every body responds differently I hope this helps.
 
Hi all,

I have been on Humira for a year and a half, so far so good (ish), I find you need to be patient !

I just want to wish you all the best and hope that one day we will all be cured!!!!!
 
Colleen_S said:
Hi all,

I have been on Humira for a year and a half, so far so good (ish), I find you need to be patient !

I just want to wish you all the best and hope that one day we will all be cured!!!!!
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Hi Colleen wow sorry to here about the bad side effects on them drugs. I do agree we do need to wait. But as many already know when months go by and nothing changes I feel like reaching and grabbing the Dr and saying hello I'm in pain and your not helping. Do I need to fire you and search out another. That being said I have one of the best in this hospital I'm in. Then there old saying your better off with the devil you know, then the one you don't know. I was talking a friend she is a nurse and she asked me if they offered to use hyperbaric chamber? I said what. So I emailed my GI he responded saying yes with patents with much worse attive cases. He said it require 10-14 days to visit the hospital each day. The other key will your insurance cover it. No side affects it helps the fistula that we have. Humm let me see 10-14 days or 10-14 months of trying different meds to find what one will work, or mixing them up to find the ones that help. Oh yeah these med cause side effects to, some can't be fixed. When ever you have to go in and have blood work done every two weeks to monitor your blood isn't good drugs to be taken. I know it's important to follow this. But I'm all for more natural way of healing our body's instead of pumping full of poision!

Sorry amount rant there. It just drive me crazy to here there a better, and safer way of help us, but because it cost more for the insurance company they deside it better for us to experiment on drugs. Humira isn't cheap here in the states. My starter pack cost 30,000 US dollars that's 30 days. I just about tipped over when I heard that.

May we all heal quickly and look back at this a just bad ride and move on from this.
 
I started Humira in August 2013. I remember my loading day like it was yesterday. It took 2 nurses and my GI doctor to try and calm me down. I have really, really bad needle phobia so coming at me with 4 needles is not an easy task.
I did warn them ahead of time that I have really bad anxiety.
Anyway, I decided to take all 4 shots in my legs. 2 in each leg. There's just something about my stomach area and I don't like it being touched.

It hurt like hell on loading day and to be honest, it continues to hurt like hell now! For those just starting the med, I can tell you that its not the needle the causes the pain, its the medicine itself. I get a very intense pain at the site that lasts for about 3 min. During that time, I can't stand up so I usually check fb or something til the 3 minutes is up and I can regain my mobility.

I do not give myself the medication. There's no way I can put a needle in myself. Just seeing a needle coming at me freaks me out.

Ironically, I work in a dialysis clinic (LOL), so I have nurses that can give me my medicine.
 
Hi All,
My Humira has started to work, I am on a every other week schedule. No bleeding thank goodness, for the first time since September. I am now off of the Lialda and Prednisone. The Prednisone ironically cause me to be hospitalized because of hallucinations. Had to accelerate the taper schedule. I feeling much better now.
 
Biologics support group. Humira, Remicade

I looked around for awhile but I couldn't find a support group for it so I thought I'd start one. The way a gi described crohn's treatments to me recently is that there is basically 5 ways to treat crohn's each one is a little more serious of a treatment.
1. Pentasa
2. Steroids
3. Immunosuppressants
4. Biologics
5. Surgery

What is worrying me is that I have gone up and up and up on the levels. For those of you that haven't seen my story on other threads I'll leave a short synopsis here and i can give you a more detailed one in a private message. Basically I had a flare last spring. Got better using prednisone. Doctor started weening me off and then I reflared. Started an immunosuppressant. Improved a little bit and then everything went bad. Ended up in the hospital for a week due to c-diff which I got because my white bloodcell count was dangerously low. My gi said next step is humira. But he wants a colonoscopy first. So I have to wait to start which is rough. The doctor wants me to ween off the pain meds that I was put on while in the hospital. They are of course worried about addiction...thing is I'm not addicted because I want to drive more than anything and I can't handle not driving and not being having my mind at full capacity.

I guess I was looking for advice about what to expect while starting humira, tips and tricks.
 
When I first started Humira, I went to a clinic and was taught how to use the pre-loaded pen with a nurse. Are you using the pen or the syringe? That changes what kind of tips to give you a little bit. Also: will you be trained before, too?

Before injecting, I leave out my pen for at least half an hour because the medication itself hurts when it enters your system. It's not as bad when it's warmer.

You can inject either an inch/two inches left or right of your belly button, or in your thighs. I always inject in my thighs because I'm a bit protective of my stomach. :p But if you do the top of the thighs I don't find it hurts as much. Also remember to pinch the skin and hold it while injecting.

Some people try to numb their injection area, and others are fine. It may hurt for a little while afterwards but it fades.

If you find the injection site gets raised and red (and itchy) that's a reaction about 10% of people on Humira get. It's not necessarily indicative of an allergic reaction. I had a test done recently and I have no antibodies to Humira, but still get that injection site reaction.
 
Oh, also, if you do get an injection site reaction: you can take Benadryl before and after you inject to help. It doesn't prevent it from happening for me, but it does at least make it last a little less long.
 
I can't take Benadryl because it makes me really combative lol. And I don't know yet about if it's syringes or the pen. I haven't been taught yet either. I don't even have the medication yet. I won't start till sometime after my colonoscopy that I have on Tuesday. Which one do you prefer syringes of the pens?
 
I do what Ocean says re getting pen out, using a cold pack. I always jab into my belly. I've been in humira coming up to two years in may. It took 3 months to reduce the flare and ulcers in my small vowels. But we got there.
 
Over the years my diet has changed. In terms of Crohn's I avoid a lot of raw vegetables, especially lettuce. Cooked veges I avoid brassica family, onions. I do eat a lot of yellow and orange veges. I eat mainly white meat and red on occasion. While I was recovering from ulcers I ate a fairly low residue sloppy diet so it was easy to get thru my system.
 
My last fecal calprotectin test was 9. This is fab news. So I am not likely to flare in next 12 months. The down side for me is my Reflux disease is back real bad and I have a shit load of tests to do before they decide to operate or redo my Nissen fundoplication.
 
LCATC945 said:
I can't take Benadryl because it makes me really combative lol. And I don't know yet about if it's syringes or the pen. I haven't been taught yet either. I don't even have the medication yet. I won't start till sometime after my colonoscopy that I have on Tuesday. Which one do you prefer syringes of the pens?
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Oh! That's strange. Maybe ask your GI about if there's an antihistamine you can take other than Benadryl?

I've tried both the syringe and the pen and I'm much more comfortable with the pen. I can't look at syringes when they go in, and when I had a nurse administer it for me with syringe, she went very slow. Like I said before: the medicine itself is what really hurts, rather than the needle. So it was excruciating to me. Since then, I've used the pen every time because it doesn't bother me nearly as much and I can actually use it myself.

Good luck on your colonoscopy!
 
Thank you and I'll be fine. I don't like antihistamines. I still have yet to have it at all so I don't know how I'll react to it.
 
During my colonoscopy today I had several inflammatory polups removed and biopsied. Should have results by Friday. Will try to start him on Humira when I see doc in a week to 10 days. If that doesn't work, I will need a slight bowel resection, but probably will not require a colonostomy unless damage gets worse. And the doc didn't give me any more pain meds. So once I'm out I'm out. Which will be the next couple days. I'll stop before I run run out just in case I need one for a rainy day. But being off is going to be rough... So once again I am left waiting...and suffering...
 
Yeah. Well I have to wait...like always... But now I have to wait without pain meds.


I know pain meds are addicting. I'm not anywhere near addicted. It's just it makes the days bearable.
 
I know what you mean. My pain at moment is stomach due to reflux disease and pain needs to be managed. A, cause it hurts, and B cause it puts my glucose levels up as well as my blood pressure. It's hard at times to get the pain meds we need. Pain is do wearisome.
 
They just don't want me on the pain meds even though they help. I've been able to get by...but I'm taking slightly over the recommended dose of Tylenol to do so. Which isn't good. I get my biopsy results tomorrow...hopefully... And I still have to wait till next week to find out for sure if I'll start humira. I'm just sick of having to wait all the time. It's just wait wait wait. Everytime to start new treatments
 
Saw doc today. Polyps they removed during the colonoscopy were benign. I have to set up a CT scan and I have to get a bloodtest today. I have to get the bloodtest done before I can start humira. But I will be starting it. And there's a boat load of info on it. I'm not looking forward to it. But I'm just glad I'm finally able to get the ball rolling. The ct scan will have to be scheduled but I don't necessarily have to have it done before I start humira. Dr. Wants me to drop down to 30mg of prednisone after I get my started dose of humira. All the polyps were benign but all my issues are in the small bowel. My colon was fine. Will start humira in the next week or two.
 
You are going to buy me new rear struts for my car if it turns out being bad...riiiiiight??? Jk thanks I know it won't be. I'm used to needles. Just haven't done one myself yet
 
I did my first 4 loading injections with the Humira pens last week. The anticipation was worse than actually doing the injections. I did receive instructions from my doctor's office and there are some good videos to watch and give you an idea of what to expect.
 
Hi everyone, Thought I would introduce myself.

I started Humira in Sept/Oct timeframe. So I am still relatively new to this. I have been in and out of hospital over the last year with a blockages and flair ups. Would love for things to settle down already and stay off the prednisone. My most resent trip to the hospital had me stay for well over a week as the prednisone was not working to open things up again. I am seeing the surgeon again on the 7th of April and if things have not improved or I end up at the hospital again it looks like they are going to go ahead with surgery. I have been told that I may have started Humira a little too late with all the scar tissue I have from 2 previous surgeries. My new specialist was super surprised that I had gone 7 - 8 years with no medication from the last surgery. Guess I was a lucky one somewhat as now this is ending my career in the Military. That in itself is a whole new thread lol.

I do have a question for you all. Does anyone else have problems with their sinuses since starting Humira? Seems I have a sinus infection that doesn't want to go away.
 
I started Humira in early September of last year and I have been experiencing many constant sinus symptoms since then--not actually infections, but stuffy/runny nose, post-nasal drip, more headaches, etc. My GI said that I just have to live with it, as I'm already on allergy medication.
 
mousesjca: Some people do report sinus problems with Humira, so that's a known reaction some people get.

Sorry to hear about the toll on your career, but hope at least now you can get your health in order!
 
I have never had alergies, been on Humira a year next week. I have in the last two months fought sinus issues as well as my eyes being real runny. I assumed it was from Humira, now reading this I'm guessing it for sure is. It is the only side effect I have outside of when I first started I did experience some headaches, but luckily that did not last long.
 
Hi All, has anyone else had problems with increased triglycerides since being on Humira? My triglycerides used to be below the normal limit for many years then after i started Methotrexate and Humira they went slightly higher than the upper limit of normal. I have now stopped methotrexate but increased the Humira to weekly and my triglycerides have now doubled from last September to now. I have not gained any weight during that time and my diet is about the same so I'm thinking it must be the Humira???

I did read on the US FDA website that 7% of those taking Humira bi-weekly have hyperlipidemia as an adverse effect.
 
Hi!! I just started Humira on Friday!!! I was just diagnosed 1/2014 so this has been a very quick process. The 4 loading doses were miserable, but I'm sure tehy will be worth it!! I noticed the very next day that a lot of my joint pain I had been experiencing had subsided. My stomach is still cramping but I already feel like their may be a little improvment. I'm super stoked to see how it all turns out!!!
 
forum contributor said:
Post #2, EC? Welcome!! :D

Well, here's where Katiesue thinks I'm insane. I think the legs hurt like a mother, and she thinks that's where the shots hurt the least.

I've been on Humi now for 9 weeks. It's getting better for me doing them in the stomach... I've only done the thigh once (never again - you may have good luck though!).

I haven't had any side effects that I've noticed.

Let us know how it all goes :)
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My doctor suggested I do it in the stomach as I have more day there than on the thighs, and he was right, stomach never really hurt me much.

2
 
I start Humira in next couple of weeks after reactions to previous meds. Feeling quite anxious about the side effects and about it hurting! Hope it goes ok will start Methotrexate as well! Glad I found this thread.
 

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