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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

??
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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 *** 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 **** 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.
 
Took my loading dose today. I'm really hoping it works well. The pain the shots gave me wasn't too bad really. I thought they would be much worse than they were. Then again the anticipation has always been much worse for me.
If anyone is frightened by them, with just starting them try not to be. It really wasn't bad. It burned a bit going in, but I'll be able to do the one shot every two weeks easy.

How have others here done on it? I've been on remicade a long time ago and did really good on it, but never been on humira before.
Take care all :)
 
It sounds like you had a pretty good experience with them, which is great! Are you using the pre-loaded pens, or syringes?

And the burning going in is pretty normal. I find it's actually from the medication itself rather than the syringe.

I've done really well on Humira, and it's kept me in remission without any problems. :) My GI still wants to re-add an immunosuppressant into the mix because of the severity of my illness before, but in the meantime I've been fine. It's also done wonders for my fistula, which I can't get over.
 
No it wasn't bad today. I did try a shot in the top of my leg that hurt quite a bit more.lol
I wont be doing that again, but I did want to see just how bad a shot in the muscle would feel. The fatty part of my inner thigh was much better.
I am very hopeful that I do well to be honest, by the way I haven't had any side effects so far and I would guess if I were going to I would have. At least I hope.
 
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Humira has worked very well for me, no side effects other then sinus issues every now and then.
Good Luck!
 
I actually got sent into flare awhile back, from a combination of a birth control I was trying and taking too much naproxen sodium when I didn't realize it was bad for me. I was still diagnosed as having UC back then, and was on Pentasa and had a really passive GI. He just kept throwing prednisone at me but every time I'd get my taper low enough my symptoms would just get worse. I eventually asked him about Remicade, which he put me on with no follow-up. It turned out I was highly allergic to it, and landed myself in the hospital because I just kept getting worse and developed a fistula.

I switched to a different GI, and the fistula development meant my diagnosis was officially changed to Crohn's. I stayed on Remicade a tiny bit longer but it did nothing for me and we knew I had super high antibodies to it, so I stopped it and went on Imuran, then added Humira. By the time I was put on Imuran, I was already in remission after a long hospitalization, terrible antibiotics and a brief course of prednisone/solumedrol.

Humira I already got tested for, and I have no antibodies to it and have been responding to it really well. I can't tell how beneficial it would be in flare because I haven't been in one since, but I assume it's what keeping me in remission at this point. :)
 
Thank goodness your in remission. I've never had a fistula but haven't heard good things about them. I have an illiostomy which is permanent. People think omg but they have no idea how much better my quality of life is. I feel so much better with it. If I had only one thing to say about it, it would be that when I turn over in my sleep and I can't believe the darn thing is full of air. Lol.
 
Stephen McConnell said:
Thank goodness your in remission. I've never had a fistula but haven't heard good things about them. I have an illiostomy which is permanent. People think omg but they have no idea how much better my quality of life is. I feel so much better with it. If I had only one thing to say about it, it would be that when I turn over in my sleep and I can't believe the darn thing is full of air. Lol.
Click to expand...

I can't say I'd ever recommend a fistula to someone, no. :p But I can at least recommend good medications for healing one as a result!

And that's great that you've had such improvement with the ileostomy! I can see why people would be a bit stunned to hear about it, but I've heard about how much of a difference they've made for people and that's wonderful.

Haha, yeah, I'd imagine sleeping with it could sometimes get a bit difficult. Do you find maneuvering with it difficult at all otherwise?
 
Oh yes. Very much so.
Once I empty it I'm good for awhile. Shoot I don't even know it's there half the time. ONLY when it's empty. Now once it starts to fill up then the dang thing swings alot and you notice the weight of it the more full it is. Over all I don't have any complaints. It was either this or die so it really was a no brainer.lol
to be honest tho I am very self conscious of it as if EVERYONE can see it say when I'm grocery shopping. Realistically tho I know it's just a small bump in my shirt.
 
I'm lining up to start Humira in the next couple of weeks. Glad to have this place to read through. Seems like the first doses are bad for some and not others. What are the most common initial side effects?
I was just diagnosed in early Feb so this is all fairly new. And sucky. :(
 
Really for me I haven't noticed any side effects. I am really worn down today. I took my four shots yesterday. Other than that I really don't see or feel anything. But I am exhausted today. I've read other forums and I think this is pretty normal.
I'm so sorry your not doing well. Having crohns is always different. My stories would only scare people to be honest. But mine got very bad. I've seen sooo many others that haven't gone through what I have.
I am thankful to god for being on the right side of the grass tho.lol
I've heard alot of very good things about humira.
Just don't give yourself a shot in the top of the leg. It hurts more. Go with the inner thigh.
I am bull headed and had to try it just to see, and I found out.lol.
over all the shots don't hurt really any more or less when you give yourself one. The medicine does burn some but like I said it wasn't bad for me.
I hope you do well on it, and keep us posted on how your doing.
talk to ya later. Don't hesitate to ask me or anyone else any questions you have. :)
 
Nancye50 said:
I'm lining up to start Humira in the next couple of weeks. Glad to have this place to read through. Seems like the first doses are bad for some and not others. What are the most common initial side effects?
I was just diagnosed in early Feb so this is all fairly new. And sucky. :(
Click to expand...


My GI explained that people either have it work for them or they don't, and that side-effects don't really happen. Humira is made from a human protein (unlike Remicade, which is mouse protein) so people aren't as likely to get reactions.

I do get injection-site reactions, but I have zero antibodies to Humira so it doesn't mean you're allergic to it or anything. It's just a raised, itchy rash that goes away. About 10% of people get it.
 
NO side effects, besides a little tired the day after the first quadruple shot.

I inject in my stomach, and have no signs there except for a little red spot which disappears within a day or so.
 
I had an improvement within 2 weeks of first dose, but it is different from person to person, I started a month before with prednison and pentasa, which helped, but best improvement came 2 weeks after first dose humira.
 
Generally biologics are pretty fast-acting, which is one of their advantages. But sometimes it does take longer in some individuals. For me Humira worked instantly, though!
 
Wow, I'm glad that biologics have worked so quickly for others! For me, it took 6+ months for Humira to begin working, but then again, my Crohn's is gastroduodenal, and it was pretty bad. None of the prior meds worked for me, so I wasn't on anything prior to starting Humira. My condition is still far from perfect, but it's as good as my GI and I can get it. :)
 
No side effects here. Remicade is a faster acting Biologic than Humira, which is why most docs pick Remicade first, that & it had a head start in its usage. We are about a week away from month 6 and not kicking in so far. Just waiting on the antibody test and drug level test to decide if we are dropping it or increasing it. Its a great drug if it works for you, and I much prefer a quick needle over giving up 1/2 a day for an infusion.
 
I hope that Humira works out in the end! I chose Humira over Remicade because of the convenience of being able to do it from home. I'm actually glad that I didn't know it would take this long to work, because if I had, I would have gone with Remicade. Now, however, I am glad that I'm on Humira.
 
I don't think that Remicade is faster-acting than Humira, actually... Humira acted immediately for me, whereas Remicade didn't do anything until I was five months in, and then we found out I had such high antibodies I had to switch anyway. So I think it's more an individual thing.
 
Could be an individual thing, I just remember when we were deciding over Remicade or Humira our doctor had suggested Remicade because results showed it worked faster than Humira. It could have been her own results versus clinical results, I will have to ask.

Personally Remicade worked faster for the symptoms, but Humira did more actual healing in the same time period. Then again we have never done Humira without methotrexate, but when on Remicade, had no other combination medication with it so its hard to say what worked better. After the blood test results we might just be changing again anyways so no time yet to get comfortable. Hoping for a steady course of treatment soon!
 
My doctor said both had very good results, but we chose the self-service-pen with humira, so I didn't have to travel 2 hrs to the hospital every other month.
The costs are about the same I think, but for some insurance might have something to say.
Fortunately I get Humira paid, as it is sooooo expensive, still working on imuran, but that should come through soon as well.
 
theOcean, I was curious to see if there were studies on 'which one is faster/better' and there is no study! I did find this http://www.medpagetoday.com/MeetingCoverage/ACG/42277 & this http://thegreatbowelmovement.org/remicade-vs-humira-showdown/

I like the great bowel movement article thoughts on 8 weeks of treatment over 52 weeks of treatment on Humira/Remicade. Wonder if they will ever test the drug directly head to head. Either way I am just glad there are options and am looking forward to the new ones coming down the pipe soon, vedolizumab, tofacitinib, & ustekinumab. Have a long way to go before they are even approved for Pediatrics.
 
SupportiveMom said:
theOcean, I was curious to see if there were studies on 'which one is faster/better' and there is no study! I did find this http://www.medpagetoday.com/MeetingCoverage/ACG/42277 & this http://thegreatbowelmovement.org/remicade-vs-humira-showdown/



I like the great bowel movement article thoughts on 8 weeks of treatment over 52 weeks of treatment on Humira/Remicade. Wonder if they will ever test the drug directly head to head. Either way I am just glad there are options and am looking forward to the new ones coming down the pipe soon, vedolizumab, tofacitinib, & ustekinumab. Have a long way to go before they are even approved for Pediatrics.
Click to expand...


That's interesting! Although both of these are for people with UC... I wonder what it would've been with people with Crohn's, instead. I know I'm super excited about the new options coming out, too.

I hope there are more pediatric options approved, as well. I remember reading posts on your daughter and I would love to have her find something that works.
 
I know this is probably a redundant question but I haven't seen much.
Do others notice beig exhausted the day of the loading shots, and the day after?
I'm also assuming that with the next shots being only 2 then 1 every other week this will get better.
 
I didn't, no... I know some people talk about being exhausted the day of their injections, though. It seems I'm pretty lucky and don't react that way to any medications.
 
Stephen, I was quite tired after the first loading shots, the next shots were easier, notice only that I'm a bit short of breath the day after my shot.
 
Tb test came back negative. Just waitin to hear back from the doc. Will prob have to call on Monday because I didn't have time.
 
The first few doses I would get a little tired, but nothing that interfered with my day. Since the first few doses, no real side effects. Been on humira for just over 3 years.
 
Sounds like we are on the same timeline lcat945. I'm just waiting for the Rx to come through. Also trying to decide which day I can lay low in case it wipes me out.
 

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