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Thanks so much for your reply. I thought it had to be injected immediately it comes out of the fridge> Do you take it weekly and has it worked for you? Many, many thanks.
 
lizalou said:
Thanks so much for your reply. I thought it had to be injected immediately it comes out of the fridge> Do you take it weekly and has it worked for you? Many, many thanks.
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I took the initial loading dose (4 injections). Then one week later 2 injections. Now I take it every-other week. I have been on it for about a month and a half. Ive noticed a difference. I feel better most days but I still have some bad days...but not nearly as often. My doc says it may go away completely as I keep on the drug.

Yes its ok to take the Humira out of the fridge for a little bit. Just let it warm a little. Nothing hotter than room temperature or so. It should still be a little cold, just less chilled than right out of the fridge.
 
Starting Humira this week. Going straight to Humira and not in combo. Terrified of the initial injections now even more than the rare risks. Definitely taking the pens out early before going to the clinic to get them done.
 
Thanks so much! I am so pleased to hear of your success with it! Great news! And thanks for the tip regarding leaving it out of the fridge for a while, I just did that and it didn't sting quite as much as usual.Good luck for continued success!
 
I'm a year in two weeks on Humira, and 3 years on Aza, me poor immune system has took an battering so it has, lol, I shouldn't be laughing ...... :p

My bloods, except for one time when my white blood cells were a bit low, have always being normal, the rare side effects are really rare, as 0.04% and 0.06% on combo therapy, so try not to think about them too much!!
 
I just started noticing a trend that concerns me. I have been getting bad migraines and stomach flares exactly 2 days after my humira doses. Every other day I am fine.

The thing is, I also have been eating pizza the night before the migraine and stomach flare. But I dont think pizza would cause the migraine.

Any ideas what the heck is going on?
 
Going onto Humira!

I saw my gastroenterologist during the week, I gave him my diary which I've been keeping for a week and he is sending it along with all the application forms to Medicare for permission to put me on Humira at the cheap prescription rate. Apparently it takes about 10 days to get approval and then you have to do periodically proved that the drug is actually doing you some good to continue. I'm hoping that I get approved, I been reducing my prednisolone progressively hand down to 3 mg per day, however I can feel the inflammation in my gut increasing. Last night and this morning it was pretty bad and I had to take two Panadol osteo tablets.

I think I'm going to move myself back up to 5 mg per day just to get away from this nagging pain in my gut. It seems to me that my information is much worse now than it was before I received my Crohn's diagnosis and started taking various medications. Sometimes I have to wonder if the medications which hold pain down don't actually make the disease worse in the long run. I know that the medications worked wonders some people but what about the others? Anyway I'm hoping that Humira will be better and will get my gut inflammation under control, or hopefully even eliminate it.

Not looking forward to the loading doses though - wish me luck!!!!!
 
I have blood work done once a month.

@ Billk78 - Headaches are listed as a side effect for Humira. As for the stomach I'm not sure. How long have you been taking it? Maybe it needs more time to do its thing? No harm in letting your GI know about it.

@ Gra - Good luck! I had to wait for approval from Medi-Cal. They hate paying for anything but it was approved. I don't have to show them proof that its still working though. :/ That's lame. You think if it wasn't then you'd be taking something else. :p
 
It looks like I will be joining your club soon. 3 good years on Remicade. I built the anti-bodies. This flare is really bad.
 
I find it much easier to do the injection when the weather's warm- does anyone else get this? Just doesn't seem to hurt as much. I had to do mine in the dark the other night when the power went out. Here's Metric assessing the situation (he likes to play with the caps afterwards) :)
 

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#2asap said:
It looks like I will be joining your club soon. 3 good years on Remicade. I built the anti-bodies. This flare is really bad.
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Hope Humira works for you! I was on Remicade for 7 years before the switch to Humira. Humira worked great the first time I used it.
 
Billk78 said:
I have been having a helluva a time lately. Thought it was just me. I use the pen and it seems to be getting more difficult to pierce the skin. First off, it hurts much much more, both hittting my skin and going in and burning. Second, I have had some leak out the last few times despite holding the pen there for more than 10 seconds. Finally, Ive been getting little round mosquito type bumps from it.

ANy suggestions? Was thinking of switching from pen to syringe. Anyone have luck with that?
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I was having similar problems when I used to ice the area before injecting, so i stopped and no swelling/bumps after. Almost like the ice makes skin harder to inject into or something.
 
Lost Kitten- Beautiful cat you have there! Wish we could have a cat, but my dog doesn't like the idea.
 
lost kitten said:
I was having similar problems when I used to ice the area before injecting, so i stopped and no swelling/bumps after. Almost like the ice makes skin harder to inject into or something.
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Thanks. I dont even ice it. I leave it out of the fridge for like 15 minutes. Been doing it in my thighs. Perhaps I can try stomach....a little nervous about that though.

The idea of a hot shower before might help.
 
lost kitten said:
I have the pen out for half an hour, maybe it's still too cold going in?
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Perhaps. Next time I will leave it out longer and take a hot shower. When I first started using it I was doing everything the same....just lately been having these issues.

Have you tried the syringes?
 
Billk78 said:
Thanks. I dont even ice it. I leave it out of the fridge for like 15 minutes. Been doing it in my thighs. Perhaps I can try stomach....a little nervous about that though.

The idea of a hot shower before might help.
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I always do the stomach. Seems like the thigh hurt so much more to me.
 
Dukeis said:
Lost Kitten- Beautiful cat you have there! Wish we could have a cat, but my dog doesn't like the idea.
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Thanks, he's beautiful until he starts kicking things around at 5:30 to wake me up! What kind of dog do you have? I'm lucky my cats and dog are pals :)
 
Billk78 said:
Perhaps. Next time I will leave it out longer and take a hot shower. When I first started using it I was doing everything the same....just lately been having these issues.

Have you tried the syringes?
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I get the syringe, but I don't give them to myself. My wife is a nurse so I have her do it. I have done the pen in the past though. Different insurance company back then and all they would pay for was the pen. I think the syringes are actually cheaper.
 
lost kitten said:
Thanks, he's beautiful until he starts kicking things around at 5:30 to wake me up! What kind of dog do you have? I'm lucky my cats and dog are pals :)
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I have a Border Collie. He has been very sick lately. He went out and got himself bite by a rattle snake on his face. He's getting better now, but will have a nasty scare.
 
Billk78 said:
Perhaps. Next time I will leave it out longer and take a hot shower. When I first started using it I was doing everything the same....just lately been having these issues.

Have you tried the syringes?
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Your body's probably just sick of getting jabbed every fortnight :p I hope it works better next time, let us know how it goes. I've only used the pens.
 
Just want to pop in and say that I'm 14 months on Humira, for recurring abscesses caused by a fistula at the edge of my back passage. :O

And I'm 38 months on Imuran. Life is good. Life is really freaking good, it's got to the point were I've had to remind myself I do in fact have a chronic illness as I've been feeling "pre-Crohns me" for the past few years bar the odd abscess, but they haven't re-appeared since I started Humira.

Long may it last!! haha, I'm getting greedy now! :p

Hope y'all are doing awesome!! :D
 
Well pleased to hear that IAmTheWalrus. I'm nearly 24mths into Humira, had some infections & one more surgery since starting but IMO the damage was done before I started on it.
Regards
Grant
 
I changed from Pen to Syringe, it hurts less IMO. Curiously I have more fat on the rh side of my belly & its a comfortable place to inject into. On my LH side there isn't so much & it does sting slightly but nowhere near as much as with the pen.
Regards
Grant
 
Hello! I am new to this forum, but I am glad to know that there are a group of people with whom I can relate with Crohn's and Humira. I have a question for everyone taking Humira: have you noticed an increase in the neutrophil count in the blood work you have drawn since you have ben on Humira? My levels are "high" compared to the average range, but I do not believe they are abnormally high or cause for concern.
 
RXTECH81 said:
Hello! I am new to this forum, but I am glad to know that there are a group of people with whom I can relate with Crohn's and Humira. I have a question for everyone taking Humira: have you noticed an increase in the neutrophil count in the blood work you have drawn since you have ben on Humira? My levels are "high" compared to the average range, but I do not believe they are abnormally high or cause for concern.
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Hello and welcome to the forum! My last blood work which was about 3 weeks ago my neutrophil count was low as well as my overall white cell count.
 
Thank you for the response! wow. my WBC was normal but by RBC was low as well as my hemoglobin. Interesting. Has your doctor commented on your blood work either way?
 
Hello newbies! If you saw my post a page back, you can see I've been on Humira for 14 months and Imuran for 38 months without any adverse effects bar the odd rectal abscess but I've always been prone to them. (Even pre-Crohns, although I suspect the reason I got them as a teenager was undiagnosed Crohn's).

I was diagnosed with Crohn's in Jan 2009 and I can honestly say, I've never been seriously ill since I started treatment, in fact, I've rarely been sick (colds, flus, infections etc) since starting treatment.

P.S

I'm just back from a pub with my friends and I'm a little drunk! Vodka and beer will do that to me! Have a great life people, remember, don't let this ailment (I hate calling it Crohn's "disease" as it makes us sound like we are "infected", I call it, Crohn's ailment, even to doctors).

Live life, people.
 
russem2 said:
Hey there guys and gals, I am new to the forum but not new to Crohn's. I was diagnosed in 1986 and have been on all conventional treatments and have tried Remicade, which worked fantastic for about 2 years until i became sensitized to it. I just got out of the hospital last month after i had an enteroenterostomy because i had severe stricutres that caused an obstruction. I tried Humira after remicade but i only took the loading dose and 2 more shots after that (every other week). I didn't think it was working so i quit. I went to the University of Chicago Hospital this past weekend (awesome GIs up there) and they don't think i gave Humira enough time to work. Anyone else have any information on how long it took Humira to work for them?
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The GI's at University of Chicago know their stuff when it comes to humira and this disease. Did you see Dr. Hanauer, Dr. Lang? They are the ones are suggested that I go on the methotrexate Humira combination. I just had my starting dose two days ago. So it's too early for me to say. I guess I'm in Humira club
 
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Hi, I've been on it since May this year. My last pillcam showed that my disease has gone to mild now - it's still there but not like it was in April when I was real crook. It took a while to work for me.:biggrin:
 
Aura said:
Hi, I've been on it since May this year. My last pillcam showed that my disease has gone to mild now - it's still there but not like it was in April when I was real crook. It took a while to work for me.:biggrin:
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Hi Humira buddy!:thumright:
 
Emily said:
Hello fellow club members! Moving on up to Humira weekly. I'm one month shy of two years on it (oh my god time goes by so quickly). :thumright:
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My humira injections help me but only for short term, about 2 days after each injection. Thinking maybe I need it more regularly? What were the reasons that you are going to weekly doses? Was it hard to get approval to increase the dose from your insurer?

I am in Australia, medicare pays all but $35 per month, might have a hard time convincing them I need it more often.

Any and all advice or ideas gratefully accepted.
Gra

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I'm wondering Why some are you there increasing your injections aren't on methotrexate to increase the potency of Humira. But that again I'm sure your doctors have a reason.
 
Scaryman said:
I'm wondering Why some are you there increasing your injections aren't on methotrexate to increase the potency of Humira. But that again I'm sure your doctors have a reason.
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That is an interesting thought? Tell me more. I started flushing on Methotrexate but my GI has mentioned it to me.
 
Aura, all I know is From experience that methotrexate breaks down the antibodies in your system and increase Humira potency by 30%. Only reason why i mention that is because you guys are doing different injection schedules then Abbott labs recommends. I was just wondering if your doctors had a reason for not putting you want methotrexate to increasethe potency. Everyone's situation is unique, there may be a reason why you're not I methotrexate.
 
Scaryman said:
Aura, all I know is From experience that methotrexate breaks down the antibodies in your system and increase Humira potency by 30%. Only reason why i mention that is because you guys are doing different injection schedules then Abbott labs recommends. I was just wondering if your doctors had a reason for not putting you want methotrexate to increasethe potency. Everyone's situation is unique, there may be a reason why you're not I methotrexate.
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Regarding anti-bodies, when I started Humira I expected to be took off Imuran, but my GI said that it can help with regards to my immune system building up said AB's.
 
I guess your GI felt you needed it. In my case I rejected remicade and felt the need to break down anti bodies. The fact that methotrexate is supposed to increase humira's potency is a bonus. In fact I just learned today humira is or was genetically engineered.
 
Hi guys,
I'm starting Humira next thursday four shots at the hospital at 11am, will I be able to go to school for 1pm? Imuran didn't work, parents are a little freaked out...
Oh and how long does the pain last?
Thanks, xx
 
Depending on your reactions you shouldn't be a problem going about your day. I had two 80 mg injections and I didn't have a problem. You might have some diarrhea. What other Meds are you on? If you're getting this arranges I noticed a pain for about maybe an hour but you can try numbing the injection area with ice first. As others have suggested it helps with syringe pain.
 
Hi I'm Garvan I was on Humira for a year didn't do me much good so switched it inflixmab... It's better gear although I did build up a great collection of used pens :lol:
 
Garvan said:
Hi I'm Garvan I was on Humira for a year didn't do me much good so switched it inflixmab... It's better gear although I did build up a great collection of used pens :lol:
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Hi Garvan, you can send the old pens back to Abbott free of charge if you call them.
 
Scaryman said:
Depending on your reactions you shouldn't be a problem going about your day. I had two 80 mg injections and I didn't have a problem. You might have some diarrhea. What other Meds are you on? If you're getting this arranges I noticed a pain for about maybe an hour but you can try numbing the injection area with ice first. As others have suggested it helps with syringe pain.
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I'm on Imuran and Entocort but moving onto Humira because it seems.i'm on the verge of a flare up!
 
If you feel a flare I'd switch to clear liquids for a day or so and see how it goes, contact your GI. We are here if you have any other questions.
 
Gra said:
My humira injections help me but only for short term, about 2 days after each injection. Thinking maybe I need it more regularly? What were the reasons that you are going to weekly doses? Was it hard to get approval to increase the dose from your insurer?

I am in Australia, medicare pays all but $35 per month, might have a hard time convincing them I need it more often.

Any and all advice or ideas gratefully accepted.
Gra
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I'm in a minor flare right now, and my doctor decided to increase the dose as Humira clearly works for me, so there's no need to switch meds, just dosage. He told me that about 50% of his patients on Humira end up weekly. It was easy to get it insured, my GI just wrote a new rx for a quantity of 4 syringes, and I still only have to pay $5.

I don't know how it works in Australia but I'd assume if your Dr. thought this would be a good way to go, he could talk to the insurance company to get it approved?
 
Hi Scaryman, I have been on methotrexate twice before but in combination with other medicines so it was hard for me to tell if it actually worked. This time was the only time I've been on it on its own and on it my symptoms worsened massively. Admittedly I only gave it 6 weeks (it can take up to 12 weeks I think to become fully effective) before I insisted I was put back on Humira. In the six weeks I was on methotrexate my arthritis in my left ankle worsened ( I was walking about like a penguin), I then developed arthritis in my right Ankle, my knee, my wrist and fingers. I had over 20 erythema nodosum, got episcleritis in my eye, mouth ulcers and had bad tummy pain and bad bowel motions, all this happened in only six weeks of methotrexate so my symptoms seem to come back very quickly if something doesn't seem to be workin for me. On the same note, if something does work my body seems to respond very quickly (had a very quick positive response to Humira). Atm im on both metho and humira but will probably try and stop the Methotrexate soon as it has made my hair fall out big time. Starting to get a bald patch on the side of my head! I understand tho that metho works very well for some ppl so please don't put too much weight on the fact it didn't seem to work for me!
 
I'm only trying to gather information on metho symptoms since I took a 25mg injection and passed out and needed to sleep it off for 4 hours. So ill be going to 12.5. A dose I can tolerate but still get tired. I don't have ulcers or hair issues yet. But humira and MTX supposedly work wonders so I'm going to give it a shot so I can get off the 40mg of pred that I've been on for 6 months. If I flare badly during the slow taper then as I e been told by a reputable top GI I'd need resection for strictures (3). I'm not sure why he rules out stricturplasty. But if and when that time comes it will all be evaluated then. Thanks for the letting me know.
 
Sorry to hear u reacted so badly to the bigger dose of metho. The day after I take mine I feel quite vomity, tired and it has caused the hair loss I mentioned. I got the tiredness badly the last time I took it and so had to take it on a Friday night so I could recover over the weekend before work. Are u on folic acid too? i Have upped my folic acid to 5mg three times a week to try to combat my side effects.
 
I take folic acid 3 400mcg pills a day every day. Everyone's dr. Seems to have differant script ion or advice on taking folic acid on injection day. I get blood work done so my local GI doesnt see a issue with it yet so I've been taking it every day.

I think it totals 1 mg a day.
 
Hi Guys!

Hoping that this post finds you all with hope for a cure for our ailment!

I've been on Humira since 8/14/12.

So far the gut is doing pretty good, only 2-3 bad days during that time.

Some weird rashes on palms of hands. Like severe dermatitis.

I went to dermatologist 2x. He's still not sure if its the Humira that's causing it.

Weird little bumpy, itchy pustules underneath the skin.
They itch, dry underneath the skin, open up and then peel.

Hate it! Never had it!

Anyone chime in!

Thanks for your replies, I would really appreciate it!

Carl
 
carlh425 said:
Hi Guys!

Hoping that this post finds you all with hope for a cure for our ailment!

I've been on Humira since 8/14/12.

So far the gut is doing pretty good, only 2-3 bad days during that time.

Some weird rashes on palms of hands. Like severe dermatitis.

I went to dermatologist 2x. He's still not sure if its the Humira that's causing it.

Weird little bumpy, itchy pustules underneath the skin.
They itch, dry underneath the skin, open up and then peel.

Hate it! Never had it!

Anyone chime in!

Thanks for your replies, I would really appreciate it!

Carl
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Have they did a biopsy on the pustules? The reason I ask I had some strange skin issues the first time I was on humira and they turned out to be histoplasmosis a fungal infection. There are also other fungal infections people can get when on anti-tnf meds and I'm not sure how they would present.
 
Thanks Dukeis!

I am going back to the derm doc on Monday. I will have him test for that fungus.

I have it underneath my foot. Not as bad, but still irritating.

I will get back to you in that.

What treatment did you use for the fungus amongis? ;)
 
The first thing they did for me was stop the Humira. Then I was put itraconazole for 6 months. Hopefully it is not something fungal and you don't have to stop treatment since it seems to be helping you. The dermatologist does know you are on Humira, right?
 
Hi! I will be starting Humira soon, so thought I would join the club! I have to say, I am a little nervous about the whole thing.
Has anyone done any traveling and had to take Humira along? How did that go? Do you just stick it in a cooler?
Also, how do you tell people about it? I would like some of my friends to know about Humira, but I am embarrassed...

Thanks everyone! Glad I found this group!
 
Kelseysmith said:
Hi! I will be starting Humira soon, so thought I would join the club! I have to say, I am a little nervous about the whole thing.
Has anyone done any traveling and had to take Humira along? How did that go? Do you just stick it in a cooler?
Also, how do you tell people about it? I would like some of my friends to know about Humira, but I am embarrassed...

Thanks everyone! Glad I found this group!
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Welcome to The club, they give you a traveling pack that has an ice pack that you can take with you for your pens. I wouldn't worry about it as I worried at the start myself but found tv easy enough. The hardest part is self injecting and depending how you tolerate at the injection site (can bruise or cause pain.)
 
I agree with Paul. If using the pen hold the needle in for 10 secs. Might be painful it does helping you take it out of the fridge and let it sit for 10 minutes prior to injecting.
 
Scaryman said:
Welcome to The club, they give you a traveling pack that has an ice pack that you can take with you for your pens. I wouldn't worry about it as I worried at the start myself but found tv easy enough. The hardest part is self injecting and depending how you tolerate at the injection site (can bruise or cause pain.)
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I have been told that for long flights you can get a long range ice pack from the diabetes foundation, which keeps the pens cold for longer than the one from humira makers.


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My only concern is getting them through tsa security and not wanting to get into a issue with the robots at TSA, because they'd think we are a security risk with the pen. They'd have a interesting time figuring its meds. Lol I might be worried over nothing but c'mon there was a post about someone going through a scanner at the checkpoint with their "appliance pouch". We have a disease not a security risk:(.
 
When I travel I have a letter from my doc - the main thing is getting insurance if you go overseas and making sure the airlines know what drugs you are taking. I have a list from my doc of what I take and normally my whole carry on baggage is all medication. When I travel I feel like I must come across like a person that sells medication for a pharmacy company
 
Hey guys,
Got my first four shots today at the hospital and I just wanted to reassure anyone starting it is really not that painful, I mean it is a needle but that's pretty much so I'm sure it's very much worth I mean I'm happy to be done with the handfuls of imuran and entocort every morning!!
 
Good on you Foodlover - it's great that you handled the loading dose so well. It made me remember mine - I had to have them and then go in for a colonoscopy. It is good to get started on it. I am so much better now than I was in April thanks to Humira and Aza and pred. I hope it works well for you too. :D
 
I'm in the club too!

Had my second loading dose x2 this weds following the x4 a fortnight ago.

For me the stomach is worse than my legs. For my second dose I did it at home and had the wife and our 3 and 6 yr old daughters as an audience. It stopped me swearing at least. Thankfully I don't find the pain too bad.

The good news is that I've just seen my nurse and it is working after only 2 weeks. My CRP is down to 11 from around 90 and my ESR is on the way down too. I'm also less anaemic. I just now need to get off the prednisolone and fingers crossed will get back to proper remission in the New Year.

Good luck to all
 
carlh425 said:
Hi Guys!

Hoping that this post finds you all with hope for a cure for our ailment!

I've been on Humira since 8/14/12.

So far the gut is doing pretty good, only 2-3 bad days during that time.

Some weird rashes on palms of hands. Like severe dermatitis.

I went to dermatologist 2x. He's still not sure if its the Humira that's causing it.

Weird little bumpy, itchy pustules underneath the skin.
They itch, dry underneath the skin, open up and then peel.

Hate it! Never had it!

Anyone chime in!

Thanks for your replies, I would really appreciate it!

Carl
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I have a problem with something that sounds similar known as granuloma annulare. I've only noticed it on my hands. My dermatologist tells me they are benign. I use hydrocortisone cream on them and it helps them go away.
 
Lately I've been getting small spots on the bank of my hands, sometimes red sometimes just itchy. Related? idk.

unfortunately humira doesn't seen to be working for me so far, except that I usually feel better for one or two days following each fortnightly dose. GI says it is not showing sufficient change on my blood tests either. If this continues, at the end of the current period, (8 weeks?), medicare will stop funding it, he says. makes me sad as I do feel a lot better those couple of days each fortnight, but why doesn't it persist? From what I read in these pages, it seems that people in countries other than Australia get a longer period to allow the trial to work - am I wrong?


2
 
Something amazing happened last night.I had my injection and it did not hurt!:ybiggrin::thumright: In fact I actually had to ask my wife if the shot was done! I did not feel a thing.:dance::dance::dance:
 
DougUte said:
Something amazing happened last night.I had my injection and it did not hurt!:ybiggrin::thumright: In fact I actually had to ask my wife if the shot was done! I did not feel a thing.:dance::dance::dance:
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That's fantastic!! But after over a year of them?? :yfrown: not sure if it's worth the wait lol! :p

I've been doing them for 9 (?) months and they hurt minimally with icing, leaving the syringe out, and injecting super slowly (over a couple of minutes). But I can feel 'em loL!
 
DougUte said:
Something amazing happened last night.I had my injection and it did not hurt!:ybiggrin::thumright: In fact I actually had to ask my wife if the shot was done! I did not feel a thing.:dance::dance::dance:
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Wow! That is amazing! Hope that is contagious to all of us that take these fire shot!
 
Hi ive been on HUMIRA for about two years now I find that if I take it out of the fridge 30 minutes before the injection it usually doesn't hurt at all I also tend to stick to the fatter parts of the stomach. Hope that helps.
 
I also leave out for 30 mins, and always use stomach injection, find that it stings as it's going in, but not too much, and very little it or no pain after that. (I don't ice the area first)

2
 
DougUte said:
Something amazing happened last night.I had my injection and it did not hurt!:ybiggrin::thumright: In fact I actually had to ask my wife if the shot was done! I did not feel a thing.:dance::dance::dance:
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DOUG! ME TOO! That's actually so weird! Last night I did mine and I was shocked and very impressed, the regular slight pain wasn't there, even though I had only cooled it a minute or two.
Maybe after so long it just stops being noticeable? It's almost my 2-year Humira anniversary.
 
Emily said:
DOUG! ME TOO! That's actually so weird! Last night I did mine and I was shocked and very impressed, the regular slight pain wasn't there, even though I had only cooled it a minute or two.
Maybe after so long it just stops being noticeable? It's almost my 2-year Humira anniversary.
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Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... **** just got real.
 
IAmTheWalrus said:
Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... **** just got real.
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Lol I love "Humiraversary"!! And I usually warm it up for much longer plus I use the syringe so I just rub it in my hands for a while to transfer some heat...I just sorta rushed through it this time. But warming it up is truly the trick to reduce the pain.

And wow, over a year with Humira and over three with Imuran. I love when maintenance meds do their job, that's great!
 
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
 
IAmTheWalrus said:
Happy Humiraversary! ..... ugghhh ..... that was a terrible play on words.

Regarding the pain, I leave my Humira out for a little over an hour, and it does wonders. Also, after using the disinfected wipes, use a bit of tissue to wipe it away the residue so when you inject, it doesn't go into the site and cause excruciating stinging .... happened to me and it was terrible.

Man, 15 months on Humira and 39 months on Imuran .... **** just got real.
Click to expand...

You're supposed to wait for the area to dry after using the alcohol wipes :p
 
izzi'smom said:
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
Click to expand...

I wouldn't think so, I've been leaving it out for an hour, sometimes I'll forget so it could be an hour and a half, been doing that for about 7-8 months now. I even rang my IBD nurse and pharmacist just to be sure and they said it would be no problem as long as it's room temperature.
 
Hi everyone, new member here (just got my loading dose - 4 shots WHAM!) with a few random questions that I hope old-timers may be able to help with.

1- What happens if you freeze the pens and how, if at all, can you tell if you have? I think I may have accidentally put my second dose in a refrigerator that was colder than recommended - though I do not know for sure if they froze or not as I moved them to a less cold area soon after I realized the temperature of the colder zone.

2- Is anyone on a dose that is higher than 40 mg (i.e. one pen/syringe) every 2 weeks? And/or at a frequency that is sooner than every 2 weeks?

I'm sure I'll have more questions as I continue to use the drug, but if anyone can provide their experience/insight on the above, it would be greatly welcome and appreciated.
 
scoutfinch said:
Hi everyone, new member here (just got my loading dose - 4 shots WHAM!) with a few random questions that I hope old-timers may be able to help with.

1- What happens if you freeze the pens and how, if at all, can you tell if you have? I think I may have accidentally put my second dose in a refrigerator that was colder than recommended - though I do not know for sure if they froze or not as I moved them to a less cold area soon after I realized the temperature of the colder zone.

2- Is anyone on a dose that is higher than 40 mg (i.e. one pen/syringe) every 2 weeks? And/or at a frequency that is sooner than every 2 weeks?

I'm sure I'll have more questions as I continue to use the drug, but if anyone can provide their experience/insight on the above, it would be greatly welcome and appreciated.
Click to expand...

If you freeze it, the active ingredient is deactivated. The pen has a little window, look through it and turn the pen upside down to see if liquid flows or not. If it's frozen DO NOT use it, even if it thaws. Call the pharmacy for a replacement! Wait since this already happened...were other liquids in that one refrigerator still liquid? If so, you should be fine. Do you remember if the temp was above freezing point? (32F or 0C)

I just started taking 40mg every weeks, though I had been doing it every 2 weeks for almost 2 years. I know some other people are doing the same! It seems to usually be people who respond well to the drug, but after a while of success start noticing symptoms again. That's how it is for me anyway.

Welcome to the club! :)
 
izzi'smom said:
From what I understand from the pharmacy that ships my Humira, leaving it out for over 40 minutes deactivates the medication and is not recommended by the manufacturer. I leave mine out for 20. :)
Click to expand...

Surely when you inject it under your skin, it must warm up to body temperature, 98 degrees almost immediately - why does this not deactivate it, I wonder?

2
 
HUMIRA works by binding TNF and helps block the process of inflammation in the intestines that is caused by Crohn's disease. Because TNF blockers, including HUMIRA, affect the immune system, they can lower the ability to fight infections and may cause other serious side effects. HUMIRA needs to be stored in a refrigerator (2°C-8°C/36°F-46°F) in its original container and protected from light until it's used. HUMIRA should never be put in the freezer or frozen. Do not use HUMIRA if frozen, even if it has been thawed. Refrigerated HUMIRA remains stable until the expiration date printed on the prefilled syringe or Pen.
 
So ...... yesterday I woke up during the morning with pain in my bum, I shook it off and went back to bed, woke up around 8, feeling like I was coming down with the flu, just a horrible feeling, still have it fyi, rang my GP and told them what the deal was, pain in my backside, I have a couple of fistula's back there, feeling tired, weak, no appetite and now I'm on Flagyl, yuck, and Cipro because I'm 100% certain, and so is my doctor, that I'm showing early signs of an abscess .....

So that's four Christmas's in a row .... FOUR, that I've had abscesses. No wonder I hate this time of the year, I've mentally anchored Christmas with pain and anti-biotics. :lol2:

Hopefully these tabs clear it before it gets any worse and I can enjoy Xmas! Always early to mid December ... it can't be a coincidence. :shifty:
 
carlh425 said:
Hi Guys!

Hoping that this post finds you all with hope for a cure for our ailment!

I've been on Humira since 8/14/12.

So far the gut is doing pretty good, only 2-3 bad days during that time.

Some weird rashes on palms of hands. Like severe dermatitis.

I went to dermatologist 2x. He's still not sure if its the Humira that's causing it.

Weird little bumpy, itchy pustules underneath the skin.
They itch, dry underneath the skin, open up and then peel.

Hate it! Never had it!

Anyone chime in!

Thanks for your replies, I would really appreciate it!

Carl
Click to expand...

I have been on Humira for over a year now. About 4 months into treatment I started seeing the exact same thing that you describe. I had it on my feet, my wrists and my palms. Little pimple looking things, that dry out and peel away. Have been seeing a dermatologist for almost a year now because of it. She claimed it is a type of psoriasis and that it is caused from Humira. Since Humira is supposed to help with psoriasis it is very rare. Found that only approx. 4% of Humira users will start getting psopriasis. She gave me a bunch of creams and ointments. None worked......stopped taking them. The pimples are completely gone and now looks more like dry scaley skin. My hands and wrists seem to clear up and re-appear all on their own. My feet are till the same though. Hope this helps!!
 
I have officially been taken off the Humira and start Remicade on Tuesday. After being on Humira for 2years this is def going to be different. Keeping my fingers crossed. :)
 
I've taken Humira for 2+ years. Initially, the doctor prescribed it to address my Crohn's disease/fistula seen in CT scan and weight loss. After initial dose, I started to gain weight and the next CT scan did not show evidence of the fistula. Probably fall 2010/spring 2011 guts become noisy. (People here it and think I'm hungry) Realizing that it is not a good thing, I make an appt with new doctor (relocated). She suggests a colonoscopy of course. Get it done summer of 2012 and they could not get to far with the camera. The doctor recommends surgery. I am currently recovering a resection.

The new doctor feels that the Humira is not working. I think it did work because I initially began gaining weight. I don't know if the Humira can wearoff or stop working because I did start loosing weight again earlier this year. Maybe increase the dosage? She wants to start me on Imuran. And to top it off, United Healthcare won't cover the Humira after 2012.
 
Emily, thank you for the welcome. I actually don't recall if other items in the refrigerator were frozen at the time. The Humira seems to be working already though. I am experiencing much less pain than usual.

Geophysicist said:
Probably fall 2010/spring 2011 guts become noisy. (People here it and think I'm hungry) Realizing that it is not a good thing, I make an appt with new doctor (relocated).
Click to expand...

Geophysicist - did you experience any pain or other discomfort with the noisy gut? I just started Humira and my Crohn's symptoms (extreme pain, cramping, nausea) have subsided a great deal, but I do have an increase in gut noises - gurgling and draining (think glug-glug-glug) noises. My fear is that the Humira is just masking the pain - not that I'm complaining - but that the narrowing is still persisting.

Another question for the club - how do you get your Humira? Do you use a chain pharmacy (Walgreens, Rite Aid, CVS, etc) or something else (specialty pharmacy, mom and pop pharmacy, etc). Also, do you pick it up yourself from the pharmacy or do you have them deliver it to your home?
 
scoutfinch

At first it was just noisy. In the last year or so it would be accompanied with bloating. It felt like pressure would build up behind the area and then push it through. Understand this was already on a low particle diet as it was. I don't think that the Humira is masking the pain. I think that it does not treat every aspect of the disease, just like it does not work for everyone.

I get my Humira delivered through United Healthcare but if getting it cheaper from Walgreens in a prescription club works, I will be doing that!
 
scoutfinch said:
Another question for the club - how do you get your Humira? Do you use a chain pharmacy (Walgreens, Rite Aid, CVS, etc) or something else (specialty pharmacy, mom and pop pharmacy, etc). Also, do you pick it up yourself from the pharmacy or do you have them deliver it to your home?
Click to expand...

HI there - I pick mine up from my pharmacy - my local one where I am registered. I get 3 repeats per script and I get two at a time. I just asked for another script today. I am currently ok to get the drug until early Feb 2013 and then my specialist has to apply to the govt for another 12 months supply. We should be able to get it - fingers crossed :ycool:
 
@Aura
I'm double dosing (80mg every 2 weeks) as my doctor said there is some research (a doctor in Calgary did the study) that suggests Humira doses need to be adjusted depending on the patient. I started Humira July 2012 - did nothing until we started double dosing in November 2012. I haven't been this good in 2 years (2 bowl movements a day, somewhat predictable, very little blood). I fear the long term effects but for now, i'm just trying to enjoy it.

I also started the SCD diet in October - results so far are mixed but i'm sticking with it.

@Momof2EW
Good luck on the Remicade, as long as you keep trying stuff, looking for what works for you, that's progress.

37 - Crohn's, lower large intestine, Mezavant + Humira + SCD diet.
 
Last edited:
This is to reply on dosage. Here in France they normally give 40 every two weeks but can give 40 every week as maximum dose. The higher dose has helped me generally, so it is unusual that I am having a day of sickness and gut pain and ..... well, you all know about it.

I don't think Humira is the ultimate answer for me but it may be the best there is for me and many others until more research comes to fruition. I heard about some guys working on the idea of zapping your immune system and mapping in a new one from the bone marrow of a sibling. Told my brother to stay alive!i
 

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