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Humira Club Support Group

Paul Cronk

Paul Cronk

Has anyone else the same experience as me? Humira works for me to mitigate the Crohn's symptoms (remission remains a prayer at present) but the effect goes off big time towards the end of each two weeks well before the next shot.

My Gastro has said I can take a 40 mg pen every week as maximum dose, and I am sorely tempted, but the Abbott/Humira information says nothing about that level of dosage and I am worried about compromising my immune system.

Anybody been down this road?
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
Paul Cronk I've heard people mention upping the dose on the forum. Sorry don't have an example on hand but I know its not impossible.

I just took my 15th day dose so I guess I'm done with the loading doses! :D
 
Mountaingem

Mountaingem

@ Crabby-I'm on 40 mg a week, so far no remission either. I have been on Humira only about 8-10 weeks but so far the only thing I've noticed as far as suppression is two bladder infections, but I'm also on Methotrexate 0.6 mL as well.

I had a reasonable flare over the weekend so I'm thinking it's not working out for me, trying to be patient. :ymad:
 
davidfindley

davidfindley

Location
Kansas City, MO
Sorry it's taken so long to reply! I want to thank everyone for their support. I did make it through my first day of dosing! Yay! I followed what many of you said, I left the pens out for about 20 min, just enough to take the cold edge off of them. I decided to stick with my stomach and used 4 different locations. I was scared! I had my fiancee there and almost had her push the button, I may have chickened out a couple of times! :shifty: With her encouragement I finally pushed the button...the actual needle stick isn't bad but the burn of the medicine going in....I wasn't quite prepared for that. It left the area a little tender around the actual needle site, is this normal? Other than just a small light bruise around one of the needle sites there have been no other side effects. I'm ready for my next day of dosing...bring it on! :dance: Again thank you all for the support!
 
davidfindley

davidfindley

Location
Kansas City, MO
Mountaingem said:
@ Crabby-I'm on 40 mg a week, so far no remission either. I have been on Humira only about 8-10 weeks but so far the only thing I've noticed as far as suppression is two bladder infections, but I'm also on Methotrexate 0.6 mL as well.

I had a reasonable flare over the weekend so I'm thinking it's not working out for me, trying to be patient. :ymad:
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Does your doctor have you on anything else for your Crohn's? Getting mine under control, I'm on a couple different medicines...just curious. I have a doctor's appointment in about a month and was just trying to get an idea of whether or not he'll keep me on other medicine as well.
 
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Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
davidfindley said:
It left the area a little tender around the actual needle site, is this normal?
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Ya I believe it is. It should go away slowly. Mine have all been tender afterward. Even when I get a B12 shot its tender. I've gotten a couple bruises so far but they are small. Guess we hit a blood vessel there since there are many, hard not to. :p
 
Amanda D

Amanda D

davidfindley said:
Sorry it's taken so long to reply! I want to thank everyone for their support. I did make it through my first day of dosing! Yay! I followed what many of you said, I left the pens out for about 20 min, just enough to take the cold edge off of them. I decided to stick with my stomach and used 4 different locations. I was scared! I had my fiancee there and almost had her push the button, I may have chickened out a couple of times! :shifty: With her encouragement I finally pushed the button...the actual needle stick isn't bad but the burn of the medicine going in....I wasn't quite prepared for that. It left the area a little tender around the actual needle site, is this normal? Other than just a small light bruise around one of the needle sites there have been no other side effects. I'm ready for my next day of dosing...bring it on! :dance: Again thank you all for the support!
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Hi and way to go!!
I too had soreness and bruising around the injection sites. I gave my second doses in my legs and those did not bruise as badly. I tried putting an ice pack on my legs (I didn't for my first doses) and that seemed to help ease the pain too. I'm glad "taking the edge off" of the medicine worked for you, I thought it helped tremendously. As you said, it is the medicine going in that is more uncomfortable than the actual needle!
 
Amanda D

Amanda D

Hi All,

On Friday I took my third dose of humira and on Saturday woke up with a terrible new pain. I wonder if any of you have had this too:

A stinging, stabbing, sometimes warm pain above my abdomen, near my ribs. Especially sharp when I move sideways.

Thoughts? Thank you.
 
Grant

Grant

Been on Humira now for 20mths. It seems to have done a reasonable job with the Crohns but the infections are stacking up now. Think I've had 4 or 5, still on Anti Biotics for the latest infection. No big deal this time but last time I was hospitalized. I hope it doesn't keep happening, I dont want to give Humira up.
Rgds
Grant
 
guitarjamie03

guitarjamie03

Grant,

I am having the same problem. Seems like I just can't kick these infections. I was on three antibotics for a time, I am back down to two now. Hoping for imporvment soon, but won't know for a while. I think the Humira helps a lot and I too don't want to have to give it up. Take care!
 
Grant

Grant

Tks guitarjamie03, you take care as well. Its such a crying shame that a drug can have a decent effect on the Crohns but have these other side effects that are a bit dodgy.
Rgds
Grant
 
L

lola99

Joining the humira club next week and i am having mixed feelings. I am so excited to not have to take a handful of pills that don't work everyday but scared by all those "side effect warnings" you hear in the commercials and read in the pamplets. (new or worsening heart failure,cancer) ah. Gotta start muting those commercials lol. Anyone had any bruising problems while on it. I have horrible bruising right now (entocort 1 1/2 years and imuran)?
 
L

lizalou

Can anyone explain how to use the "ice method" before injecting Humira, I would be most grateful for a response. Also, has anyone noticed a difference taking it weekly instead of every second week?
 
B

Billk78

Some people like to put an ice pack on their thigh to numb the skin before injecting. For me it didnt make much of a difference. The best thing for me is taking the Humira out of the fridge for like 10 mins to let it warm up a big. Stings a little less going in.
 
L

lizalou

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.
 
B

Billk78

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.
 
BayAreaChronie

BayAreaChronie

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.
 
L

lizalou

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!
 
IAmTheWalrus

IAmTheWalrus

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!!
 
B

Billk78

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?
 
Gra

Gra

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!!!!!
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
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
 
#2asap

#2asap

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.
 
lost kitten

lost kitten

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) :)
 

Attachments

B

Billk78

lost kitten said:
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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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?
 
Dukeis

Dukeis

Dynastic Overlord
#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.
 
Dukeis

Dukeis

Dynastic Overlord
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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You may try taking the shot right after bathing. The skin is softer then. I know it is much easier on me.
 
lost kitten

lost kitten

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?
Click to expand...
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.
 
Dukeis

Dukeis

Dynastic Overlord
Lost Kitten- Beautiful cat you have there! Wish we could have a cat, but my dog doesn't like the idea.
 
B

Billk78

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.
 
B

Billk78

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?
 
Dukeis

Dukeis

Dynastic Overlord
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

Dukeis

Dynastic Overlord
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.
 
Dukeis

Dukeis

Dynastic Overlord
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.
 
lost kitten

lost kitten

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.
 
IAmTheWalrus

IAmTheWalrus

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
 
Grant

Grant

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
 
DougUte

DougUte

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?
Click to expand...
I let the pen warm up for an hour.Hurts much less. Are you rotating locations? I do all mine in the abdomen but I rotate sides.
 
Grant

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
 
R

RXTECH81

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.
 
Dukeis

Dukeis

Dynastic Overlord
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.
 
R

RXTECH81

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?
 
IAmTheWalrus

IAmTheWalrus

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.
 
Scaryman

Scaryman

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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Aura

Aura

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:
 
DougUte

DougUte

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:
 
Gra

Gra

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

2
 
Scaryman

Scaryman

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.
 
Aura

Aura

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.
 
Scaryman

Scaryman

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.
 
IAmTheWalrus

IAmTheWalrus

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.
 
Scaryman

Scaryman

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.
 
Foodlover

Foodlover

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
 
Scaryman

Scaryman

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.
 
G

Garvan

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:
 
Scaryman

Scaryman

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.
 
Foodlover

Foodlover

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!
 
Scaryman

Scaryman

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.
 
Emily

Emily

Location
Pittsburgh, Pennsylvania
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?
 
Toomuchtooyoung

Toomuchtooyoung

Hello everybody, this is my first post to the forum. Have had severe crohns for 11 years (since I was 13). Infliximab worked amazingly for me for approx 7 years until I developed antibodies and got strictures and had to have a right hemi-colectomy in Oct 2011. Have been on Humira since July '11 and it has worked great. Stopped it a couple of months back and went on subcutaneous methotrexate (25mg once a week) but it was totally useless. Started Humira again three days ago and the difference it has made already is staggering. It has improved my arthritis, I can see my erythema nodosum are even looking better, the episcleritis in my eye is looking better and my tummy pain and bowel movements have improved. I always take the shots in my leg as I think it hurts less than my tummy. I grab a big bita fat lol (not that there is much there!) and slap it a few times with my other hand- this makes the shot hurt less for some reason. I also leave the shot outa the fridge for 5-10mins cos it stings more when it's super cold. The pain doesn't bother me too much, it's more overcoming the mental barrier of stabbing yourself with a needle! I cried loads the first few times- by now its a doddle! (I also have to inject my methotrexate so I'm used to it by now :-S). Hoping to post 'my story' soon though it will probably be a very long post lol.

Just wanted to say thanks to everyone contributing to the forum- this forum has helped me a lot over the past few months and provided me with a lot of useful info!
 
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Scaryman

Scaryman

Toomuchtooyoung said:
Hello everybody, this is my first post to the forum. Have had severe crohns for 11 years (since I was 13). Infliximab worked amazingly for me for approx 7 years until I developed antibodies and got strictures and had to have a right hemi-colectomy in Oct 2011. Have been on Humira since July '11 and it has worked great. Stopped it a couple of months back and went on subcutaneous methotrexate (25mg once a week) but it was totally useless. Started Humira again three days ago and the difference it has made already is staggering. It has improved my arthritis, I can see my erythema nodosum are even looking better, the episcleritis in my eye is looking better and my tummy pain and bowel movements have improved. I always take the shots in my leg as I think it hurts less than my tummy. I grab a big bita fat lol (not that there is much there!) and slap it a few times with my other hand- this makes the shot hurt less for some reason. I also leave the shot outa the fridge for 5-10mins cos it stings more when it's super cold. The pain doesn't bother me too much, it's more overcoming the mental barrier of stabbing yourself with a needle! I cried loads the first few times- by now its a doddle! (I also have to inject my methotrexate so I'm used to it by now :-S). Hoping to post 'my story' soon though it will probably be a very long post lol.

Just wanted to say thanks to everyone contributing to the forum- this forum has helped me a lot over the past few months and provided me with a lot of useful info!
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Hwy Tom, Welcome to the Humira club. Sounds like you have things under control. Let us know if we can assist further. How did you know methotrexate was worthless for you? Reason why I ask I am wondering if I need to take it anymore
 
Toomuchtooyoung

Toomuchtooyoung

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!
 
Scaryman

Scaryman

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.
 
Toomuchtooyoung

Toomuchtooyoung

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.
 
Scaryman

Scaryman

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.
 
carlh425

carlh425

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
 
Dukeis

Dukeis

Dynastic Overlord
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.
 
carlh425

carlh425

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? ;)
 
Dukeis

Dukeis

Dynastic Overlord
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?
 
K

Kelseysmith

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!
 
Scaryman

Scaryman

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!
Click to expand...
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.)
 
Paul Cronk

Paul Cronk

I find that you wait nearly ten seconds and then it all comes in an audible swoosh. So gotta hold concentration throughout or you leak or miscue. Never hurt before but I lost so much weight with an infection (following flu vaccine!) that I had to switch to belly and bunch up whatever flesh I can find. It does hurt a bit but maybe because you are hurting yourself. Still nothing in comparison to the horror of a real big flare!
 
Scaryman

Scaryman

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.
 
Gra

Gra

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.


2
 
Scaryman

Scaryman

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:(.
 
Aura

Aura

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
 
Foodlover

Foodlover

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!!
 
Aura

Aura

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
 
S

Sami

Location
Peterborough, uk
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
 
K

KYGirl

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 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.
 
Gra

Gra

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
 
DougUte

DougUte

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:
 
izzi'smom

izzi'smom

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!
 
Dukeis

Dukeis

Dynastic Overlord
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:
Click to expand...
Wow! That is amazing! Hope that is contagious to all of us that take these fire shot!
 
Chally2

Chally2

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.
 
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