Humira Club Support Group

Crohn's Disease Forum

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My daughter is 4 now, she was diagnosed at three. The flare symptoms started just after her 3rd birthday. There aren't a lot of kids in that age group with Crohn's but the GI says he is surprised to see the numbers of young kids growing over the past year or so. I have read that it is thought that young children who get Crohn's have more of a genetic component. We haven't seen it crop up in any of our other family though. She is the 6th of 7 children and all the rest are just fine so far.

Hope it is nice and warm in Illinois for Easter. I grew up not far from Springfield.
 
Never felt great on Humira, but I only had 3 obstructions in the past 4 years while on it compared to the 5 in one year before I started that drug. This past obstruction had the GI do further testing and my whole small intestine is raw, ulcerated, and inflamed. Blood tests showed high levels of Humira, low antibodies, so it was said it's just no longer working for me. On Imuran and Entocort for right now. More tests in 4 weeks. Frustrated, but still hopeful something will stop the pain.
 
I am pretty sure Humira has stopped working and I am flaring. My last crp test was elevated, not sky high elevated but elevated. I have lost a lot of weight since summer (everything started when I broke my leg in August). I have the urge "to go" but I never feel "empty" enough. And lately I have pain that comes and goes. I have an appointment on April 17th scheduled and I will probably end up having a colonoscopy in the next 10-15 days. That is if I don't have an obstruction before and end up at the ER. I was hoping for a few more years on Humira (I am on the drug 4 1/2 years so far). I don't like the Remicade procedure and I don't want to be on the drug. But Cimzia is not available in Greece, LDN is unheard of here and if I mention stem cells transplant my doctor will probably laugh out loud.
Meanwhile I am drinking lots of water and other liquids trying to avoid a partial obstruction, (I am also drinking orange soda and ginger beer as they both help me ease the heartburn after lunch).
I want to make Humira work again or find out I am not flaring after all. I had almost five good years so far is it too much to ask for a few more on the same drug?

On top of that I have to deal with all the unhealthy food of the Greek Easter coming up this weekend. I will probably have to explain to everyone why I cannot eat the stuffed wine leaves, the green salad, and all the other yummies Greeks eat, while I will listen again and again of stories about the second cousins uncle grandmother who had bowel problems and was "cured" by drinking goats milk, or by homeopathy, or by doing the opposite of what their doctor advised and "why don't you try it yourself".
 
Pilgrim,
Weather was wonderful on Easter in Illinois. I hope there is a major breakthrough in treating this disease so your daughter and others get better results. She is far too young to have this.
 
Scifimom, your journey sounds very similar to mine. I'm off Humira for now. Hoping this new cocktail helps. I've heard every "magical" cure by lots of well-meaning people, but people like us just nod and smile. Hope you're not suffering too much today and you didn't get tempted by all that delicious food!
 
woohoooo just found out I am fully covered for Humira!! Another week or less hopefully and I will be getting the loading dose! Thank you Canadian government!
 
Sea Glass said:
woohoooo just found out I am fully covered for Humira!! Another week or less hopefully and I will be getting the loading dose! Thank you Canadian government!
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You must have found Trillium! We don't get full coverage, but the cost is much less than full price for us. Our daughter was denied by our workplace insurance because she was under 13! Very frustrating. But like you, we are grateful for the provincial coverage help. I hope your loading doses go well and you feel superhuman in no time.
 
Elektrikhd said:
Anyone ever sit down with their Humira and just go, "nope, it's not happening right now" ? That was me last night. Did my shot first thing after waking up this morning. I've been on it over 2 years, and sometimes it's been a little tough, but that was the first time where it just wasn't happening for me.
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Elektrkhd...and my fellow understanding folks:
I have read our Crohns forum for years and so appreciate each and everyone's honesty. This disease is hard on our body, and can be hard on our minds and soul at times. This is my first time to actually respond to a post. It was this very post that gave me the push to say something. YES...I am with you here. I have been on Humira for almost 3 years and I at times just didn't feel the shot happening for me!! Totally; however, I have never had enough nerve not to take it. I am so proud of you to take your shot the next morning. Yes Humira helps, but the shots can get and be hard to take...I so understand. Everyone...I am not encouraging anyone not to take their shot!! Please do not mis-understand me. Although, I understand fully what was posted here within. Keep up and keep going. I don't like it either...but I am scared not to take the shot. I can't go through surgery again....just want to everything to help as much as I can to avoid surgery. BUT I DO UNDERSTAND!
 
Hello all.....I'm a 'long time reader...first time poster' After over a year of debating/waiting for funding, I finally did my loading dose of Humira last night. I'm feeling mildly achy and tired today, but nothing serious. Here's hoping this will be a good fit for me!
 
Joining the Humira support group. :ghug:

Started Humira last November. It immediately helped with my abdominal pain...but I still ended up needing surgery for a stricture. Anyway, still plugging away with twice monthly dosing.

Gotta love that liquid fire injection... :ymad:
 
Scifimom - I hear the things pretty often about what things I should be eating or drinking from people. Well meaning, but so frustrating, especially because they're usually dead wrong--telling me about all the raw vegetables I should be eating! Or sometimes they see me eating or drinking something and will make a comment about how it's not helpful. So I really hear you on that, I know how annoying it gets to go through either trying to explain to people or do the "ok, thanks, I'll look into that" or "well, I already tried that."
 
Ugh. I'm getting so frustrated. I've been on Humira for about 2 months now and started a weekly dosage a few weeks ago. Overall, I feel so much better (no nausea, less fatigue), but I have increased diarrhea and cramping (diarrhea every other day or so). How the heck am I supposed to know if Humira is working when I feel better overall but have some increased symptoms? I asked my GI, and she said she thinks it will improve and to give it more time.
 
I have been on Humira for alittle over 2 months also. I also feel better but still pushing people out of the way to get to the bathroom. My GI it telling me basically to deal with it. Hope you can get better answers than I can.
 
I'm still hoping it will gradually improve for the two of us. If we feel better, there must be something good going on...right? Gah. It just sucks because prior to diagnosis I felt terrible, but I hardly had any diarrhea, so I'm just like...what?
 
you are coming off prednisone, your symptoms will get worse will your body adapts. also the diarrhea never goes completely away depending on the type of crohns you have. ive also heard that taking antihistimines while on humira is not a good idea, does your doctor know you take zyrtec?
 
Good point about the prednisone, I never thought of that! My taper is extremely slow, but I suppose it's still an adjustment for my body. I'm hoping that the D subsides on its own as I adjust after the taper is over.

As for the antihistamines, my GI does know. I just researched drug interactions with Humira, and it was not on the list, luckily! :)
 
Hey, what do you think about my situation:

I started humira 2½ months ago.
after 3-4 weeks , I started to feel good, I thought I was in remission.
It lasted 1 month, I met my GI, everything was good.

but in the last 3 weeks, symptoms are back.

Do you think the starting dose has stopped my Crohn's but now the every other week shot is not enough ? I know it can take a few months before to be effective, however if I responded at the start and not now, is it because it's no longer working for me ? Do you think I should go on weekly shot ? Do you think my GI could give me Entocort with Humira ?

I called my GI but I'm still waiting for the call back

thanks
 
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That's pretty much how it's been for me as well, which is why my GI upped my dose to weekly. I felt great after the loading doses, but 2 weeks later I started experiencing some symptoms. I'm still having symptoms now, though, but she said I need to give it more time with the weekly dose. Being patient is so hard!

I would ask your GI about possibly doing a weekly dose. Can't hurt to ask!
 
MirrorBride said:
That's pretty much how it's been for me as well, which is why my GI upped my dose to weekly. I felt great after the loading doses, but 2 weeks later I started experiencing some symptoms. I'm still having symptoms now, though, but she said I need to give it more time with the weekly dose. Being patient is so hard!

I would ask your GI about possibly doing a weekly dose. Can't hurt to ask!
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you are now on weekly dose ?
 
May just be a rare freak thing, but Zyrtec caused my first (undiagnosed) real flare of Crohns. Cramping, bleeding, diarrhea. When I stopped the Zyrtec it went away. (I wish it were that easy now.) Maybe a coincidence, maybe just a rare thing. I've had no trouble with sudafed, allegra, or benedryl however.
 
Matrix said:
I hope you will.
Do you have any side effect with humira?
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Thanks. I'm tired for a day or two after the shot, but that's all I've noticed!

Elektrikhd said:
May just be a rare freak thing, but Zyrtec caused my first (undiagnosed) real flare of Crohns. Cramping, bleeding, diarrhea. When I stopped the Zyrtec it went away. (I wish it were that easy now.) Maybe a coincidence, maybe just a rare thing. I've had no trouble with sudafed, allegra, or benedryl however.
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That's so strange! Maybe it was just a coinscidence, or maybe your body just really didn't like it for some reason. I've been on it for years before I even had Crohn's, so I doubt it's that simple for me. :(
 
Hey, everyone!!

I'm making myself more active on here. I need more communication with people who have IBD.

Anyway, I've been on Humira since August so 6 months roughly. I'm still experiencing symptoms a lot.
 
I'm celebrating three years on humira and imuran. Do I get a cake? That would be nice. Mind you so would a bottle of whiskey ;)
 
Ive been on pred too, its nasty stuff. make sure you take calcium supplements!
from what my GI has said; for Crohn's disease the every-other-week dose is low for most patients.
MirrorBride, that is what happened to me. i would keep complaining to your doctor till s/he upps the dose. There is also a blood test called prometheus that checks the level of active humira and newly formed antibodies that they will probably do first to make sure the humira works at all and you havent developed a total immunity to it.
Good to hear about zyrtec b/c that is also my go-to allergy med. allegra works well too. I am also on mtx and colozal so ill need to ask about those interactions.
 
I'm not 100% sure which 3rd party they went with... If it's not Trillium, there are a few others they would apply for... I didn't ask who I was funded through but because my household income is just me, and not high enough for their bracket, I am very thankful for full coverage.
I'm still waiting on my dang loading dose... insert a really angry face... I was told the nurse would call me within 3-5 days (not business day)... yesterday was day 5, and still nothing, and I have been in touch with Progress who has been in touch with the nurse's coordinator who has been in touch with the nurse.. via email.. and nothing! If nothing by 5 today, I am going to go to emerge and have them teach me there hopefully... this is BS...


Pilgrim said:
You must have found Trillium! We don't get full coverage, but the cost is much less than full price for us. Our daughter was denied by our workplace insurance because she was under 13! Very frustrating. But like you, we are grateful for the provincial coverage help. I hope your loading doses go well and you feel superhuman in no time.
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I also have a fistula... it's a pain in the @ss... literally! And I'm waiting to take my loading dose... so annoying.. I just want my pains to go away... no surgery yet.. last resort

POTTYTIME! said:
I guess I will have to put on my big boy pants and give it a shot. "Pun intended"
Being bloated and swelled up I got plenty of padding. IM waiting on CT SCAN results to schedule surgery/surgeries. Waiting to see if I got scar tissue, fistulas, partial blockage, etc. Also have fistula on the bum. So looking like im going to do a 2 for 1 surgery.
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Got my CT SCAN Results. My guts are getting better but now they found AVN in my hip bones. Also had a MRI to confirm the AVN. GREAT, now I got something else to deal with. Taking a months worth of antibiotics to try and get rid of this fistula, if it dont work then surgery on my hiney is next. My orthopedic Dr give me 5 to 20 years till a hip replacement, "THANK YOU PREDNISONE"! Kinda hard news to hear when you are 35. Looking like my offshore career is over.
 
Anyone still here? It looks like the last reply was in 2009??

I wanted to ask if anyone in the Humira support group had applied to Abbvie (maker of Humira) for their financial aid. My doctor is recommending them as I get ready to retire, but I want to hear details from somebody who's done it.

Is it one and done, or can I apply every year? It looks dangerous as hell to me to retire and give up group insurance unless I know I have some help for what Medicare Part D won't pick up. Still, I can't work forever.
 
Learning how to get around this place; thanks for your reply, pottytime. My GI says he will fill out forms for me as well. He says he has other retirees on Humira, and that I shouldn't sweat this so much.

I'm just nervous about making such a big leap on such an expensive medicine. Doc says to stick to Humira as long as possible, but for a long time I was thinking of requesting Remicade instead since it would be covered by Medicare (because its infusion in a hospital).
 
The only reason I went on Humira was the convenience of doing it myself. Thr only sides I have had are, puts me to sleep within 10 minutes and a very bad migraine the next day. Speaking of which, im about to do one and go to bed. Well suffer tomorrow alittle. But the doc says it is working. Just slowly. Hope it works for u. The only horror stories I can give u is alittle pain when injecting. Other than that, nothing. Take it out about 4 hours b 4 time.
 
Really? No one told me to take Humira out of the refrigerator early. Injecting it hurts a bit, but I don't notice it making me tired or giving me a headache. It's given me a pesky case of very itchy eczema.
 
My GI said I was the first case he has heard of. I used to take my injections around noon every other Friday. I pushed them back so someone is home. Where I am 10 minutes after the injection is where I will stay for about 8 hours unless someone can move me. With that, it has killed my offshore career.

My next 2 shots was due here today but the got held up in Tennessee. Now they are scrambling to get it to me tomorrow after I told fedex what was in it and how much it was.
 
My training nurse told me to leave it out at least 15 minutes prior to injecting it to help with the sting. I leave it out 30 minutes and it seems to help me. Good luck with getting help with your Humira cost. I too am concerned about that in the future. I have about 8 years before I have to worry. It is a scary thought though since the drug is so expensive!
 
Hopefully one day they will make it affordable. From what I have seen on here the average time people has been on it is around 5 years before it stops working. Hope it works out for all of us.
 
I'm curious if anyone that's been on humira for 3 or more years and imuran fortnightly notices behavioural changes and increased anxiety one or two days out from injection. And 4 hours after injection feels calmer?
 
I was given two alternatives, my thighs or my stomach. Both seemed bad news to me at first, but I found using my stomach was much less painful. It stings a bit, but you get used to it. I've never used the ice trick on my skin, nor have I taken the Humira out of the refrigerator several hours early. If I remember this Friday I will try the ice.
 
Aura said:
I'm curious if anyone that's been on humira for 3 or more years and imuran fortnightly notices behavioural changes and increased anxiety one or two days out from injection. And 4 hours after injection feels calmer?
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Can't say I have noticed behavioral changes in my almost 4 years on it. Of course I get hyped up when getting ready to take the shot!
 
Hey, in the last 1 or 2 weeks I have joint pain in both hands (fingers and wrists), how can I know if it's from crohn's or from humira or MX or anything else ? I am a computer technician, I know it's not helping to work on a computer all the day.
 
Hi all!
Just wondering if anyone has experienced allergic reactions etc after having started humira?! I'm very new to humira and am also taking 100mg of azathioprine daily. I was in the hairdressers the other night and took an allergic reaction to the tint. Nothing too serious thankfully but I've been having my hair coloured for yearssss and never had anything like that. As it happens, I take a daily antihistamine, which probably helped but worrying if this persists I'm going to be 29 with grey hair haha help!
 
Was the tint ammonia free? I use ammonia free tints. I'd be all grey if not for hair dye. I take 100 aza as well as humira and 2 antihistamines per day. Sometimes it's a little itchy after tint. But not bad.
 
Hi, just discovered this forum looking for Humira information, because I'll be probably taking it in two weeks or so. Hope everything goes well.

I heard Humira it's really expensive, I'm from Spain, so I won't have to pay anything because the public health care takes care of it, but I'm just curious to know how much it would cost.

Thank you.
 
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In Canada my two shots can vary from $1537 to $1767.00 (depending on where you get it filled) and I have to get them every two weeks as I inject weekly, but still the cost is way less than yours in the States (sorry)
 
WHAT? humira in Greece costs around 700 euros per shot. Thats like 800 dollars. It is still insanelly expensive for Greece and universal healthcare covers the patients but still its WAY cheaper.
I dont get it Humira is being distributed by Abbott (abbvie) world wide how can it have such a huge price gap?
 
more information

They have programs you can get on to help you with paying for it.

( The Ambassador Program ) They help you pay what your insurance doesn't

You get a nurse that will help you with your injections if you need her. Your doctor should have all this information.
 
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Does anyone else get sleep deprivation by day 3/4 after the shot? I am so tired the first 2-3 days, and then suddenly I am up til 1:30 in the morning, my mind running crazy and I'm beyond exhausted and can't sleep! Grr!! 3rd injection tomorrow night.. down to my normal single dose! Am I the only one that secretly enjoys the pain of the burn? I didn't think I would say that... I dread it a little bit but that pain makes me feel tough (injecting in my leg... not my stomach, I'm a baby there...)... and I found my left leg doesn't bruise, but my right leg does... very strange! Or maybe the first injection bruised me but got pro by the second one... hard to tell now that i'm down to one.
Rant over.
 
Sea glass,
If I sleep 3 or 4 hours a night, im doing good. Being you can only take Tylenol, I would suggest 1 Tylenol Simply Sleep, to help. Its gentle on the stomach and non-habit forming. I will take them every so often but every night due to I already take so many pills, I dont want to add to the list. I agree on the belly injection, I cant bring myself to do them either. After the burn in the leg, I would rather not have it in my belly.

Hope all goes well.
 
Im so glad there is a Forum to talk to other people with the same issues! So I just started Humira last week. I feel sooooo exhausted and nausea. I am a really active person. I run, lift weights, play roller derby, and surf. I am usually ok just on certain days I have to be real close to a bathroom or I have to wait until I feel a little better then go to gym. Since last week I cant keep up with my routine. Its making me super depressed. I have to be active everyday. Does this get better? I hope its just because it was a big dose. If this makes me feel worse than I am getting off it right away. Sounds like its different for everyone how long it takes to work. If its two months and I still feel like this Im getting off. I cant live without being active:(
 
UCDerbyGirl:

Everyone is different. Some people feel better in a week. Some people longer, and some people it dont help at all. I have been on Humira for 3 months with minimal relief. My humira nurse is looking into if I dont feel any better by the end of the month, talking with my GI to stop it. Not worth the risk. Dont get me wrong, I do feel alittle better, but with the persistent symptoms I have, I feel its not worth the possibility of life threatening side effects.

On the note of activities: This disease is life altering for some people. You cant eat the same, or your body doesn't digest the same. I myself used to be active due to my job, offshore crane mechanic. But I have only worked under 2 weeks since November. It is depressing, but thats when you pull up your boot straps and not let this disease shape you. I learned there is not an ounce of dignity with this disease. I am always having some one looking and inspecting my back side. I sometimes have to run to the bathroom in public. I often have to drive like a mad man to get back home and pray I dont crap myself in the car first. But if it dont work out, and there will be accidents, Clean up and go on about your day.

If you let it control you, that's exactly what it will do. Hope all goes well and Keep your head up.
 
UCDerbyGirl,

I noticed huge fatigue with my daughter during the loading doses. By about her 2nd regular dose it was much, much better.

You may just need to give it time. Do what you can, but rest when you need to rest.
 
I make sure I take lots of Vitamin D (liquid form) and I have more energy than I would otherwise.. I get my levels tested at least 4 times a year and I'm usually below, even with 8000iu! The loading dose wiped me out too a month ago and I slept most of the next day... the following 2 were much better, less tired! Give it time, don't feel too lost!


UCDerbyGirl said:
Im so glad there is a Forum to talk to other people with the same issues! So I just started Humira last week. I feel sooooo exhausted and nausea. I am a really active person. I run, lift weights, play roller derby, and surf. I am usually ok just on certain days I have to be real close to a bathroom or I have to wait until I feel a little better then go to gym. Since last week I cant keep up with my routine. Its making me super depressed. I have to be active everyday. Does this get better? I hope its just because it was a big dose. If this makes me feel worse than I am getting off it right away. Sounds like its different for everyone how long it takes to work. If its two months and I still feel like this Im getting off. I cant live without being active:(
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I actually prefer not the flab... straight into my leg, midway down... it's different for everyone... I think I am just more sensitive in my belly. pre-icing helps for sure though!

SunshineSam said:
would you all agree it hurts less to admin in an area that is a bit more flabby?
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UCDerbyGirl said:
Thanks all! As you know its just sooooo frustrating. I just want to feel normal again!
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I have been on Humira for coming on 5 years now. The fatigue will get better after the loading doses. One thing I have done to help with that is changed the time I take my injection. I now take it in the evening. Then I go to bed and sleep it off. By morning I am fine, energy wise.
 
:thumbdown:

Well.. I don't think I will stay on humira :(
I have a flare-ups now

I've been 4 months on Humira
It gave me 1 month symptom free but the last 2 months wasn't very good and now it's clearly a flare-ups.

I had already contacted my GI last month, and a MRI is scheduled in 2 weeks.

I've read that for 1/3 of people, Humira won't work because of antibodies that form in the first 28 weeks. I don't know if it's my case but it sucks and I don't feel that Humira is helping me :(

I had symptoms in 16 of my last 20 months (including a surgery)
I'm so tired of this shit :frown:
 
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
 
edentenley said:
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
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Maybe you are hitting some blood vessel? Or you need to wash your hands and sterilize the area better before injecting? Do you inject always at the same spot? Try to change spots every week (like left/right side of belly or left right leg etc)
 
edentenley said:
Question...I've been on Humira since November. I take one injection every two weeks, usually with no issue (other than extreme headache for two days after injection).

Anyway, the last three injections I have had a pretty intense local injection site reaction. Super firm, red, hive like lesion about two inches in diameter, that lasts for 4 or so days. Its crazy itchy! Does this mean I am building an immunity to it already? I just started and it is working...so I'm worried that I'll have to switch meds. :( Help!
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do you pinch the skin? My first shot, I pinched the skin and the injection site welted up. Now I just put pressure straight down without pinching. Now the only the only mark is the needle mark. Definitely worth talking with the humira nurse and your doctor about.
 
I had a friend walk me through my first time over the phone and he warned me don't pinch the spot... and I haven't, and dont want to imagine how much worse it is to pinch... I hit a blood vein last night.. got a little blood blister but other than that, no issues.

POTTYTIME! said:
do you pinch the skin? My first shot, I pinched the skin and the injection site welted up. Now I just put pressure straight down without pinching. Now the only the only mark is the needle mark. Definitely worth talking with the humira nurse and your doctor about.
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Its not a blister or blood blister, its a reaction. Its red and raised and itchy, like a really bad/intense mosquito bite.

Yes, of course I wash my hands before hand, and I also sterilize the area with the alcohol swab that comes with each pen. I also rotate sites every time I give it.

I have an appointment with my gastroenterologist in two weeks, I will be sure to ask him.
 
I have been on Humira for about 2 and a half years. I get the raised reddened area at the injection site every time. Lasts about 3 days for me. Every shot everywhere I give it burns like hell but doesn't last long. I let it sit out about 15 mins, use ice to the area before the injection and make sure the alcohol from cleaning the site dries prior to injection. But like I said, still hurts. Anyone know long term affects of Humira?
 
So I'm in the states and my insurance pays all but $60 a month and then I signed up for the copay assistance program. I only pay $5 a month for 2 shots as long as I have insurance
 
I have only been on Humira for a few months. Only know what I have read on the long term side effect. My doctor assured me that side effects are slim. I take my shot out of the fridge " hours " before shot time. My humira nurse informed me they was working on a new formula so it wouldn't burn. Will see what happens with that.
 
So I have been on Humira for crohns since December 2014. It has lowered my resistance to colds and stuff and have one now. It seems like I feel like I am getting sick and sometimes it passes after 2 days.. this one has been over a week.

Question I have is I am on antibiotics for the possible bronchitis infection that my dad had when he got this. It made a mess of my stomach in two days so I stopped it and actually missed a Humira injection then cause I cant take it when I am sick with the cold thing, right? So I have been off the antibiotics for 2 days and stomach is still kind of IBS coliitis/gerd like. I am eating rice and crackers and chicken soup. Thinking my stomach would be better if i DID inject the Humira tomorrow vs waiting for the cold cough thing to dry out... stomach has not been this bad in a very long time.. so it could only help?

Will call Gastro dr tomorrow but curious about experience?
 
I think you should call the Humira nurse before you skip any injections at all. I don't know if just having a cold would have them ask you to skip it. Bronchitis...I could see that. So, now you have untreated bronchitis?

You could probably get a Humira nurse on the phone right now. Then you could also talk to the GI tomorrow. 3 heads are better than one.
 
Pilgrim said:
I think you should call the Humira nurse before you skip any injections at all. I don't know if just having a cold would have them ask you to skip it. Bronchitis...I could see that. So, now you have untreated bronchitis?

You could probably get a Humira nurse on the phone right now. Then you could also talk to the GI tomorrow. 3 heads are better than one.
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Pilgrim, thanks.. I never even thought about the Humira nurse.... I will check that out. My Dad had cold/cough/bronchitis. He went on antibiotics and it tooks two weeks to get better. My Mom got the cold/cough last Monday, I got it Tuesday. The cough stage has become more like a "bark"sound vs cough.. not sure if it's bronchitis or an infection, dr was treating me proactively as I am in close contact with my folks who I am a caregiver for..

Regardless, I took antibiotics for two days and it tore up my stomach... so I stopped and Dr gave me new meds but havent started. Told her I need to wait for stomach to get better and revisit.

The Humira I think would straighten out the stomach issues quickly,
but I have mucus and the occassional bark cough thing.. so yeah, toss up.

Previous infection I had, Gastro dr said if I had a few days of antibiotics in me I could take the injection.

I will call the Humira nurse tonite.. THANK YOU for that suggestion!:wink:
 
POTTYTIME! said:
UCDerbyGirl:

Everyone is different. Some people feel better in a week. Some people longer, and some people it dont help at all. I have been on Humira for 3 months with minimal relief. My humira nurse is looking into if I dont feel any better by the end of the month, talking with my GI to stop it. Not worth the risk. Dont get me wrong, I do feel alittle better, but with the persistent symptoms I have, I feel its not worth the possibility of life threatening side effects.

On the note of activities: This disease is life altering for some people. You cant eat the same, or your body doesn't digest the same. I myself used to be active due to my job, offshore crane mechanic. But I have only worked under 2 weeks since November. It is depressing, but thats when you pull up your boot straps and not let this disease shape you. I learned there is not an ounce of dignity with this disease. I am always having some one looking and inspecting my back side. I sometimes have to run to the bathroom in public. I often have to drive like a mad man to get back home and pray I dont crap myself in the car first. But if it dont work out, and there will be accidents, Clean up and go on about your day.

If you let it control you, that's exactly what it will do. Hope all goes well and Keep your head up.
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Oh MY...Pottytime!!! I laughed the entire time reading your post :) because I know exactly what you mean! I have been on Humira for 3 years, and it took about 6 months for the drug to begin to help me. I have had Crohns for about 12 years, surgery 3.5 years ago....and truly this post was the best explained how this works....Cudos to you!! You said it all so well :)
 
ScubaWoo said:
Oh MY...Pottytime!!! I laughed the entire time reading your post :) because I know exactly what you mean! I have been on Humira for 3 years, and it took about 6 months for the drug to begin to help me. I have had Crohns for about 12 years, surgery 3.5 years ago....and truly this post was the best explained how this works....Cudos to you!! You said it all so well :)
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Thank you. I try not to beat around the bush. I guess all of my doctors have rubbed off on me with their poor bedside manner. As said before, when you talk about your bathroom habits to anyone and show you back side to everyone, hard not to take it in stride after that. This disease sux. I can only give my insite, and opinions.


My GI's opinion is humira injections are 50/50 at working.
 
Hi all,

I am waiting for my first round of Humira to arrive in the mail. Thanks for all of the tips and suggestions. I'm nervous (like all of you), but will keep reading to gain some backbone!
 
My little one (4 yrs old) started counting to work her way through the injections. She did an amazing job this week! It really helped her pain perception. She got to six and no real crying.

For an adult I might try counting backwards by 3's from 100 or something like that. I was so proud of her - and it really helped!
 
Pilgrim said:
My little one (4 yrs old) started counting to work her way through the injections. She did an amazing job this week! It really helped her pain perception. She got to six and no real crying.

For an adult I might try counting backwards by 3's from 100 or something like that. I was so proud of her - and it really helped!
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Glade to hear that. I hate taking one. The counting down works for me. I just do the 3, 2, 1 about 10 times before I get the nerve to bush the red button.
 
What do you guys do with all the ice packs and coolers? I have kept a few of the ice packs but I feel wasteful throwing away all of those coolers
 
The coolers are too small to be good for much else unfortunately. The only thing I could think of was if I needed to keep some popsicles frozen for camping or something.

We started tossing them, but I feel bad too.
 
I started humira 2 weeks ago, yesterday I had my second dose. I don't really feel it that painful, I was scared for all the comments I read on the internet, but it's just like a pinch for a few seconds and that's it. I guess it might depend on the person but I'm skinny and dont have much fat to inject it and still it's ok.
 
MBO said:
I started humira 2 weeks ago, yesterday I had my second dose. I don't really feel it that painful, I was scared for all the comments I read on the internet, but it's just like a pinch for a few seconds and that's it. I guess it might depend on the person but I'm skinny and dont have much fat to inject it and still it's ok.
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:dusty: That's wonderful! I hope healing comes quickly.
 
Hi,
I'm not on Humira, but a friend is. In January 2015, she was diagnosed with Non-Hodgkins Lymphoma. She was 22, now 23 years old. The Doctors believe that the Humira caused the cancer as it is a listed side-effect. She is having daily Chemotherapy and this 2 month stint of Chemo will be followed by a stint of Radiotherapy, followed by more Chemo and so on. They say she will be receiving treatment for 2 years.
Has anyone else heard of Humira causing Non-Hodgkins Lymphoma and if you have, did they survive?
Sorry for the depressing post. Thanks for your help.
 
I believe it is listed on the packaging as a possible side effect, unfortunately. We all hope it won't happen. I'm so sorry it happened to your friend. I hope she gets through it and is ok in the end. :(
 
Thank you. It seems seems so unfair that drugs which are supposed to help us can actually make our lives worse. I was prescribed Prednisolone and it gave me DVT. Again it's a listed side-effect that you never really think you would get.
 
Its soooo scary when the side effects they list are scarier than what you already have. When you are in so much pain and your doctor is telling you "OH its safe you will be fine. I really think this will work." You are trusting them. If this happens to me I will be devastated! I feel awful for your friend. Its such a hard choice to take something when you hear this. Did I make the right decision? Doctors know we are trusting them to help us not hurt us. I just don't understand a side effect this BIG like Cancer...I'm scared for me and us all since the first needle I put in....did I make the right decision to trust my doctor?
 
UCDerbyGirl said:
Its soooo scary when the side effects they list are scarier than what you already have. When you are in so much pain and your doctor is telling you "OH its safe you will be fine. I really think this will work." You are trusting them. If this happens to me I will be devastated! I feel awful for your friend. Its such a hard choice to take something when you hear this. Did I make the right decision? Doctors know we are trusting them to help us not hurt us. I just don't understand a side effect this BIG like Cancer...I'm scared for me and us all since the first needle I put in....did I make the right decision to trust my doctor?
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Funny u mention trusting the doctors. The last time I was at my GI, there were a lady in the office saying she was going to talk to her lawyer about the meds the doc prescribed her. Their defense, " It is YOUR RESPONSIBILITY to check the side effects before you take it"! My GI gave me the same story about how the chances was like 1 in 450,000 I would get anything. I only have only chatted with a alittle over 100 people in here and now know one with bad side effects from humira. I would say he was wrong.

Im sorry to hear about what yall are going through. Keep praying and taking one day at a time.
 

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