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Crohn's Disease Forum

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DougUte said:
How common is it for us Humi's to have battles with the insurance companies to cover Humira? Insurance company is wanting a prior authorization. My doctor's office is telling me that they are waiting for the insurance company to send them a form and then they will send in the application to the insurance. (I think the doctor's office messed up and did not get the ball rolling untial I called them today.)
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I had a hassle with getting the ball rolling with Remicade and Humira. Mostly because it took my Dr. and the Insurance company communicating and working together, which is always a hassle.

Once they did get their act together they covered everything 100%.
 
fgillette1986 said:
I started Humira around March of this year. I've decided to stop taking it about a month ago.
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I started around the same time and after my scope on Friday I am guessing my Dr. will take me off of it. He is not a big fan of the drugs and now they/it does not seem to be working.
 
In my "slow down days" right before my injection. Its due on Saturday. Anyone else get this? I know it is working at some levels because I feel like crap when it is wearing off lol.
 
I had that experience with Remicade after being on it for over a year, Nica. I didn't have that experience with Humira but then again I was only on it for several months.
 
I have been on Humira for over a year now. I do it in my leg because I did Methotrexate in my stomach and I ended up getting so freaked out I would become nauseous and gag. Both I feel hurt the same it just depends on which you are more comfortable with as to which will feel better I think. But try both what can it hurt. I am on the humira pen once every 2 weeks and I still have symptoms but nothing that can't be handled. I went on once a week and got a rash all over my body and was so itchy it hurt and it didn't improve things that much. Deffinately the best drug I've been on so far but still hoping for that miracle pill one day :D
 
Humira is a specialty drug and does require prior auth by almost all ins co's as far as I know. It's so expensive Ins companies want to make sure the doc has exhausted other treatments and I believe you have to meet certain guidelines to qualify for it. My doc had to ask me tons of questions, and give this info to the ins co. Good Luck
 
i start my first 4 injections tomorrow and am need to get them going. I was on remicade for one infusion but had to stop due to a really rare reaction. My inflammatory markers are normal right now but the remicade is definetely wearing off because my energy levels are dropping everyday. Hopefully Humira works the same as remicade except the reaction part.
 
The insurance company has denied covering Humira at this time. I hate having the insurance people play doctor. I have not yet heard from my doctor about what we are going to do now. My Crohn's is severe, but due to other docs messing up the diagnosis for years, I have not been on a previous crohn's med. I have to try (and have fail) 2 other treatments before they will cover Humira. AAAAAGGGGGHHHHH!!!!!!
 
Doug,

You can check into abbotts prescription help area, they might be able to assist you getting your insurance to cover it or covering quite a bit of the costs. You also might want to try the other meds to see if they work for you. If Asacol will work to get you out of a flare then why would you want a biologic?
 
Welp, I have a sore throat and a low grade fever and terrible congestion, sneezing, etc. I also showed some signs of a blockage again (severe bloating and stomach pain). I guess I am going to see my GP tomorrow since my GI told me to go on a clear liquids diet for 24 hours and see how things go....

I thought illness with Humira = no bueno???? And all he tells me if drink clear liquids only?? =(
 
Nicole,
Go see your regular doc and see what he says is going on with you. flat out ask if its OK to take humira with whatever it is.

Then call your GI and tell him what your regular doc said to do. Whenever I get an infection they have me hold off on humira for an extra week based on what my symptoms are doing.
 
When I get a low grade fever I just delay a day, but haven't had to delay more than that. Sounds like you need to contact your GI anyway about the bloating/pain anyway.
 
beth said:
When I get a low grade fever I just delay a day, but haven't had to delay more than that. Sounds like you need to contact your GI anyway about the bloating/pain anyway.
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Hey Beth-

I called him yesterday thinking I might need to go to the hospital for another blockage. He just told me to keep taking my meds and go on a clear liquid diet for 24 hours.
 
Nica said:
Nicole,
Go see your regular doc and see what he says is going on with you. flat out ask if its OK to take humira with whatever it is.

Then call your GI and tell him what your regular doc said to do. Whenever I get an infection they have me hold off on humira for an extra week based on what my symptoms are doing.
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I have an appointment with my regular doc in about an hour. Thanks!!
 
i had my first 4 injections of Humira last week and have another 4 next week. i havent noticed any change at all other than my bowel movements are horrible. (sticky and hard to whipe away) which has never been a problem before.
 
Nica said:
Doug,

You can check into abbotts prescription help area, they might be able to assist you getting your insurance to cover it or covering quite a bit of the costs. You also might want to try the other meds to see if they work for you. If Asacol will work to get you out of a flare then why would you want a biologic?
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Nica

This has been such a long drawn out process. 4 years ago I was misdiagnosed and since then the Crohn's advanced to the point of needing surgery done. I was almost completly blocked. I have had 3 doctors recommend starting on Humira, because of the severity of the disease, but the insurance company doesn't want to flip the bill for it. (Can't blame them for that.) I have been prescribed sulfasalazine (sp?). I will also be keeping a log on problems/symptoms so I can document what happens with this med. I really doubt that something less than a biologic is going to work.
 
Hi folks,

It's Saturday and I can't get hold of a doctor or find a number to call for advice and I don't want to go to the hospital just to ask a question. Hopefully someone here can help!

I have just got back on holiday wednesday night and gone from 30c heat to 3c coldness and within 24 hours have developed a cold. Blocked/Runny nose, Sneezing and coughing.
I was due to take my Humira yesterday, but thought it might make things worse.
Tried to phone my doc, but she had a day off so left a message for someone to call me back yesterday which they didn't.
I asked the pharmacy and they wouldn't serve me any cold meds after I explained as they said I need to speak to a doctor first.

Is there a Humira helpline I can phone in England? I've googled it, but cant find one.

Should I do my injection or wait until I see a doc on Monday?
 
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How much of a cold? Do you have a thermometer to take your temperature? The advice I've been given: if you are running a high temp then delay and contact your consultant/IBD nurse/GP. If you are only slightly high then you are okay to go ahead.
When I've had it whilst with a cold and slight temp I've been fine. Flu is a different matter and you would need medical advice.
 
beth said:
How much of a cold? Do you have a thermometer to take your temperature? The advice I've been given: if you are running a high temp then delay and contact your consultant/IBD nurse/GP. If you are only slightly high then you are okay to go ahead.
When I've had it whilst with a cold and slight temp I've been fine. Flu is a different matter and you would need medical advice.
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Thanks for your reply!

I'd say it's only a mild cold. Not sure if I have a temperature. I would guess that I don't.

Is there not a Humira hotline? I thought there was. I've looked through all my stuff, but cant find it or remember where I saw it?
 
Don't know about a Humira hotline I've only been told to contact my consultant/etc.
Sounds like you are fine to do the injection.
 
I have a cold, virus who knows what. My doc told me to wait till I felt better to take humira. Sore throat, ear ache and sinus headaches.

I can only find a phone number for the US.
 
Well I start Humira on Friday...I am very excited and nervous at the same time. I heard the sting is like lexpro (or however it is spelled, that blood thinner stuff). I had to take that stuff twice a day, every day for 2 months. Plus I get it any time I am in the hospital and it at times will sting but not much. Is that what it feels like?
If that is it then yay. I think that is the part that scares me the most that I am worried about the pain. I have to do four shots and if the first one hurts really bad I will not want to do the other three,
But I am excited to see if it works. For some crazy reason I started to have bowel spasms and OMFG they are killing me. I just got used to some of the other pain but then this...OUCHIEE
My previous GI Dr told me I had to come in to do the Humira but I saw the other Dr at the practice today and he asked why did I come in if I self injected before. I explained it was because Dr ______ said to. He said there was no reason to come in and it was okay to start on Friday not today ( I still have two more days of work and I didnt want to deal with the drowsiness at work). He also was the one that told me about the bowel spasms and the fact that I have a stricture and a partial obstruction at all times. Any time I asked my other Dr he would just say, Yeah it is part of Crohns and not tell me what was happening. I asked this guy if he would please be my Dr and he agreed.Yay again. He is much better and actually explains what is going on, and doesnt just say this is what happens. I know it is what happens but I would still like to find out what is happening. sheesh.
Anyway..back to my main question. Does it feel like the blood thinner stuff?

Any help would be great..
thanks,
Angie
 
Hi Angie,

I don't think it feels the same, but it's no worse. For me sometimes it stings, sometimes it doesn't. The worst part is the anxiety just before you do it.
I'm sure you won't find it to be much of an issue.

Good luck!
 
I am not sure why your doc didnt want you to come in for your first injections.. what if you have a reaction to the medicine? You may be able to do the shots yourself but that does not help if you have issues once its in there. Make sure you are not alone for the shots.

I have never had that medicine but humira stings while its going in. My first shots didn't hurt at all though. Now I cuss like a sailor everytime. Make sure you take it out of the fridge for about 20 minutes before injecting, many people ice the area before they inject as well.

Good Luck!
 
well i just did my four shots... and completely took your advice Nica and cursed like a sailor..lol..I did find out it hurts way more in the leg, but that is more than likely because im used to getting shots in my stomach from the two months of levonox twice a day... my husband is here to keep an eye on me incase any adverse reactions..and now it is time to keep my fingers crossed that it works...i do know that my stomach was not happy it was talking something up a storm..lol
Thanks for the advice Nica..lol..and Hungry when i did it in the stomach you was right it is sorta like it but not totally...
 
Did my last shot for 2010! Minimal begging, few tears and much better than the last time. Thanks for all of your help. Tylenol did help my son out with the post shot pain bubble.
 
My doc has me on Lialda but wants me to try Humira because the Lialda isn't working. Truthfully, I'm scared to death. I read about all the side-effects and it frightens me. I don't know what else to do other than try this. I have patchy ulcers all through my colon and ileum.

What made you decide to take the risk?
 
How Wonderful!

In-N-Out Burgers. I can't even imagine. Seriously, this alone might help me make the decision...

MetalCyborg said:
woot! Ive been on Humira since January this year, and had to keep upping the dose because it wasn't really helping. At 3 shots every 2 weeks, I am in remission for the first time since I was diagnosed 4 years ago. I got to eat an In-n-Out burger with lettuce and tomatoes on it the other day!! it was awesome.
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hi Carollco,

I decided to take the risk because the pain is horriable. I do not go to the bathroom alot, at most 5-10 times a day, but the pain and accidents were to much for me to handle. I took my first time on Friday, was still in crazy pain on Saturday, but then from Sunday till Wends no horriable pain. I had pain just nothing bad. I didnt get the horriable pain until today. I am hoping that it is working because I loved just "normal" pain. I was happy and chipper and actually able to do my christmas shopping and go to the grocery store.

Anyway that is what helped me decide...plus after reading the effects and possiable effects I spoke with my husband and asked him if I ended up loosing my hair can I go on a ban-danna/scarf shopping spree. In my house we deal with it with humor. Keep us up to date on what is going on and know that we are here to talk if you need to.

Angie
 
I'm on humari for about 3 months now and feel that it has stopped working. I just don't feel as good use to, have no energy or ambition
 
sven: Are you on one injection every two weeks? as you may be able to go to one a week - talk to your consultant.

carollco: All drugs have side effects and the manufactures have to list everything that happens in a trial. Humira is pretty well known about these days, hence the screening tests before getting it.
 
beth said:
sven: Are you on one injection every two weeks? as you may be able to go to one a week - talk to your consultant.

carollco: All drugs have side effects and the manufactures have to list everything that happens in a trial. Humira is pretty well known about these days, hence the screening tests before getting it.
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I'll havr to talk to him about that.
 
Bad abdominal pain

I started Humira almost two weeks ago. I had the initial 4 shots on the first day. In two days, I'm due for another two. I've had Crohn's for 9 years. Oddly enough, I've rarely had bad abdominal pain as one of my symptoms. It's usually been pretty mild. Most of my problems have been anal fissures, rectal pain, fevers, anemia. Now that I started Humira, the rectal pain is nearly gone (wonderful), and I'm getting energy back. But I have these terribly excruciating gut pains off and on all day long. It's sometimes impossible to lay down on my side. It even hurts to walk. The pain usually builds as the evening nears. It feels like it's my entire gut, and it is most painful in the lower abdomen. I feel bloated, like I just want to pass gas but can't. GasX doesn't help. Percocet helps a bit, but I'm trying to get off of those. When I go longer without the Percocet, the pain is awful. Could it I gave it four days, and it hasn't gone away. I called and left a message for my doctor's nurse today to give her the update. I should hear back later. Any thoughts on this? What could be happening? Should I just be patient and wait for the Humira to do its thing?
 
pjr9f3 said:
I started Humira almost two weeks ago. I had the initial 4 shots on the first day. In two days, I'm due for another two. I've had Crohn's for 9 years. Oddly enough, I've rarely had bad abdominal pain as one of my symptoms. It's usually been pretty mild. Most of my problems have been anal fissures, rectal pain, fevers, anemia. Now that I started Humira, the rectal pain is nearly gone (wonderful), and I'm getting energy back. But I have these terribly excruciating gut pains off and on all day long. It's sometimes impossible to lay down on my side. It even hurts to walk. The pain usually builds as the evening nears. It feels like it's my entire gut, and it is most painful in the lower abdomen. I feel bloated, like I just want to pass gas but can't. GasX doesn't help. Percocet helps a bit, but I'm trying to get off of those. When I go longer without the Percocet, the pain is awful. Could it I gave it four days, and it hasn't gone away. I called and left a message for my doctor's nurse today to give her the update. I should hear back later. Any thoughts on this? What could be happening? Should I just be patient and wait for the Humira to do its thing?
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The way I was told that the injections enter your blood system in matter of hours. Thats odd, maybe your one of ones that it doesn't work for? I have been on humira for three months and it was great but now I don't feel it is doing anything. You talk to a GI doc or a family doctor?
 
sven said:
The way I was told that the injections enter your blood system in matter of hours. Thats odd, maybe your one of ones that it doesn't work for? I have been on humira for three months and it was great but now I don't feel it is doing anything. You talk to a GI doc or a family doctor?
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It was my new GI doc I talked to. He said it might still be too early to tell. He's encouraged that my ulcers and fissures have almost completely cleared up after nothing worked for six months with my former GI doc. He's also encouraged that I have an appetite again and am putting on a couple of pounds. He said it's possible that I could be experiencing the pain because I went from eating nearly nothing for two weeks to gorging on food after I started Humira (a lot of it high-sugar, high-carb). He also said it could be that I was taking four or five Percocets a day and then stopped them cold turkey. So he said to take one a day and try to wean myself off of them. I take my next two shots tomorrow. He wants me to call him before I take my maintenance shot in two weeks. According to him, I have a long way to go. My bloodwork showed my inflammation numbers above 25, and they're supposed to be below 10. He said if I'm in lots of pain or if my inflammation markers haven't gone down at the six-week mark, then the Humira is not going to work. So I'll hang in there for now, I guess.
 
Hi everyone,
I started taking Humira on Friday. I'm from the UK and it was only 2 shots for me, 40mg each. Are they 20mg shots in the US? Because a lot of you seem to have had 4! Or maybe you just needed higher doses. I'm new to this drug so I have no idea lol.
I'm aware that it can take a while to notice the effects, but how long it take for you guys? Feel free to stop reading here and answer this simple question if you don’t want to read an essay about my worries ;)
I know it’s too early to expect to see improvement yet. I'm guess being impatient because Infliximab/Remicade (whatever people call it) got me out of my most severe flare up within 24 hours! Spent 6 days in hospital getting worse on Hydrocortisone shots followed by Pred, had an MRI that confirmed my Doctor's suspicion that I actually have Crohn's and not UC (it presented itself like UC in my first sigmoidoscopy because the inflammation was limited to the rectum), and so I was suddenly a suitable candidate for Infliximab and the improvement the day after the first infusion was huge. I was discharged too days later.
I'm now experiencing a less severe flare up but we're giving Humira a try rather than Pred because my Doctor would like to avoid them if we can. I’d probably have chosen Infliximab again but it means coming home from University to have the infusions so I guess he thinks this is more convenient for me. I'm currently only going to the toilet about twice a day, but what comes out would hardly collect in a sieve lol... it's barely solid (to anyone standing outside the bathroom it sound like I was going for a piss!) and there's usually a lot of blood (taking iron to avoid the anaemia!). I don't like to complain because I'm sure there are many people here who'd kill to only be going twice a day! But I can only see it getting worse if the Humira doesn't take effect soon (previous flare ups have seen me going about 10-12 times a day) and I'm 6 months from completing a University degree... I'd really like to get that out of the way so that I'm 'free' to be unwell lol. My last flare up saw me getting no work done for a couple of weeks, followed by a 9 day hospital stay, followed by 2 weeks resting at home... it was a hard slog catching up with my course mates and I really don't want to have to do that again when I'm so close to finishing!

So basically I should probably resort to steroids to avoid getting really ill if Humira doesn’t work, but I think waiting as long as 3 months is unrealistic… I’ll be in hospital by then! When did you start to notice the drug having an impact?

Apologies. I talk too much both in person and online haha.
 
Hi Ian.

So you had Infliximab whilst in hospital and now your out you've changed to Humira, that correct? It may well explain only getting two initial loading doses as the two drugs both target the TNFalpha antibodies.

Humira/Adalimumab will take a while to ramp up. It's got a lot of work to do to let your bowels heal from the inflammation. Be very careful of taking iron as that can cause stomach and bowel upsets of itself - any form of iron tabs give me gastritis.
As to your degree and getting a flare, perhaps keep off the steroids but at the first sign of getting ill you go for a short course to head off the flare.
 
Hi beth,

Yes I had Infliximab in Febuary during my hospital stay, then two more infusions (2 weeks later and 6 weeks later), so my last one was at the end of March. So yeah that might be why I had a lower loading dose. I'm also on 6MP now which I began taking in June.

I'm only taking 2 iron tablets a day and don't normally have a reaction to them (well besides the charcoal-looking poo lol) but thanks I'll keep that in mind! I'd love to avoid steroids, especially as I'm not going to let my mum put up my Graduation photo if I've got a swolen chipmunk face in it haha, but ultimately my health is more important so I might have to. Fingers crossed Humira will work though :)
 
Ah right. 6mp plus Humira ought to do good things for you. And bare in mind if it doesn't work for you well enough at the usual maintenance of one injection a fortnight there is scope to go up to one a week - the difference that made for me is soooooooooo worth it!

You've put in all the work for a degree, hang in there and do anything and everything you need to graduate. Good luck with it.
 
I just did my second round today of Humira..Feeling a lot better and tapering off of the Prednisone (now at 10mg/day) but for some reason my tummy is kind of swelling- a little like a pregnant stomach. I asked my doc and he said this might be due to the inflammation decreasing...Anyone have this?
 
Hello,

Normally I rotate my injections as recommended, but since having a shot in the thigh that really stung I've developed a fear of doing it in my thighs.
The last 2 shots have been in my stomach. (I do one shot every 2 weeks).
I know the pain isn't that bad and it would all be over in a few seconds, but it's the build up/anticipation that's freaking me out. I have been sitting here near 2 hours now watching tv trying to take my mind off it and just do it, but keep bottling out.

Have any of you used humira long term and just stuck to doing it in the stomach?

What's the best way to over come this irrational fear? I tried thinking of the consequences of not taking it. Remembering crohns pain etc.. I've never liked needles and from all the injections I've had these last few years, now it's got a bit out of hand.
Although I don't have too much of a problem with my blood tests. I thinks that because someone else does it and it doesn't sting.

Is the humira gonna be ruined now it's been out opened in a warm room for 2 hours?
 
Hey guys... So, guess you could say I'm new here.. I have been on Cimzia for the past 4+ months, and it did probably more damage than good. I went to my GI doc today and we both agreed that I should be taken off of it, and started on Humira. Seems to work for a majority of patients. One question, though: is it a self-administered shot? Just curious, because when I was on Cimzia, they sent a nurse out to my house each time to administer my shots. thanks guys!
 
Hungry: I always do my Humira in my tummy - the loading doses didn't hurt too much so I just never tried my thigh. And no it wont be ruined being out for 2 hours but you shouldn't make a habit of it.

Sarac: yes.
 
beth said:
Hungry: I always do my Humira in my tummy - the loading doses didn't hurt too much so I just never tried my thigh. And no it wont be ruined being out for 2 hours but you shouldn't make a habit of it.
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I ended up getting my doctor to do it this morning. Got it done in the thigh. Didn't hurt, but was embarrassing that I had to get my doc to do it. Was sweating and paniking. Bit worried that the bit inside didn't go yellow, so need to call up the my nurse just for piece of mind and make sure it's nothing to stress about.
 
I got paranoid about ruining my injections because I transported them in a mini-fridge for a 3 hour car journey and when I checked on them at the destination, the fridge temp was between 1 and 0 degrees C (according to the lit you're meant to keep them between 2-8 degrees C). The specialist nurse told me they should be fine though?

So I guess that fact that I've not really seen any improvement after a month of taking Humira is down to the fact that it's just not working lol :( Maybe it takes longer. I know it can take up to 3 months for the FULL effects to be felt, but seriously, 1 month and still getting lots of bright blood with every b/m? I think it's a dud...
As of the Friday just gone (my shot day) I'm now up to weekly injections, and will soon have some new ones delivered that weren't in my mini-fridge and possibly affected (even though I've been told this probably didn't happen). So I'll give it a bit longer, but how long do you think my GI will wait before admitting defeat and just putting me on Pred? As much as I hate it, it would have me down to 1 b/m per day after about 3 days of taking it... I've been flaring since late November so it's looking pretty tempting right now!

On the plus side I've never had any issues doing my injections, I consider the 'pain' to be about that of a small pinch (and I'm a complete wimp with a low pain threshold!) and never have much hesitation when it comes to injecting. I do mine in my stomach, the top of my thigh is way more firm/solid and I imagine that would hurt more.
 
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Okay, I feel like a total wimp here. The injection itself was nothing but it burned like battery acid to me. This from a person that walked around three months with a broken ankle & when the doc asked me why I didn't come in earlier I said it felt like a small twinge. I was on it for 6 months & saw no difference.

When I was taking them, we experienced hurricane Ike. We were without power for over a week and no ice either. I called the manufacturer & they told me as long as you don't put it back into the fridge, it is fine. It still sounds not right to me. It is a biologic after all.

Michele
 
Ian said:
So I guess that fact that I've not really seen any improvement after a month of taking Humira is down to the fact that it's just not working lol :( Maybe it takes longer. I know it can take up to 3 months for the FULL effects to be felt, but seriously, 1 month and still getting lots of bright blood with every b/m? I think it's a dud...
As of the Friday just gone (my shot day) I'm now up to weekly injections, and will soon have some new ones delivered that weren't in my mini-fridge and possibly affected (even though I've been told this probably didn't happen). So I'll give it a bit longer, but how long do you think my GI will wait before admitting defeat and just putting me on Pred? As much as I hate it, it would have me down to 1 b/m per day after about 3 days of taking it... I've been flaring since late November so it's looking pretty tempting right now!
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I started on it in June 2010. It took a few months and now I feel like I don't even have crohns. I can eat and drink whatever i like. My weight is back to pre-crohns and I feel healthy. I still go to the toilet more oftan than what was normal to me before. But it's not really a problem.

but as crohns if different for everyone, I can on advise you give it a chance.
 
Ian: I transported my injectors around up to and around Scotland last winter in a portable cold box for 12hour journeys @2c and they were still good.

Sounds like you are way past any drugs, Humira and friends are very good, but they cant work miracles. As you are still bleeding I predict surgery is not far off...
 
See, this is the weird thing. This isn't a major flare (or at least it doesn't feel like one). I feel very well in myself; no abdominal pain, no gas, no nausea, no fever, no weight loss. I don't even feel tired because I'm taking iron suppliments which appear to be counteracting the blood loss (I'd normally be aneamic by now). The blood can be alarming, but I think it looks worse than it is - it's clearly coming from just before the anus (I can feel the inflammation there when I go to the toilet) so it's not mixing with stool - it's fresh and bright. I'm not even going all that frequently (3 times today). The flare feels minor, but persistent.

I'm not beyond medication yet because steroids still work, we're just trying to avoid a 2-3 month course of them because of the side effects. Remicade also worked well but I only used it the once to treat acute symptoms because it wasn't available for long-term use at the time, so that could work again.

Last flare I had which was my worst, they changed my diagnosis to Crohn's Colitis because the inflammation was in patches throughout the large intestine (I don't have any in the small intestine and never have). Initially I was diagnosed with UC (proctitis specifically) because it was limited to the ascending colon - and this flare feels like those earlier ones rather than my last one (which was way more severe). It's basically presenting like Colitis again, rather than Crohn's, and I wonder if that's why Humira isn't working; it's not really used for treating UC I don't think. But this is probably just me trying to play doctor and getting it all wrong lol.
 
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Just started Humira today - so far so good ( knocking on wood). Used the pen and did (2) in each leg and was totally amazed at how easy it was. I am really really hoping that this is gonna be the thing to relieve the pain and symptoms. :::Crossing fingers:::::
 
Alycat said:
Just started Humira today - so far so good ( knocking on wood). Used the pen and did (2) in each leg and was totally amazed at how easy it was. I am really really hoping that this is gonna be the thing to relieve the pain and symptoms. :::Crossing fingers:::::
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Amen to that! I'm gonna start this upcoming week. Best of luck for the both of us!
 
Just got my first 4 loading doses (pens)... 2 more in 15 days. I did them all in my stomach though, because I guess I've read too many horror stories about how painful it is in the thighs.. eek. Hopefully this will go over well, Cimzia was no use and I am steadily losing hope. My GI said he's had people see results in as little as 2 weeks sometimes. How long did it take you guys to get results (if you are doing well on it, that is.)?
 
Yup, I certainly saw changes within two weeks but don't get your hopes up for miracles just take each day as it comes.
Some people find injecting into the thigh better. Me, I always do tummy because it doesn't hurt too much and I'm a wimp to try elsewhere.
 
Wondering if there's anyone in northern Ontario who's in need of a pre-filled Humira syringe. My doc took me off and put me on Remicade. Stuck with one dosage I have already paid for.... Message me if interested.
 
beth said:
Yup, I certainly saw changes within two weeks but don't get your hopes up for miracles just take each day as it comes.
Some people find injecting into the thigh better. Me, I always do tummy because it doesn't hurt too much and I'm a wimp to try elsewhere.
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Yeah, I'm too much of a wimp to do it in my thighs, too... too many horror stories. Not too bad in the tummy, though!
 
Just did my 2nd does yesterday (both on my belly). the injection hurts, but it is well well worth it, if it helps ease crohn's disease. I actuallu was expecting it to hurt more, a shot only last about 5 seconds, and it's done.
 
Please excuse me, I just need a moment to whine and feel bad for myself. No reply necessary. It's time to do my shot (actually, I'm a day overdue), and I just DON'T WANNA!!! Ughhhh!!

I know - I know I have to, I know it makes me feel better, but dammit - I am SOOOOOOOOOOoooooooooooo not in the mood!! :p Just feeling cranky, I guess... Blarggggggggggggggggooiyuaoihoagnroungggfffffffffffffffffffff. *pout*

OK, off I go...
 
After 3 1/2 months some relief from the abdominal pain. it was so bad I decided to retire(I'm 64) just working part time now.
I did my 4 loading doses in the belly wipe, pinch some fat up and fire away. I sit down on a padded chair in the bath room.
My daughter was on humira for about a year and I gave her injections in the thigh. She didn't like needles after a misfire that sprayed all over her apartment. She had to quit because of some odd infections and a psoriasis like out break on her abdomen.
I've had no bad reactions.
 
I just started on Humira and already I feel better. It's been one week since the 4 loading doses and my constant fever has dropped from 101-102 to 99-100 which in my book is HUGE blessing. I'm actually looking forward to next week's two doses.
 
Hi all, I'm starting Humira tomorrow... both excited and a bit anxious, unsure of what to expect.

I've had some general advice from the doctor and a nurse, but will need a lot more info - what to do, what to avoid, how to carry it, what if...... etc etc etc.

Can anyone recommend a comprehensive web source of info?

Fingers crossed and hugs to all!
 
They gave me a case I can carry it in. Humira also has to be refrigerated. I've six pens in the refrigerator now. Thursday is my next two doses. I have to say that within one week, the horrible pain is gone and my fever is down from 102 to 99. I really think it's working. I'm scared to believe it, but I think it is.

How did it go today?
 
Well, it's done - I'm on Humira as of this morning! Hopeful that things will improve from now on, the last year has been very very difficult. 4 shots in the tummy, in a row, were very painful - but this is the kind of pain I can handle!
Just wanted to share my relief and optimism. Thanks for all the support all these months!
 
Carrollco - Glad to hear you're finding immediate relief. Mine worked pretty quickly as well. :)

Nomad - Keep up the optimism! :) You've got the hardest part behind you though! You never have to do 4 shots in one day now. Hope you find relief from Humira!
 
It took me about 5 days before I noticed a difference so if it doesn't happen automatically, hang in there. Dang, I actually had an (almost) normal BM today! The first in 6 years!

My husband had to quiet me down. He was afraid the neighbors would hear:hang:.
 
I'm starting Humira soon and am quite nervous about it. I'm not a fan of the shot idea...and the docs haven't even told me about a loading dose yet! Yikes. I'm in the midst of the worst flare I've ever had in 20 years with this disease and don't even want to know how much they'll prescribe for a loading dose! LMAO

Mostly though, I'm concerned about a possible allergic reaction. I had to be taken off of Remicade because after 3 violently painful infusions, they finally decided I was allergic to it & stopped it. That was an experience I am not excited to repeat. I just pray that I don't have the same reaction to the Humira.
 
my guy got his 1st 4 doses last wednesday. says he has no relief from the pain. I was so hoping this was a wonder drug and he would wake one morning and say "" OOO i feel great "". yea, not happening so far.

He is giving himself the next dose next Thursday. After reading how many of ya all are on this drug I dont feel like we are all alone here in NJ.
 
BigRed, Humira is not mouse/human chimeric so allergic reactions are unlikely (although not guaranteed/blah/blah). The loading regime for Crohns is usually 4 doses over one or two days, then wait two weeks and another two doses. Then on to fortnightly single injections. It's not the greatest experience injecting yourself, but you soon get into the swing of it. And if it works for you it's really no bother.

PnaG: yeah it can take some time. It's not a miracle, it can't work over night, but hopefully you'll see something in days if not a few weeks.
 
I had relief from pain on the 5th day. I won't say all the pain is gone, but it is certainly better. I can live with this. The loading doses freaked me out, but I gave them to myself just fine. Last night I had to give myself two shots and after hemming and hawing around the house for several hours, totally freaked out, I did it. I do have a large bruise from one shot, I have no idea why, and nothing on the other side where I gave my other shot. From now on it's one shot every other week and if that doesn't work I can go to every week.

The greatest thing is for the last five years after I cleaned the house, I'd have to nap and for sure would be no good for the next few days. I have Crohn's arthritis too and sometimes I could hardly walk the pain was so bad. Every freaking joint hurt.

Today I cleaned the house, cleaned the back deck, then squirted down the front yard and I STILL HAVE ENERGY to write this note. For me that is a miracle. I must say I'm still on Prednison and 6MP so I don't know if the 6MP has kicked in more or the combo is working. Whatever, I'm happy. I never thought my life could be this way again.

I pray that some of the more serious side effects won't bother me, but I had to look at the quality of my life and it sucked. I mean, who wants to spend their days in the bathroom? And the pain was horrendous.

I'm not perfect, I know I still have Crohn's, and perhaps I won't ever be 100% again, but what this has given me is hope which I really was ready to give up on.
 
Quit Humira

I took Humira for 1 year and it helped the Crohns but I lots of side effects. Got enemia, shingles, walking pneumonia, high triglycerides. It just zapped by immune system. Then tried Imuran and it made me horrible ill so now I've been on Entocort for 1 year and it has been good but my doctor seems to be worried about me staying on steriod for too long.
 
Anemia suggests it wasn't controlling your crohn's well enough (unless you've had surgery). Shingles and pnuemonia, possibly resurrected latent infections, which are a hazard of all these anti-TNFalpha drugs. Shame it didn't work out for you.
 
Hey people, here´s an update of how things have turned out since my previous(and first) post last summer.

1 day or so after the first injection I got at small red petechiae on my shin. It didn´t bother me that much at the time although I did tell my doctors about it(who in turn didn´t seem to worry about it that much either). My rheumy just said that it was something that would probably disappear over time, so I continued with humira.

The effect kicked in really fast on the SI - pain (which decreased from 8/10 to 0/10 in about 2 days). The stomach also improved and after 2 or 3 months or so I managed to drop the budesonide enemas for the first time ever! (had been taking them for 2 years in a row every single night so I was so incredibly tired of them).

My private life improved as well in parallell with the new drug: got a new girlfriend and we just celebrated our 6 months anniversary the other week :) (As you probably understand it was so wonderful not having to take an enema every night when dating her, which was one of the main reasons that I decided to try humira in the first place)

So what happened with the petechiae: They just got worse, and spread out over both arms, feet and legs during the months following. I realised that something wasn´t the way it should be and again talked to my rheumy. He adviced me to take a skin biopsy which I did. It didn´t give anything, probably because of the steroid cream that I used to get rid of them. So in late February I realised, after reading more about leukocytoclastic vasculitis, that this was probably what I had developed and stopped taking humira.

The Petechiae then went away(with the help of the steroid - creams, of course). The petechiae then came back some weeks later despite that I was no longer on humira. I therefore convinced my rheumy that all necessary tests should be taken, to investigate whether I have internal organ involvement as well(renal, lung, heart etc). I will leave blood samples this coming friday. Now I have a period with petechiae for the 3rd time since cessation of humira, which of corse scares the hell out of me.

As far as I have understood by reading published articles regarding this it might be necessary to take high dosage prednisone and/or metotrexate if skin symtoms does not improve by cessation of anti TNF - therapy which sucks since my bone density is low already and I fear diabetes because of previous high - dosage prednisone treatments. Then again, I do realise that it is worth it if it saves my kindeys(if they are affected)...

So what is the message I want to spread here: If I could turne back time I wouldn´t have started on humira. I would have saved it for a situation where I was critically ill and the only alternative was a stoma. This was not the situation I was in when I first began treatment.

I´m just crossing my fingers for this vasculitis to go away permanently, and I would appreciate if anyone of you know a forum or thread where anyone who has been in my situation has said anything.

Take care.
 
Wow! Scott, sounds like you've really been in the wars with it. If you do a google search for 'leukocytoclastic vasculitis humira' you'll find other people dealing with it too.
Other than that I don't think I'm of much help. I've been lucky with it. Not heard of such drastic problems before.

Even if I had heard of those problems before going on it, I would have done so. The chance to kick my Crohn's into submission would have been too great to miss. All drugs have side effects and unintended consequences and you have to choose which side of the balance you're going to go with. If I get problems later I'm not going to look back with regret.
 
Been on Humira since December, I was also put on Entocort @ the same time. Thought it had really sorted my Crohns out but sadly as I've come off the Entocort the disease has come flooding back. So sadly Humira hasn't worked for me so far.
 
Beth, no fortnightly. My case is up for renewal soon & my next appointment is 1st June. Either weekly shots or Methetrexate I reckon.
Whatever they decide it has to be quick because my strictures tend to close up very quickly so I'm on borrowed time.
Rgds
 
Made it through insurance renewal. Anybody know the weight limit to go from one pen dosage to two? My son is growing and I suspect we are under the dosage but he is in remission.
 
Zoodles, if he is on the 40mg pen and in remission then he is best not to go to weekly. However if he is on the 20mg children's dose then it looks like the weight limit is 66lbs or 30Kg.

Grant, weekly Humira gets my vote. MTX is nasty horrible stuff that knocked me for six - I'm just everso slightly biased against it!
 
My son has his first 2 injections tomorrow afternoon. He is ready for his skin tag to go away, and actually wanted the shots today. That is saying a lot for someone who screams whenever he gets a shot!!
 
Hi all. I'll be starting on Humira soon and like others I'm a little nervous but excited. I'm hoping that it will help to heal up two perianal fistulas that I have. My problems have been so long a drawn out that I'm not really that trusting in something working. Though I have only been seeing a GI since Feb this year. He wanted to start me on Humira straight away, but to get government funding (in Australia) for it we had to try and fail at other drugs first. So for the past three months I have been on Metronidazole/Flagyl (yuck!) and Azathioprine 100mg p/d. I think the aza has helped my pains in the gut and to tolerate food better, but I still have the same drainage from the fistulas. Went to see my GI last week and I am to stop the flagyl YAY! and he is getting the application sorted for the Humira. So I'll be on that and aza.
Has anyone else had much success in closing fistulas? Oh and I have setons in both fistulas. My colorectal surgeon doesnt want to using cutting ones to preserve the muscle. I would always be worried that when they remove the setons, it would heal on the outside first and flare up again, resulting in yet more surgery :(
I'm not really that worried about the needles etc, if it has to be done that way so be it, I just really want to get the results my GI and I are hoping for. I must admit that he was really happy to be starting my on it.
Hope everyone is well xx
 
My son has a fever and we are going to delay his Humira. It will be a week late due to my travel schedule. Has anybody delayed their dose by a week without impacting their remission?

He is comfortable with the shot only if he holds my husband's hand while I give the shot. So, it's a 3 person plan.
 
I really wouldn't want to delay by so much. Can your husband do the shot whilst son say hugs a teddy bear - assuming he's that young!
 
He's still running a fever. So even if it breaks tomorrow, we have to wait 48 hours for shot or Sun at the earliest. I hate delaying for any reason and hope my husband and son will go without me but doubt it
 
I hope your son feels better soon! I doubt very seriously that my son would let my husband give him his humira, and I definitely know my husband would not want to give it to him! My husband has to leave the examining/hospital room whenever blood work or an iv has to be done.
 
After reacting badly to Remicade, I am now officially a member of the Humira Club.

I had my first 4 doses this morning. The nurse did the first two in my stomach and I did the second two in my leg. I have to say, I found the stomach to be very painful and will definitely be opting for the leg as the site for injection in the future - maybe because I have a slightly more 'meat' on my leg than my stomach! haha.
Although I think the syringes had come straight from the fridge and so were still cold when they were injected, which probably made it hurt a bit more.

Feeling really tired at the moment though and had a bit of a headache earlier, but apart from that, not too bad.

Just keeping my fingers crossed for some improvement.
 
Good luck bc. I always leave my pens out of the fridge for 20mins or so to warm up and inject in my belly as I'm too much of a wimp to try the leg!
 
I am trying to get my son to try the belly route but he wants no part of it even though the leg injection is very painful.
 
Welcome to the club!

I just did the loading doses last week. I found the legs to be much more painful.
 

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