Humira Club Support Group

[NicoleKS]

Had my second Humira shot 2 days ago and have had a terrible headache since. I didn't have any symptoms following the loading doses but this headache is not shifting. My legs also feel very weak and I'm generally very tired.

Costas

I had a major headache after the loading doses. I did my second set the other day and didn't experience any side effects....! I've felt exhausted these past few weeks but I'm not sure from which med! I hope you are feeling better soon!

 

[beth]

Costas, that doesn't sound great - contact your consultant....

 

[Momof2EW]

I do mine on Wednesdays as well. Did mine yesterday though. =)

Yeah my 2nd doseage with the 2 pens is this Wednesday. And then I think my GI will have me doing them every 2 weeks depending on how well I take to it all.Hopefully not once a week.

 

[Tinkerbell]

Thanks to everyone who suggested ice cubes. I used an ice cube on my leg for today's injetion. It wasn't half as bad. It hurts when the fluid goes in but the initial injection was not that bad!

THANK U!

 

[Momof2EW]

Thanks to everyone who suggested ice cubes. I used an ice cube on my leg for today's injetion. It wasn't half as bad. It hurts when the fluid goes in but the initial injection was not that bad!

THANK U!

Im def going to try this next time!

 

[Zoodles]

We started off using ice cubes but my son would just panic while we waited for the ice to numb. Now we use EMLA and barrier patches to numb the injection site. I slap one on while he is still sleeping and wait for him to wake up before shot. It's seems to be working- no more begging not to do the shot.

 

[jim bell]

I have had Crohn's for the last 28 years. The best medication for me was Humira and was in remission for 6 years. In the spring of 2009, I started bleeding and had a serious flare. My doctor took me off the Humira and was put on Cimzia. Cimzia hasn't done as well as I am currently in a flare.

My question is has anyone been on Humira, taken off it, and then put back on it again? We don't know if I built up anti-bodies against it and just assumed it. I am hoping I have the same success as last time, but my Crohn's is in the duodenum area where it has never been. It has always been in the lower bowel area which my endoscopy and colonoscopy showed today.

 

[Crohn's 35]

Hey Jim, welcome to the forum! :bigwave: many people here to answer your questions but we would love to see your story and tell us about you on your own thread. YOUR Story thread is at the begining board. Hope you join us and we can all greet you!

 

[Milehigh]

Another question for you, Lovies!

Anyone have eye symptoms after Humira? My eyes have been so weird since the loading doses. First they felt dry, and felt like there was something in there. Kind of thought it was sinuses because my eyes would hurt with movement. NOW my right eye is watering like crazy. Like all of a sudden I have tears running down my cheek. Tis strange and annoying; as I like makeup and not looking like I'm crying.

Anybody hear of such a thing?

 

[beth]

Nope, I've had very few side effects from the Humira. It could just be coincidence. Best get a doc to have look...

 

[Scifimom]

Well, I guess I will start posting here from now on. My GI prescribed Humira yesterday and my first loading is on Friday. Being Greek and having universal health care here I dont have to approve anything, I just go to the Farmacy, give my prescription and get my drug. I had the option to choose between Remi and Humira and I chose Humira, cause I am in a very stresfull period of my life work wise. The company I work for is cutting out on staff and I want to prove that I can give my 100% at work. That means no sick days for a while.

I am scared to death about the drug, what should I expect?

Scifimom

 

[NicoleKS]

Well, I guess I will start posting here from now on. My GI prescribed Humira yesterday and my first loading is on Friday. Being Greek and having universal health care here I dont have to approve anything, I just go to the Farmacy, give my prescription and get my drug. I had the option to choose between Remi and Humira and I chose Humira, cause I am in a very stresfull period of my life work wise. The company I work for is cutting out on staff and I want to prove that I can give my 100% at work. That means no sick days for a while.

I am scared to death about the drug, what should I expect?

Scifimom

Welcome to the Humira club!! What specifically are you scared of.....? I'd start by reading through this thread. =D

 

[beth]

Hi Scifimom, I can understand you're scared I was too as I had failed all the previous drugs, one quite spectacularly, and it felt this is the last one. But really, as these things go, it's not bad. And the good that it can do is, well in my experience, miraculous. It's well worth giving it a try. Have you been screened for TB, or Hepatitis? Do you have a specialist nurse you can talk to about your fears?

 

[Scifimom]

Hi Scifimom, I can understand you're scared I was too as I had failed all the previous drugs, one quite spectacularly, and it felt this is the last one. But really, as these things go, it's not bad. And the good that it can do is, well in my experience, miraculous. It's well worth giving it a try. Have you been screened for TB, or Hepatitis? Do you have a specialist nurse you can talk to about your fears?

Yes and yes, I was screened for TB, herpes, hepatitis, toxoplasmosis, Epstein Barr and cmv. All negative. I also asked four different GIs except my regular one (not nurses doctors).
Now things I am afraid of.

1) I will keep getting AZA along with Humira for at least 6 months, doesnt this mean I will be in danger of getting any virus or infection around? I am asthmatic and my asthma requires regular treatments I will be mpre vulnerable than just getting the AZA?
2) Allergic reactions, I am having the first injections at the hospital but still I have several allergies and I am afraid
3) Long term side effects what if in 10 years from now a big fancy doctor says "Well guys all those of you who got Humira, now get a free brain tumor as a bonus".
4) Outcome. I have a stenosis in my small bowel, if it is scar tissue I will probably get worst and need surgery AGAIN and I almost died last time
5) I am still generally depressed and angry and having a very stresfull time at work these days (layoffs) I am afraid that all the anxiety I feel will cancel any benefit I might get.

Scifimom

 

[beth]

Taking your points:

1) I am also asthmatic and since being on Humira it is much better. Previously I needed preventer from February through to November. This year I hardly need to use it and haven't finished one inhaler yet. I expect as your allergy response is dampened by the Humira/AZA you will experience less asthma.

2) It's fully humanised you are unlikely to get a bad reaction to it unless you are allergic to the other ingredients used to stablise it.

3) Yeah. It's my worry too. But right now it's the only thing to have put me into remission and keep me there. If my Crohns had continued as it was.... well I'm not sure where I'd be right now. I know my quality of life would be have been zilch. So the risk is worth it. IMHO, YMMV. I cant allay your fears on that one I'm afraid.

4) Any surgery has risks. Without the Humira/AZA you will probably need surgery much sooner. Surgery whilst on Humira isn't going kill you by itself. And it's not as if you would be the first to try so the surgeon would/should know what to do to mitigate the risks as far as possible.

5) Funnily enough, whilst my Crohn's was uncontrolled I was anxious as hell about the tiniest of things and completely unable to function at work. Since the Humira has kicked in I've been gradually getting back to my old self - and felt better in myself, and about Life/etc, than I have for years. I suspect my Crohn's was creeping up on me for a lot longer than the official diagnosis.

Well, whilst I can't banish your fears, or tell you I'm not concerned about the stuff either, I hope I have shed a little light.

Good luck with the loading doses, and it all goes smoothly.

 

[MikeinBklyn]

Scifimom,

I was TERRIFIED of Humira before I started.

Now, 5 months in, I feel great and have had no adverse reactions or symptoms.

I too have stenosis in the small bowel. I am asthmatic and have allergies.

If you start Humira, and feel as good as I do, then like myself and a lot of Humies, I think you will forget about all the "possibilities" and continue on to a much more stress free and productive life.

Relax. The warnings on Tylenol are just as extensive as on the Humira box.

One must be more diligent in regard to avoiding infections and people whom are sick.

My hands have never been so clean. Lots of anti-bacterial hand sanitizer Learn to avoid hand to mouth/eye contact.

Chill.

PS - Beth is right, and she was on of those great gals on this board that helped an old guy like me through my fears!!

 

[Momof2EW]

So... Did my second dose of the Humeria today.... I had a bit of a panic attack since it was the first time I did it at home... but my mom helped me get through it and everything turned out not near as bad as I make it to be. Hoping it keeps working, I cant really tell any major differences right now though, as in the last month.

 

[dreamintwilight]

Hi Scifimom!

I was also one of the terrified people before starting this drug. This was my first real super big deal medication and it happened within days of getting my official diagnosis. it was a bit much to all take in at once. I even had a bit of a breakdown the night before because I was so freaked out. Turns out to be a GREAT medication for me. Within several days I could already tell the difference.

I also have allergies and did not find it worsened my condition at all.

A month later after starting I did have to start taking the shots weekly as every other week was not enough to keep things under control. I was also put on a small dose of AZA in addition to the Humira. I, too, was worried about being on another medicine that lowers the immune system. I have just been super careful with staying away from people who are sneezing ad coughing and wash my hands often. Also, sanitizer while out in public and not touching my eyes or mouth as others have said. I haven't had a single cold since starting either drug. I recently got a flu shot (or the first time every in my life) to ward off any extra germies as well.

Take things day by day and vent if you need to. For me, it helps to have a sounding board (my husand) who can listen to all my fears and worries and help me see the brighter side of these fears. This board also helped alleviate a lot of my worries as well

Good luck! You will do great!

 

[rottengut91]

Scifimom,

I was TERRIFIED of Humira before I started.

Now, 5 months in, I feel great and have had no adverse reactions or symptoms.

I too have stenosis in the small bowel. I am asthmatic and have allergies.

If you start Humira, and feel as good as I do, then like myself and a lot of Humies, I think you will forget about all the "possibilities" and continue on to a much more stress free and productive life.

Relax. The warnings on Tylenol are just as extensive as on the Humira box.

One must be more diligent in regard to avoiding infections and people whom are sick.

My hands have never been so clean. Lots of anti-bacterial hand sanitizer Learn to avoid hand to mouth/eye contact.

Chill.

PS - Beth is right, and she was on of those great gals on this board that helped an old guy like me through my fears!!

I see you've experience the love fistula, did the Humira help heal that as well?

 

[Scifimom]

Just got my first 6 shots. First loading dose tomorrow at the hospital (just in case I get an allergic reaction)

Wish me luck, I will update on Monday cause I dont have Internet at home.

 

[beth]

Kewl! You'll do fine. I think the hospital visit is common more to teach you how to do the jabs and make sure you understand what you are doing, than the allergic reaction risk.

 

[beth]

I see you've experience the love fistula, did the Humira help heal that as well?

I've had a fistula as well, and although it was fixed with surgery - fibrin glue and an internal stitch much to the surgeons surprise, before I went on Humira. I haven't had any re-occurrence <crosses fingers toes, touches wood>.

My understanding is that it should because it slows and hopefully halts the inflammation process that caused the abscess/ulceration in the first place.

 

[Scifimom]

Kewl! You'll do fine. I think the hospital visit is common more to teach you how to do the jabs and make sure you understand what you are doing, than the allergic reaction risk.

I know how to give shots already and have been practicing in oranges. Plus I am not afraid of needles and have quite high pain tolerance (The doctor told me that when I took zero pain meds after surgery).

But its a common pratice here to have the first load at the hospital, just to be on the safe side.

Scifimom

 

[rottengut91]

I've had a fistula as well, and although it was fixed with surgery - fibrin glue and an internal stitch much to the surgeons surprise, before I went on Humira. I haven't had any re-occurrence <crosses fingers toes, touches wood>.

My understanding is that it should because it slows and hopefully halts the inflammation process that caused the abscess/ulceration in the first place.

I can't wait to have my fistula healed and gone. I currently have a seton and my fistula continues to drain, oh how gross. I'm waiting on Humira to arrive here at home, then make an appt. for tech to come to me or go in to clinic to begin. Do you recommend doing initial dose at home or in clinic? I have to travel a bit to clinic, but not too far. Home sounds good, but worried about my reaction. What do you think??

 

[beth]

Yup, had the draining seton. Not fun, at all, even tho I had mine for just 6months. I'd recommend what your consultant/specialist nurse recommends Having a tech/nurse come to your home sounds good, but if you are concerned about reactions to it I'd head into the clinic just for the peace of mind.

 

[Scifimom]

Aaaaand I am back. First four shots are already traveling inside me. The shots were piece of cake. I noticed that if I Inject at my belly it doesnt hurt but I feel it for a while. If I go for the leg It hurts more but the pain goes away as soon as I take the needle out. I think I will go on with the belly.

Obviously I am still alive, although I feel a headache/migrane coming.

 

[beth]

Yup, I get a little headache, and tiredness, after as well, seems common, so I do it just before bed time that way I sleep through any side effects.

 

[CyCrohn'sGuy]

Saw my GI yesterday who smiled broadley when I walked into his office and then laughed out loud. He told me I looked great, like a completely different person than the one who left his clinic 5 weeks ago. In that time, I have gained 5 kg. I am completely symptom free except for diarrhoea which my GI explained is not due to the Crohn's but to having a much shorter bowel following surgery and which in time will find its own rhythm. I am also continuing with Humira and will have my 3rd dose on Tuesday. The only side effect I have experienced with Humira as I mentioned before are headaches.

SciFiMom, don't worry, όλα θα πάνε μιά χάρα. Χαιρετίσματα απ την Κύπρο.

Κώστας/Costas

 

[beth]

Kewl!

 

[rottengut91]

Good to hear CCG...hope the relief continues!

 

[Poppysocks]

I'm about a little over a month in. At one point it seemed like it was getting better, stools were a bit more formed. But it's gotten pretty bad again. Still my BM's aren't anywhere near normal, no energy, not gaining weight. Don't know how much longer I can stay on this stuff and feel like crap.

 

[Lucy]

Poppysocks how oftern are you taking the injections? It wasn't working well for me so they increased it to a weekly injection. Much better on weekly inj's. for me.

 

[Poppysocks]

Poppysocks how oftern are you taking the injections? It wasn't working well for me so they increased it to a weekly injection. Much better on weekly inj's. for me.

40 mg every other week. I just had my first single injection last Thursday. Maybe I'll switch to every week when I tell my GI it's not working.

 

[Lucy]

The GI may make you wait a little longer, but it wouldn't hurt to ask. Good luck and I hope it starts working for you soon.:goodluck::getwell::hang:

 

[beth]

A month in and you wont be back to normal, but IME you should gradually be getting better. Sounds like talking to your GI would be a good plan. Do you get a little better after each injection before tailing off, or is it making no difference at all?

 

[Poppysocks]

I really can't honestly even tell. Stools still look terrible, energy is pretty bad, appetite is just ok, my stomach still grumbles a lot. I gained some of the weight back from my last flare up but I've stopped gaining. Just a general feeling of malaise. There was 1 point where I thought I was getting better but then I got sick again I don't get it. I did my last injection on Thursday and haven't noticed anything. I was hoping this would get me back to normal for a few years but it's just not lookin good, runnin out of options.

 

[rottengut91]

hey Poppy...sorry to hear Humira doesn't seem to be working for you. I'm getting ready to start, just waiting on shipment to arrive. I was hoping this was the one going to get me out of this flare I have been in for months now. Maybe weekly injections will help. Hope it starts kicking in soon. Hang in there. Keep us posted.

 

[beth]

Hey ho, Poppysocks. I know it doesn't work for some people for whatever reasons, but I don't know the percentage. Maybe you are in that 'awkward bugger' group for which nothing seems to work

Good luck with your GI.

 

[Poppysocks]

Maybe, that would be just my luck.

 

[Number41]

Hey Poppysocks, don't give up hope on Humira just yet. When I first started Humira I improved for about 5 weeks and gained 15 pounds, but the week after my first maintenance dose things started getting worse. The symptoms came back and I lost more weight, so after a few weeks of going downhill my GI put me on weekly Humira. Things slowly started to improve again, and I'm doing okay at the moment. Hopefully you'll start to improve on just bi-weekly with a little more time, but if not there's still the option of trying weekly doses.

My GI said that of his patients that take Humira about 1/3 have great results, 1/3 have moderate results, and 1/3 simply have no response. I'm hoping you're in one of the first 2 groups.

 

[MikeinBklyn]

Hi all,

The fistula closes and opens depending on the Humira cycle. It opens a day or two before my next injection and starts to reclose a few days after my injection.

My CR doc wants to "clean out" the fistula tract feeling that it will heal better after being scrapped out.

What a PITA.

I am 5 months in and feel great other than the fistula. Everything works just fine

Good Luck to all!

 

[dreamintwilight]

Poppysocks - I agree with others. I was on Humira for about a month feelign great and then I started getting the rumbles and mini flares. I eventually ended up back in the hospital for a few days because I had strictures still present and the Humira every other week wasn't enough to keep the inflammation under control. They approved me for weekly shots and started me on 75 mg. of Imuran on top of that. Haven't had any pain or problems since then.

Within the next month my doc is going to try switching me back to every other week! Hang in there! Weekly shots could help you tremendously. Don't give up hope yet

 

[MikeinBklyn]

Do any of you Humies keep track of your white blood cell counts?

When I started Humira I had a WBC of 4000.

5 months in my latest count is 6000.

My doc is very pleased with the blood test results.

I am pleased as the count falls into the normal range and with cold and flu season coming up I hope to be able to fend off the bad bugs.

 

[ThanksP]

Yes and yes, I was screened for TB, herpes, hepatitis, toxoplasmosis, Epstein Barr and cmv. All negative. .

Reading this just worried me. I'm not on Humira, but take the similar drug, Cimzia. Before my first injections, I had to be tested for TB. I never thought about Toxoplasmosis. I had it as a child (about 5 or 6) and it even caused scarring on the inside of my eye. But it went into remission and I have had no issues with it in over 30 years.

Has anyone else been tested for this before taking a biologic? Perhaps I should ask my doctor even though I've been on Cimzia since March with no ill effects...so far.

Eek! :eek2:

 

[dreamintwilight]

Mike - I probably should. My WBC counts have wavered back and forth though. Sometimes they're on the lower side other times they are normal. I think it depends on what day I go in to get my blood taken and how close it was to my injection day. But nothing has worried my GI, so maybe that's why I haven't been keeping track myself.

 

[crohnsdad]

Humira side affects

Hello everyone,

I am new to this site.

My daughter has been on Humira for a week now with some side affects not listed on the doctors lists, just wondering if anyone else has had anything similar.

My daughter is severly disabled and doesn't walk or talk so it is difficult to tell how she is feeling, but below is how we think she is feeling.

Severe aggitation, almost like she can't calm down and like she wants to crawl out of her own skin.

Anyone who has had similar side affects please let me know because it feels like the doctors don't believe us.

Thanks,
Bob

 

[Lucy]

Wow. Is it because it doesn't mix well with any other meds she is on? Maybe the injections have frightened her. Keep telling the doc until he/she listens to you. I would be in there daily if I had to. I hope the best for you and your daughter. Keep us posted.

 

[beth]

It's possible she is having an allergic reaction to it, I assume you've looked her over to check for physical signs - at least if there were you can say 'here doc, told you so...'. Or she has a latent infection that is awakening. She was screened for TB/Hepatitis/etc?

 

[Scifimom]

Reading this just worried me. I'm not on Humira, but take the similar drug, Cimzia. Before my first injections, I had to be tested for TB. I never thought about Toxoplasmosis. I had it as a child (about 5 or 6) and it even caused scarring on the inside of my eye. But it went into remission and I have had no issues with it in over 30 years.

Has anyone else been tested for this before taking a biologic? Perhaps I should ask my doctor even though I've been on Cimzia since March with no ill effects...so far.

Eek! :eek2:

The reason I was tested for toxoplasmosis is cause I was infected when I was 18 when I was bitten by a hamster. Thats why I started with humira also. My GI thinks I have more chances to develop an allergic reaction from Remicade. So yes talk to your doctor about it.

 

[Scifimom]

So, today is a week post my first shots and I feel... better, I guess. I have more energy to do things and I dont get tired THAT easily. But, my ankles are swollen at night, like REALLY swollen, they improve overnight but then they get swollen again during the day. (I spend most of my day at an office with my feet hanging from a chir but still... too swollen). I also have developed those white blisters on my lips (in Greece we call them afthes but I dont know the word in English) I have one on my lower lip right now and its HUGE and uncomfortable.

On the bright side, I still go to the bathroom 4-5 times a day, but the D episodes have been eliminated to one every two-three days. I think I will have to wait for a couple of weeks to see some real improvement

 

[rottengut91]

Hello everyone,

I am new to this site.

My daughter has been on Humira for a week now with some side affects not listed on the doctors lists, just wondering if anyone else has had anything similar.

My daughter is severly disabled and doesn't walk or talk so it is difficult to tell how she is feeling, but below is how we think she is feeling.

Severe aggitation, almost like she can't calm down and like she wants to crawl out of her own skin.

Anyone who has had similar side affects please let me know because it feels like the doctors don't believe us.

Thanks,
Bob

The bottom line here, you know your child better than anyone, even her dox. If you feel this medication is causing more harm than good, take her off it it. Don't be afraid of these dox. Let them know you are not comfortable with her reaction to this med. It appears she has more than enough to deal with day to day anyway.
That's my opinion.

 

[crohnsdad]

Thanks Julie,

We had already decided to take her off it and as for the doctor goes he is gone to, we are trying a different doctor in the practice.

Thanks again,

Bob

 

[Poppysocks]

I realize it takes the Humira a while to kick in. But I stopped after 5 weeks and went back to Remicade, and will be getting it every 4 weeks. I am also contemplating on using Imuran in conjunction with the Remicade, which I don't want to do but I may have to.

I just didn't feel like Humira was doing much, and it really wasn't doing nearly as much as Remicade was when I was on Remicade. I didn't want to be one of those people on Humira for 3-4 months and not really be having any relief.

I'm a very inpatient person so that probably didn't help. I just really want to put some weight on for winter break when my family gets together. I don't want to look like shit when I see them, and I hardly had an appetite the whole time while on Humira.

 

[Lucy]

:ghug::ghugoppysocks you hang in there. I hope you find the right meds to help you. Humira has helped me, but I know everyone is different. Don't let it get you down things will get better.

 

[NicoleKS]

:ghug::ghugoppysocks you hang in there. I hope you find the right meds to help you. Humira has helped me, but I know everyone is different. Don't let it get you down things will get better.

Noticed that you do your injections weekly. How/when/why did your doc decide that?? Do you do one pen a week or two a week? Just curious! I've been on it for over 6 weeks and my tummy still gurgles a lot and I am still having bouts of D and pain. =D

 

[Lucy]

Hi Nicole. I started my Humira 1 inj every other week. After a couple of months of it not helping the doc put me on weekly injections. Every other week is what the initial dose would be, but if needed it can be given weekly. After I started the once a week I was better. I have been on weekly inj's for a little over a year now. I still have some bad days, but I am better than when I was first dx. It's been worth it for me. No side effects, but methotrexate may be added at some point because of joint pain. Good Luck and I hope your Humaira helps you.

 

[Crohnsie]

I've been on humira for about a year and a half and have only jut recently got it working, I injected in the legs and it didn't work, I then got my girlfriend to inject me in the arms, a little improvement, and now I inject myself in the stomach which seems to be doing the job better than before

 

[NicoleKS]

I've been on humira for about a year and a half and have only jut recently got it working, I injected in the legs and it didn't work, I then got my girlfriend to inject me in the arms, a little improvement, and now I inject myself in the stomach which seems to be doing the job better than before

I did my loading doses and another dose after that in my legs. I've since moved to my stomach and I like it better there. It seems to be a little less painful. Lots of fat to grab onto. Lol.

 

[rottengut91]

I had my initial injections last Friday. I injected all four in my abdomen. I was really hoping to have noticed an improvement by now, but in reality, I feel worse. Today, the cramping is terrible. On top of that, I had poopy looking discharge from my vagina. I've been suspecting something brewing down there because of lots of pain and discomfort in the peritineal region. I thought maybe I was forming an abscess related to the perianal fistula, but now I suspect I may have formed a fistula into my vagina. This just keeps getting worse and worse. I saw my CR surgeon last Wednesday because of this. He did a thorough digital rectal and a rectal sonogram and said he couldn't find anything like an abscess or another fistula. He said it was most likely the current fistula causing the pain. It has been really painful down there for about a week now and a couple days last week I was running a low-grade fever and had night sweats, chills and body aches. I really felt something was going on. Now I don't know what to think. I'm afraid to call the doc. Last week he couldn't find anything, he's going to start thinking I'm looking for stuff to be wrong. Meanwhile, I feel gross. I've got poop coming at me from three different places now, what the hell?

 

[beth]

Humira wont stop an abscess in it's tracks that fast, it does take time. And it does sound like you have a recto-vaginal fistula. They are pretty difficult for docs to find these things - even with my standard perianal fistula it took two operations to find the internal opening. Perhaps talk to a gynecologist?

 

[Lucy]

Julie call the doc you cannot continue like this in pain. I didn't even know you could get a fistula in the vagina. I hope you get some relief soon. Let us know what the doc says if you decide to go.

 

[beth]

Yup you certainly can. It has been discussed on here before. either do a search or post a new thread looking for more info. It's just another manifestation of this utterly crap disease.

 

[MikeinBklyn]

Going in tomorrow for another fistulotomy. Not happy.

Humira just does not get full closure or there maybe a tiny pocket of ick that never fully goes away.

I'm not looking forward to the recovery, I mean pain.

 

[beth]

Good luck tomorrow Mike. Dont know if they do this over there but my surgeon always injected me with lots of local anesthetic which the first time lasted nearly two days.

 

[nomad]

Just read your message, Mike - sending my best wishes, by now you probably had your op. I've never had one of this kind, but most likely will at some point. Wishing you a speedy recovery!

 

[rottengut91]

Hey Mike...hope everything went well today.

 

[DougUte]

Mike. Good luck.

I just had 2 ft of small intestine, 6 in of colon removed, and a fistula removed. I get to officially join the Humira club on November 11th. I can hardly wait.

 

[ThanksP]

The reason I was tested for toxoplasmosis is cause I was infected when I was 18 when I was bitten by a hamster. Thats why I started with humira also. My GI thinks I have more chances to develop an allergic reaction from Remicade. So yes talk to your doctor about it.

I had the blood test last week after reading this topic. Got the call today that I have highly elevated antibody levels. I'm freaking out right about now. I was told I have to see an Infectious Disease doctor as soon as possible and might have to stop the Cimzia. I am SOOOOOOOOOOOOOOOOOO glad I read this topic. had it not been for this topic, I would have never asked my doc about it. Which makes me mad too, he should have asked a few questions before putting me on such a drug. Ugh, I'm in shock right now. But still, so thankful I read this thread.

 

[MikeinBklyn]

Hi all,

many thanks for the good wishes.

The surgery went fine.

Now the fun begins. The doc did a fistulectomy not a fistulotomy so there was more "meat" removed.

I had another seton put in as the doc did not want to cut any muscle.

The worst part is after a BM. Whew, talk about discomfort!

I'll be medicating myself with Percoets every few hours.

Good Luck to All......Mike

 

[beth]

Ouch! hope it settles soon.

 

[klowee]

Hello!

Just wanted to pop in and ask if I can join your club. I started Humira 10/27 and am really hoping for some relief. I am so sick of prednisone!! I was thankful that the injections went smoothly for me, I had little to no pain. I was a bit scared with all the stories in this thread about the pain.

I had to quit my job that I have been at for 14 years a couple of weeks ago. I was no longer to fulfill the job expectations. I don't have support from my doctor's to pursue disability until after we see what the Humira will do for me. I had a horrible reaction to the Imuran and almost died. It was terrifying, so I have been very leery about trying anything new, but really need to get off the steroids, so we will give this a try.

This thread has been such a wealth of information! :ybiggrin:

 

[DougUte]

Kloee. Welcome. You are more of a Humira club member than I am. I get my loading doses on November 11th.

 

[beth]

Welcome Klowee. Anyone is welcome to join in on this thread; it's just a place to keep info, experiences/etc with Humira in one place. Hope it works well for you, and for Doug - hope the loading doses go smoothly.

 

[Lucy]

Klowee new members are always welcome. I'm glad you have found this forum helpful. So much good information and great people here. I hope the Humira works for you. Hang in there and keep us posted.

 

[Scifimom]

I just got my second loadig dose last Saturday. So far so good. but I noticed a couple minor things

a) My head itches, at fist I thought I had lice (I dont).
b) First loading dose I get a huge blister thing on my lips, talk about olympic dimentions sore. Second loading dose I have a smaller one on the side of my lips, but first loading was just before I got my period and second loading just after so they may be hormone related.
c) I have more energy than I used to but when I am tired I am exhausted
d) I still have D although the 6-8 times a day have reduced to 3-5 times a day.
e) My ankles are swollen at the end of the day, but they used to get swollen pre-Humira also, thank you office job.

I am not sure if Humira is working though, my next GI appointment is tomorrow and then in another week. I am still having anxiety attacks and get stressed easily.

So still so far so good I really hope I will not need surgery soon (I am not even sure I will survive another surgery the last one almost killed me)

 

[beth]

Well, mention it all to your consultant tomorrow. I'm wondering if you get cold sores - ie have Herpes Simplex virus, which may previously be knocked back by your immune system.
Otherwise it does sound like the Humira is taking effect. It wont be an overnight miracle but hopefully over time it'll really get the crohn's under control.

 

[Scifimom]

Well, mention it all to your consultant tomorrow. I'm wondering if you get cold sores - ie have Herpes Simplex virus, which may previously be knocked back by your immune system.
Otherwise it does sound like the Humira is taking effect. It wont be an overnight miracle but hopefully over time it'll really get the crohn's under control.

My herpes tests all came back negative. Also herpes lookes like many small blisters on the lip this was just a big one. In Greece we call them afthes and the look like white spots and they usually get on the inside of the lip. But yes I will talk to my doc tomorrow.

I think the most impressive effect is the less D symptoms. After a year and a half I can plan some outings with friends again without having to check all the bathrooms within a 200m distance. I even took my daughter on a daily scouts trip yesterday and spend 8 hours camping WITHOUT visiting the bathroom even once woo to the hooo

 

[NicoleKS]

I usually do my injections on Wednesday in the early afternoon. Think it would be alright if I did them later tonight? I don't really feel like messing with it tomorrow and I could just get it over and done with tonight...

 

[beth]

You should be able to do your injections a day early/late without too much trouble.

 

[MADiMarc]

Claire,
I came in to this thread with the same complaint. Humira did not work for me. I tried it for a year and after the initial loading does it was just like shooting very expensive battery acid into my legs. I noticed that I have been have very difficult times with RA syptoms on a daily basis. I never really had them before the Humira. The normal aches and pains, yeah but nothing like this. I have days where I cannot get out of bed. And yeah, I know I know, I should NEVER take Aleave but sometimes it is the only thing that allows me to walk.

Anyone else?
Michele

 

[hopeful]

Hi Everyone,

Has anyone had elevated liver enzymes as result of Humira?

Anyone developed acne from it?

Thanks

Mark

 

[MikeinBklyn]

On my last blood test one of the liver tests showed a .1 higher than normal result. It was not noteworthy to my doc. I have to take a look as to which test it was.

 

[ChefShazzy]

Mark, I can't answer about the liver enzymes, I haven't kept track... however, no acne from the Humira, if anything, my skin is drier than usual in certain spots.

PS - Humira, you can suck an egg today. I don't feel like dealing with you right now. I'll catch you tomorrow...

 

[NicoleKS]

Hi Everyone,

Has anyone had elevated liver enzymes as result of Humira?

Anyone developed acne from it?

Thanks

Mark

I've had terrible acne as of late....in places I don't usually have it (back and chest.) I attributed it to the Pred but I am down to 5mg a day. Hmmm. I guess it could be the Humira??

 

[beth]

I get very dry skin, particularly on my face, so I just use a good moisturiser on it. As for acne/etc, I dont know. You should talk to your GP/consultant....

As for liver enzymes, I did read a while back that Humira can cause changes in the cholesterol levels. So it doesn't surprise me.

 

[katiesue1506]

I have elevated liver enzymes, but its not due to the Humira or Imuran that I'm on... I guess it can be a result of blocked bile ducts. It can also be related to poor bone density, but I had that test and my bones were fine. I'm supposed to be getting an MRI on my bile ducts but I haven't scheduled it yet.

 

[susanfrances]

Hi everyone. I'm new here- and so glad to find stories similar to mine! I was diagnosed in 2007. My mother has very severe disease, and my 9 year old daughter was diagnosed last week.
I tried Humira August and September this year.

NicoleKS.... my back and chest acne was terrible- my shoulders and arms also... and very itchy. My doctor said that it wasn't a "common reaction", but the longer I took Humira the worse it got. I had an allergic reaction and had to stop it, but it worked great!

I'm waiting for my insurance to approve Cimzia now. Since I had to come off the Humira I have a perianal fistula that has returned...grrrrrr.... I also have a UTI that won't go away.

Mike- hope you are doing well with the seton... ouch! I had one doc suggest an over the counter cream (Nupercainal) with my last seton. It was a life saver- may be worth asking about.....

 

[DougUte]

I get to start my Humira on Thursday. Is there anything I should be doing to prepare?

 

[dreamintwilight]

I would just read through the thread so you are familiar with the different experiences people have. That way you'll be prepared for various happenings. Just relax and you will do great! Good luck!

 

[MetalCyborg]

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.

 

[beth]

Lettuce and tomato is brave! Glad it's finally working, even if it is the highest dose level I've yet heard; specially interesting to me as I find I don't have much 'headroom' above my current dose of an injection a week.

 

[Momof2EW]

Hey everyone!
So question.... I did my injection yesterday like normal and my mom does them for me because I always jump when the epi-pen pops into my leg.... Im still new at this and get horrible aniexty from the shots... anyways my question is, my mom didnt hold it good enough and some of the humeria leaked out.... not alot but just a bit, do you all think this will hurt anything?
I tried to call my nurse at the GI doctor and she never returned my call. I am kinda worried but I know most of the medicine got into my leg for the most part... any help... thank you! Elise

 

[dreamintwilight]

Elise - I wouldn't worry too much about this. I had this happened a couple months in. I'm not sure if it was a misfired pen or I did something weird, but almost half my medicine ended up seeping out and the rest sat right underneath my skin kind of in a bubble.

I worried that I didn't get enough medicine, but my GI nurse assured me that I probably had injected enough to be alright and there was no need to inject another pen. The rest of the medicine eventually was absorbed by my body over night.

I would say just be mindful of what you eat until the next shot. The only "adverse" reaction to my weirdo injection was that I felt a little more gurgly than usual. So, stick to safe foods just in case.

 

[DougUte]

Well, I thought I would start Humira today. I have to wait for my insurance to pre authorize it. Hopefully will be done in a few days.

 

[Momof2EW]

Elise - I wouldn't worry too much about this. I had this happened a couple months in. I'm not sure if it was a misfired pen or I did something weird, but almost half my medicine ended up seeping out and the rest sat right underneath my skin kind of in a bubble.

I worried that I didn't get enough medicine, but my GI nurse assured me that I probably had injected enough to be alright and there was no need to inject another pen. The rest of the medicine eventually was absorbed by my body over night.

I would say just be mindful of what you eat until the next shot. The only "adverse" reaction to my weirdo injection was that I felt a little more gurgly than usual. So, stick to safe foods just in case.

Thanks so much for the reply! That makes me feel better now I will def watch what I eat until the next shot comes around.


Thanks again!

 

[Sarafina]

Newest Member

Hey all,

I will be starting on Humira before Christmas. I've been in remission for 6 months, but starting to flare up again...I'd say I've done pretty well!! I'm nipping it in the bud this time, not waiting to be at death's door before I act.

Infliximab caused most of my hair to fall out because of the psoriasis it gave me on my scalp...I am terrified it's going to do the same thing on Humira so I had to be bullied to consent.

Wish me luck

 

[jazmac]

I started Humira 2 weeks ago and due for 2 more shots on Thurs. I am 5 weeks post op resection and 9 strictures removed. I was wondering how long it takes to know if it is helping? I have noticed my mouth ulcers are a little smaller so far.

 

[Nica]

Hi,
can I join the club too?
I started Humira in July 2010.

 

[beth]

I knew it was doing something 4 days after the loading doses. It wasn't any miracle straight away, just I noticed I had a bit more energy and less D.

Anyone can join the club. It's just a placeholder for all things Humira.

 

[DougUte]

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.)