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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira Club Support Group


 
05-11-2013, 11:47 AM   #1501
JustAYoungLad
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Hello! New to this group!

I had a bad year last year. I had tried lots of different medication to help a flare I was going through but nothing worked that well. I had to be admitted to hospital for about a week were I had an iron infusion and far too many tests.

I was put on Humira and it's been amazing. Been on it over 6 months now and I'm doing much better. I would definitely recommend it.
05-11-2013, 11:49 AM   #1502
Scaryman
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Hello! New to this group!

I had a bad year last year. I had tried lots of different medication to help a flare I was going through but nothing worked that well. I had to be admitted to hospital for about a week were I had an iron infusion and far too many tests.

I was put on Humira and it's been amazing. Been on it over 6 months now and I'm doing much better. I would definitely recommend it.
I am glad to hear that its working out for you.
__________________
Diagnosed 2003
5-ASA- failed
Imuran-failed with a strange reaction-paralysis
Remicade- failed with infusion reaction.
Mesalamine-another failure
Entecourt - fail- no help.
currently on Methotrexate 25mg and Humira combo.
Folic Acid Supplement
Hyclosomine,Ultram,vicoden for pain as needed
Extended right Hemocolectomy 5/24/13 Univ.Of Chicago
11/7/13- small crohns ulcer at surgical site (active).
05-12-2013, 06:45 PM   #1503
Ssmith
 
Join Date: May 2013
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Hello...I'm new...Let me start by saying...I'm not a Chronie...My husband is the one with Crohn's. I'm his mouthpiece, as he don't do chat rooms, etc. He has been diagnoised with Crohn's for the last 26 years. He's done fairy well with diet, medications, and frequent check ups.
The last year he has started having flare ups, and most days just don't feel well. His last Colonscopy in the Fall, his dr. told him his Crohn's had spread, and he had lots of inflamation. They started all the test to get him ready to go on Humira. Months forward...he finally got to start his first dose this past Friday. (The 4 injections.)

He's diebetic..immediately the injections shot his sugar up to close to 400..Friday was a pretty crappy day for him..he felt drained, and just washed out..You feel this way also when your sugar is way out of whack. He pretty much just laid around.

Saturday was some better, but still didn't have any energy, his sugar reading was done some, but still not back to normal.

Today, Sunday he said he felt better..actualy felt back to normal.
Is it going to be this way every time? Next dose of course is only two injections. He's really glad his dose day is Friday if it's going to wipe him out.
I'm sure I'll be back to ask more questions. Sometimes it just helps to talk to someone who is going thru the same.
Thanks!
05-12-2013, 06:51 PM   #1504
amrycrohns
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He's diebetic..immediately the injections shot his sugar up to close to 400..Friday was a pretty crappy day for him..he felt drained, and just washed out..You feel this way also when your sugar is way out of whack. He pretty much just laid around.

Saturday was some better, but still didn't have any energy, his sugar reading was done some, but still not back to normal.

Today, Sunday he said he felt better..actualy felt back to normal.
Is it going to be this way every time? Next dose of course is only two injections. He's really glad his dose day is Friday if it's going to wipe him out.
I'm sure I'll be back to ask more questions. Sometimes it just helps to talk to someone who is going thru the same.
Thanks!
I do not think anyone could tell you to be honest. Some people see side effects dimish with time, while others have to move to a different medicine. We all vary so much with crohns and medicine. I do not know if 400 is a dangerous score to have, but defaintly may want to mention it to the doctor and see what he has to say.

I do have some fatigue with humira not enough for me to give up on medicine.
05-13-2013, 02:43 AM   #1505
Aura
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Hi I'm a diabetic, but type 2. I'm on 850 mg x 3 a day of metformin. I've been on humira for a year now. My blood sugars are great now, I just get major fatigue and photophobia the day after jab. I also do my Jab on Fridays
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Aura
DX 1998
Meds: 2.5mg Plendil ER. Azathioprine 100mg; Inhibace+ 12.5mg; gastrosoothe 60mg; Simvastatin 40mg; Loratadine 20mg; Fluoxetine 40mg; Provera 10mg; Metformin 2.55g; Cal d forte; 1.25mg, Humira; Panadol 4g; Pred 3mg
05-16-2013, 08:38 AM   #1506
Gra
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Hello...I'm new...Let me start by saying...I'm not a Chronie...My husband is the one with Crohn's. They started all the test to get him ready to go on Humira. Months forward...he finally got to start his first dose this past Friday. (The 4 injections.)

He's diebetic..immediately the injections shot his sugar up to close to 400..Friday was a pretty crappy day for him..he felt drained, and just washed out..You feel this way also when your sugar is way out of whack. He pretty much just laid around.

Saturday was some better, but still didn't have any energy, his sugar reading was done some, but still not back to normal.

Today, Sunday he said he felt better..actualy felt back to normal.
Thanks!
Tiredness for one or two days after injection is very common side effect of Humira.
__________________
ABOUT: male, 66 yo, DX CD Terminal Ileum, 1-May-2012
MEDS-PREVIOUS: Prednisone: 6 months, stopped 19 Dec 2012. Imuran: bad reaction.
Humira: 5th Oct 2012 till July 2013. Worked well for me.
SURGERY: 6 Aug 2013: Ileostomy, Temporary stoma.
29 Oct 2013: takedown.
23 Jan 2015: in remission - my goal is to stay there.

"What doesn't kill us, makes us stronger!"
05-17-2013, 11:15 PM   #1507
viclynn
 
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Hi All,
I was given the option by my GI to either take Humira or Remicade and of course all of the warnings for the both scare the crud out of me. Im leaning toward Humira for the following reason...
I have had CD for over 4 years now and i'm 25 now. The thing is I just developed ibd associated arthritis in my knees. The pain is awful and it has gone away for about a day in the last week but then just came right back.
Does anyone have any experience with the arthritis who has also taken Humira?
I am just so sad to think that at 25 I wont be able to fully extend my leg for the rest of my life. I dont know if im being over dramatic with this.
I remember when I got my first fistula removed i was the same way thinking the tissue would never heal, but it did.
Is it possible that the knee pain can go away.
Im currently in the middle of flair up so im hoping when its gone the arthritis will follow suit just like when it showed up.
I was also proscribed Neurontin while i was in the hospital this past week and now that i got the fill im not really sure what its for? im assuming the knee pain??
Please help!
05-18-2013, 12:46 AM   #1508
elvie
 
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Hi viclynn,
I had arthritis and tendonitis in both feet last year prior to starting Humira in January this year. Ever since going on the Humira I haven't had any joint pain at all which has been absolutely wonderful. I could have gone on Remicade instead but chose Humira after my rheumatologist thought it would be better for my arthritis. Yes there are side effects and while it's important to be aware of them it's also important not to freak out about them and let them stop you from trying to fix your extreme pain. I can definitely recommend Humira.
05-18-2013, 08:36 AM   #1509
amrycrohns
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Hi All,
I was given the option by my GI to either take Humira or Remicade and of course all of the warnings for the both scare the crud out of me.
I!
I take Humira and find it helps with both conditions, so I would recomend it. At least to try first because it is much more convienent if nothing else. You can take it at home, you don't need to sit at hopsital for 3 hours getting a infusion. With all the TNF blockers one just may not work for you while another is a miracle drug.

Start with humira and if it works awesome, if it doesn't don't get discouraged and try remicade. I have used Cimzia, Remicade and Humira before finally sticking with Humira. Also remember while some people see almost immediate results sometimes these medications can take alittle while before they kick in full go.
05-19-2013, 02:05 AM   #1510
viclynn
 
Join Date: May 2013
Location: Los Angeles, California

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Hi Elvie,

Thank you for your response!
It really is nice to know that there are other people out there who can share their experiences with me!
I will be starting Humira on the 28th so I really am looking forward to it!
I am a student and am now just very insecure about walking around in public, but that is a different story.

amrycrohns ,

Thanks for your message. Being discouraged was never the type of person I was until one thing turned into another with the CD, but I will try my best to stay positive!

Ill come back and tell you how it all goes! Thanks!
05-20-2013, 12:51 PM   #1511
Pins n Needles
 
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Location: Calgary

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Hi-
Just joined the forum and the Humira Support Group.
I was diagnosed with Crohn's in 1994 and have had 2 bowel resections. Have run the gamut of medications and am now on Humira, which my Dr says is my last ditch effort drug - if this doesn't work, I have no other meds to try and will be winging it on my own. I believe I am having some bad side effects and wanted to know if anyone else here is familiar with any of the things I have going on.
I have been on Humira for almost a year (it's a holiday today so my pharmacy isn't open to give me the exact date)
I give myself injections every 2 weeks with the epi pen, rotating between my stomach and thighs for injection areas.
I get big welts at the injection site that show up the day after my injections and last for at least a week; my Dr told me to use Benadryl and to not worry about it if it's tolerable.
About a month ago, I woke up with a big itchy swelling on the bottom of my left foot, which I thought was a spider bite and really didn't think too much about it until my whole foot was inflamed and it hurt to walk (I wrapped my foot up with Manuka Honey and it went away eventually). Then, out of the blue, my right knee started to hurt so bad I couldn't even walk, but stopped hurting the same way it came on, the next day. My knee was pain-free for about a day then started hurting again, mostly at night. I am unable to sleep because at night everything (all my joints) hurts and I can't get comfortable.
I need to back track a little here, sorry....
I went to the Dr for the umpteenth time about my shoulder pain numbness in my arms a few weeks ago (which has been an ongoing since my early teens but getting increasingly worse), and he finally sent me for an ultra sound and xrays, the results of which are: I have a torn rotator cuff on my right arm, arthritis in my neck and also bone spurs in my neck that are closing down the holes the nerves travel through and are causing my arms to go numb. My right elbow has started aching constantly as well. I have an MRI for my neck in January.
So, to continue. 2 days ago, my right wrist started hurting and swelled up, I couldn't even move it without extreme pain, wrapped it in an ace bandage and it seemed to be better the next day, except, then my left wrist started hurting last night and now the red itchy swelling is back on the bottom of my left foot, but in a different spot, red, hot, hurts to walk on it.
I am not sleeping at night. Did I say that already? It's become quite stressful. I can't get comfortable and if I lie in the same place for even a few minutes, my arms go numb, my knee and shoulders and now my wrists, start aching so badly I can't stand it. The Dr prescribed Percoset, which does nothing for the pain but puts my head in a fog. Ibuprofen helps a bit, but is harsh on my liver in conjunction with all the meds I've been through.
I've looked up the side effects of Humira and I am pretty certain that I am experiencing some of them: joint pain, coughing, lupus-like symptoms(the wrist problem I'm having now). There are other symptoms going on, but I had a hysterectomy about 5 yrs ago and I'm not sure where those symptoms end and these new ones begin.
I will be calling my gastroenterologist tomorrow.
Thank you
05-20-2013, 01:24 PM   #1512
Traumanurse
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I am so sorry Pins and Needles. It is friggin hard to figure out what is a side-effect of meds, what are symptoms of the disease, or something else entirely.

You hang in there and see your GI and I hope that helps to figure things out. From what I read on here, we all go through this same questioning. I know I do. Had lots of joint pain throughout my disease process, so I know it's Crohns related and not meds, but you're in a difficult spot.

I wish you all the best as you go forward in the search!
05-21-2013, 11:29 PM   #1513
DougUte
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Welcome Pins and Needles. Glad you found us.

My doctor told me the joint pain from Crohns would effect numerous joints all over the body at the same time. What you described reminded me of that. Could be the disease, also could be the med.

I hope others can give you advice. I have not had the side effects you mention.
__________________
Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
05-24-2013, 03:17 AM   #1514
samandwes
 
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Hi! My boyfriend (24yr old male) is starting Humira on Monday for the first time but I was just reading the pamphlet in the box and noticed the quite long and scary list of side effects- most worryingly the nausea, vomiting, insomnia and depression etc.
So i was just wondering if anyone had experienced any of the really bad side effects/ how common these effects are.

Thanks!
05-24-2013, 08:46 PM   #1515
DougUte
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Hi Samandadews.

Those side effects are not common at all. They are listed because they can happen, but I have not seen much in the way of those happening.

I think it is much more likely to get an injection site reaction, like a rash, than it is these other things.

Last edited by DougUte; 05-25-2013 at 01:07 AM.
05-24-2013, 10:02 PM   #1516
Aura
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I don't get any of those , just tired, sting as fluid goes in, and I become sensitive to light
05-26-2013, 01:23 PM   #1517
IAmTheWalrus
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18 months on Humira and no side effects, 3 and a half years on varying doses of Imuran also. Never had any problems, well, I do find it harder to clear up my seb dermatitis, the better weather benefits that though.
__________________
28 y/o male from Dublin, Ireland, Dx with Crohn's Colitis in January 09.

Current Meds: Remicade, Imuran.

Risk/Benefits of treating Crohn's. Link below

http://www.ccfa.org/assets/pdfs/risk...transcript.pdf
05-26-2013, 02:20 PM   #1518
gmarks
 
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hello! I am waiting to hear back form the pharmacy, and will be starting Humira as soon as they get back to me. I'm a bit scared about giving myself the shoot- but I'm excited for the change (Ive been on 6MP for about 10 years and its just not working anymore so I'm ready to start feeling better!) any and all advice is welcome!!
__________________
DX 2002
6mp and Entocort until June 2013
Humira starting June 2013

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!
05-26-2013, 03:02 PM   #1519
jonique
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hello! I am waiting to hear back form the pharmacy, and will be starting Humira as soon as they get back to me. I'm a bit scared about giving myself the shoot- but I'm excited for the change (Ive been on 6MP for about 10 years and its just not working anymore so I'm ready to start feeling better!) any and all advice is welcome!!
Welcome to the Club gmarks! I have been taking Humira for 3.5 months now and it seems to be working well. i take it with Methotrexate and any side effects that I do get are from the Metho.

It is a bit scary to think of injecting yourself but it's not so bad. I use the Humira pen and inject in my stomach. About 30 minutes before I inject, I take the Humira out of the fridge and also take super duper strength Tylenol. I also make sure that I have taken an antihistamine as i get red itch rash at the injection site and the antihistamine helps for the most part. It is important to make sure that you squeeze the fat layer and press hard against it with the pen so that you don't get any kick back. I hold my breath, squeeze my eyes shut and count to 10 and then when I pull the pen away I press a cotton pad on it and put a little pressure to soothe it. Not too much pressure though. (you will not need to pull the needle out of you as the needle recedes inside the pen so you just move it away from your stomach)

The first four shots were done by the IBD nurse and they actually hurt more than when I do them myself.

Good luck and keeps us posted!!
05-26-2013, 06:06 PM   #1520
DougUte
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hello! I am waiting to hear back form the pharmacy, and will be starting Humira as soon as they get back to me. I'm a bit scared about giving myself the shoot- but I'm excited for the change (Ive been on 6MP for about 10 years and its just not working anymore so I'm ready to start feeling better!) any and all advice is welcome!!
Welcome to the club. I hope things go well for you.
05-26-2013, 06:28 PM   #1521
gmarks
 
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is the rash effect common?
05-26-2013, 08:12 PM   #1522
jonique
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is the rash effect common?
A injection site reaction is very common.
05-27-2013, 03:10 AM   #1523
Aura
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I don't often get reaction at site. I also say the alphabet as I inject, generally starting swearing around "e, f, g" then I just finish the song and take the pen away
05-27-2013, 12:41 PM   #1524
DougUte
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I do have a reaction at the site often. It will cause a small lump at the site.It takes a few minutes but the lump goes away. It does not stay around.
05-27-2013, 02:08 PM   #1525
MrsC
 
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Anyone ever not had luck with Humira and ended up with surgery am looking for info if doc started you back on it after surgery. My Doc is saying wipe the slate clean with surgery and start fresh. He also mentioned something about starting back on Humira after surgery.
05-27-2013, 05:57 PM   #1526
Traumanurse
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9 days on Humira and no side effects so far. I THINK I'm seeing a slight difference in symptoms. Keeping my fingers crossed!
05-27-2013, 08:48 PM   #1527
tots
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I will say I was not happy when they sent the prefilled
Syringes instead of the pens cor my refill. I will say, the syringe is
less painful.

Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
05-28-2013, 08:49 PM   #1528
gmarks
 
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thanks for the advice!!
05-29-2013, 04:00 PM   #1529
Vonnie
 
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I took loading doses May 18. I have not seen any positive changes yet but I know it's still early. I did not have any injection site reactions and the shots hurt less in the stomach and more in the thighs (in my opinion). I am currently coming off of prednisone and the big D is back with a vengeance. I am sooo hoping that this symptom of crohns will be helped with humira. I was really anxious before getting the first dose but once I gave myself the first one, it was a relief. I had a nurse come to my home and she walked me through it.
05-29-2013, 04:04 PM   #1530
Aura
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It can take a few weeks or couple of months before you notice a big difference. It was a couple of months for me, that was just a year ago now
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