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02-12-2014, 11:40 AM   #31
Sparkle2012
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Thank you so much for sharing your story. It is good to hear some supportive feedback regarding Humira as I know there are many happy stories about it. Thanks again!
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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
02-12-2014, 11:42 AM   #32
Sparkle2012
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Just this morning, there was a spot on our local TV station that said Big Pharmaceutical company's were not longer going to give doctors "Kick-backs" for prescribing their drugs, after some kind of lawsuit. hmmmm.....
It's about time. It's AGAINST patient care in my book. They give you the meds whether they support or have strong knowledge about them or not -- for the kickbacks. Not a reputable practice in my opinion.
02-12-2014, 11:45 AM   #33
Sparkle2012
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I know they say Crohns patients have "skin" issues but I am unclear as to what they are. Here is what I have. I get "pea or smaller sized rough places" on my skin...sometimes they have a dark pink color....they annoy me and I scratch them off which makes things worse. I have 5 places on my legs right now that if left alone, they go away. But it's become a sort of ...habit with me. Anyone else have anything similar?
02-12-2014, 10:00 PM   #34
my little penguin
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Have you seen a dermo about your skin issues?
Tnf alpha blockers sometimes bring skin issues to the surface.
They typically don't create skin issues but if you are prone to them then they are more likely to happen while on a biologic at least according to our dermo.
Most dermo that have crohn's experience can help you with that .
Good luck
02-12-2014, 10:55 PM   #35
SupportiveMom
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My daughter he seemed to develop the same thing. Looks like I'm off to the GP to get a referral to a dermatologist! When we were in the hospital the doctors asked if she had psoriasis so I am thinking she is developing it. I have it so she may now also.

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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02-13-2014, 06:59 AM   #36
Sparkle2012
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I have a touch of something - maybe eczema made worse because I can't leave it alone. Not on biologics yet. My family is full of psoriasis and eczema and some other skin problems like vitiligo, dermatitis etc. The doctor froze one of them last time I was there and it went away, now I have more. guess another trip to the derm is in order. Just wondered if anyone else was experiencing these little spots.
02-13-2014, 11:55 PM   #37
DCCrohns
 
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I've been on Humira for a while (after developing an allergy to Remicade and not having luck with Cimzia), and I haven't noticed any major side effects (even with being on a weekly dose). The cancer risk is what concerns me most but a slight increase in risk is worth quality of life to me now.
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~~~~~~~~~~

Diagnosed with Multiple Fistulas: 2000
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg weekly)
Surgeries: Gall Bladder Removal (1997); Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)
02-14-2014, 07:45 AM   #38
Sparkle2012
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what is the increase percentage? Does anyone know?
02-14-2014, 07:56 AM   #39
SupportiveMom
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I found a thread in this forum that discussed it previously. http://www.crohnsforum.com/showthread.php?t=21362

02-14-2014, 08:56 AM   #40
tkd1
 
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hi everyone new to forum .i have been on humira before it was approved for crohns .i was part of the study group.i currently take double the dose one shot every week as opposed to every other week ( its a nightmare with insurance )..also on 50 mg 6 mp .i have had very good results .no issues .tried remacade before humira did not do anything for me .hope this helps
03-05-2014, 06:29 PM   #41
HiImSean
 
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I've been on Humira since July of 2008, I diagnosed in late 2007 with Crohn's. I did have resectioning done in summer of 2009 and remained on Humira and Pentasa since. I haven't had a flair-up since, knock on wood. I haven't noticed any reactions to the Humira as of yet. My doctors talks of the Humira as a long term solution for my Crohn's disease so I guess I'll keep chugging along with it.
07-31-2015, 12:36 AM   #42
Liquid Bacon
 
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I usually try to chime in on these threads, but must have missed this one. I've been on Humira longer than most Crohn's patients out there; almost 12 years now. I started in the clinical trials.

I can honestly say that outside of some skin issues with my scalp (which may or may not be from the drug), I have had ZERO side effects so far.

I inject once per week (I will second that the higher dose is a nightmare with insurance) and have been in full remission for over a decade! I still need to watch what I eat a bit, but nothing serious.
08-12-2015, 05:13 PM   #43
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I have a simple answer to the question about long term Humira use, and that is, I don't care. The reason I don't care is because without Humira my life was an unlivable hell. So as to the side effect that I may have in 10 to 20 years, at least I lived that long to see those days! For me there is no other solution. remission is too beautiful. I say this in spite of fighting an infection from a cat bite right now. The dr. gave me an antibiotic and told me to hold off on my next Humira dose, feeling better already.
Life can be good, or life can suck. Do the math.
Good Vibes to You All!
08-12-2015, 05:16 PM   #44
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what is the increase percentage? Does anyone know?
I asked my dr who has been a gastro specialist in the field for as long as I've been alive, He's never seen anyone develop cancer from Humira or remicade.
09-25-2015, 12:05 PM   #45
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I've been on Humira for 5.5 years now. It has been a miracle drug; however, the sinus issues (heavy post nasal drip) may cause me to come off of it.
09-11-2016, 12:37 PM   #46
Holistic
 
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Was on Humira for a little over a year. Did wonders for my Crohn's. Been off Humira for 6 months now. Still having different strains of reoccurring lung infections.
09-11-2016, 02:25 PM   #47
ronroush7
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I am supposed to get tested Wednesday to see if there is enough in my system. If not, I may have to start weekly instead of biweekly
09-13-2016, 02:39 AM   #48
Charlotte.
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I didn't go through all the comments (I'm afraid) but I haven't heard of anyone responding to Humira and just taking it short term to be honest. That also wouldn't make any sense to me if you finally find something that works and keeps you in remission but then you need to stop. Only reason could be your health system/insurance but apart from that I don't see any reason if the disease would get active again after stopping.
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.
09-13-2016, 01:00 PM   #49
aypues
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I am supposed to get tested Wednesday to see if there is enough in my system. If not, I may have to start weekly instead of biweekly
the old level used to be good if above 5. Now it needs to be like 8-10+, with no antibodies. My insurance didn't want to pay for double the dose, so I just switched to Remicade since the normal dose Humira wasn't doing anything.
05-15-2017, 03:41 AM   #50
emma_b
 
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Location: Sydney, New South Wales, Australia
I was on humira for 3.5 years and put my Crohn's in complete remission. I got sore throats quite frequently, but nothing more serious than that. However, in January I started having widespread joint pain and extreme nausea. My doctor can only put it down to the humira. I developed an infliximab lupus response 6 months after starting the infusions, so not that suprised that my body might have started to reject humira too. I'm now 2.5 months off the humira and still feeling crappy, but Crohn's is still in remission...
05-15-2017, 05:03 AM   #51
ronroush7
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Maybe you should see a rheumatologist.

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