Long Term Humira = non-functioning immune system? Advice please!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Mike686
Regular Member


Date Joined Jun 2006
Total Posts : 39
   Posted 4/21/2010 5:08 PM (GMT -7)   
I do realise this is a very long post to read, so all of your input is greatly appreciated.

I've been on Humira since February 2007, so that would be a little over three years. The first couple years were generally awesome: 90% free of Crohn's symptoms and no noticeable side effects from the Humira except for the occaisonal fatigue and nausea. In the past year, however, things have been very different. I've been getting sick and STAYING sick for much longer. Just this past November (2009), I contracted a nasty upper respiratory infection, accompanied by fever, nasal congestion, fatigue, chills, soreness, and everything else that a virus would cause. While the fever has long since disappeared, the infection symptoms have remained.

Here's the huge problem: I've literally been sick ever since then, with the same symptoms (except for the fever). I've contacted my gastroenterologist numerous times, and every time his exact words are, "I really don't think it's the Humira causing this, you shouldn't stop it". As I kept being persistent with him, he referred me to an infectious disease doctor, whom after numerous visits came to the conclusion that I should stop the Humira. When checking back with my gastroenterologist to confirm stopping the Humira, he still insists that I stay on it!

The only medicines I'm taking are Humira and Pentasa. Numerous blood counts in the past 6 months have all had the same results: low WBC, low platelets, & low testosterone (It's 218 and I'm 23 years old). I'm really sick of feeling sick all the time. Literally every morning I wake up with a sore throat, fuzzy head, cotton mouth, fast heartbeat, and just general horrible feeling. It fades in and out throughout the day, but there's definitely something wrong. I've had to drop my spring 2010 college semester because of this, and my work and social life is horribly suffering. My girlfriend always thinks I'm lying to her about being sick.

As of now I'm in between Humira injections. Can anyone suggest some steps I can take to figure out what is wrong with me (ie. find a different doctor, go against doctors orders and stop Humira, just give up on life, etc.)

Thanks!
Diagnosed with Crohn's disease February 2007, currently on Humira bi-weekly and Pentasa 1000mg 2x daily

Post Edited (Mike686) : 4/21/2010 6:14:32 PM (GMT-6)


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/21/2010 5:16 PM (GMT -7)   
If YOU feel uncomfortable keeping with the Humira, then you should stop. Simple as that. There are other choices out there for you. If you like your doctor, stick with him, but firmly tell him that you don't want to take it anymore. I had to do that with my last gastro (also with Humira, but for different reasons), and he was so upset I ended up having to change doctors.

It's your choice of what you put in your body- and not every doctor is always right.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 4/21/2010 6:19 PM (GMT -7)   
I am so sorry to hear. Get a few other opinions. Maybe Remicaide might be better for you.

Where do you have the disease?
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed

CD/UC story: I took Cipro. Then, I had diarrhea. It felt like my whole colon was burned. It eventually got extremely painful to even have a bowel movement when only one drop of blood was passed. I was diagnosed with c diff. Took Vancomycin and the blood stopped. Diarrhea persisted. Colonoscopy was done and CD/UC was found. Cipro, I hate you and the doctor who put me on it for an "ear infection."


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 4/21/2010 6:21 PM (GMT -7)   
Mike686 said...

The only medicines I'm taking are Humira and Pentasa. Numerous blood counts in the past 6 months have all had the same results: low WBC, low platelets, & low testosterone (It's 218 and I'm 23 years old). I'm really sick of feeling sick all the time. Literally every morning I wake up with a sore throat, fuzzy head, cotton mouth, fast heartbeat, and just general horrible feeling. It fades in and out throughout the day, but there's definitely something wrong. I've had to drop my spring 2010 college semester because of this, and my work and social life is horribly suffering. My girlfriend always thinks I'm lying to her about being sick.


Hi Mike...I'm so sorry you are having such a rough time.

I usually limit my responses to questions about diet and natural supplements, but something about your post made me want to jump in. It sounds a tad bit like a member of our forum, CrazyHarry's experience; especially the part about your blood count. You might want to seek him out to see what his thoughts are about your situation. Just a thought!

Aside from that, I wholeheartedly agree with what imissicecream said.
Mom to 17 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium, vit. D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Incorporate Specific Carbohydrate Diet (SCD) recipes, too. Med-free.

Threads discussing diet:
http://www.healingwell.com/community/default.aspx?f=17&m=984588
http://www.healingwell.com/community/default.aspx?f=17&m=1533705
http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1262312


Mike686
Regular Member


Date Joined Jun 2006
Total Posts : 39
   Posted 4/21/2010 6:43 PM (GMT -7)   
imissicecream - You're absolutely right that I should follow through with my gut instinct (lol, gut) and stop taking the Humira. The only thing stopping me is my fear of the unknown. When will the disease return and how severe? When I first got diagnosed it was pretty bad, lets just say it involved lots and lots of blood.

NostraHistoria - The disease is mainly in my terminal ileum. I am open to opinions from other doctors, but how would I go about finding a few top notch doctors? At this point I will even pay cash if my insurance does not support the doctor visit. I'm in the Los Angeles area: should I look into possibly one of the universities like UCLA's medical department?

EMom - I will do some reading on CrazyHarry and his posts, thanks for the input!
Diagnosed with Crohn's disease February 2007, currently on Humira bi-weekly and Pentasa 1000mg 2x daily


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/21/2010 8:27 PM (GMT -7)   
If you decide to go off, you will have to be prepared for a change of symptoms, maybe the CD will stay calm (keep that thought firmly in your mind). Either way, you might want to give your body a chance to heal from the respiratory issues.

I would suggest you find a doc who is aware of Low Dose Naltrexone as a therapy for IBD. I am no expert, but you can google. It is not an immune suppressant nor can it be mixed with anything other than under 10mg/day of prednisone. Non of the immuno suppressants or Remicade helped me, or the side effects were too much, either way.. sigh...

I have just begun it, may or may not be up to my full dose but it is helping, slowly -- don't help that I have a colo-cutaneous fistula with food debris in it that is causing a narsty little abscess...

Just my two cents...

Always Go With The Gut!

Best,
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/21/2010 8:32 PM (GMT -7)   
They give chemo patients an injection to help boost their white cell count and help protect them against infections. I don't know if this would be an option for us, or whether it would make the Crohn's more active, but it might be worth asking about.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Mike686
Regular Member


Date Joined Jun 2006
Total Posts : 39
   Posted 4/21/2010 11:44 PM (GMT -7)   
MToronto2 - I've looked into the whole LDN thing but have been "afraid" to mention it to my doctor. Seems like he always tells me what he wants to hear. Sigh...What type of side effects did you have on Remicade?

ivy6 - I'll have to ask about that. When I've asked about the low white blood cell count in the past, the doctors response has always been "These numbers are normal for someone on your type of medicine". What doesn't make sense is: aren't white cells supposed to be elevated in the presence of an infection? I have an infection and mine are still low, that is what scares me.
Diagnosed with Crohn's disease February 2007, currently on Humira bi-weekly and Pentasa 1000mg 2x daily


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/22/2010 11:48 PM (GMT -7)   
I'm still looking into LDN and ULDN aka ULD-NTX (ultra low dose), but right now I'm not sure I can be experimenting to that degree -- nor am I sure if my Medicare Part D plan will cover compounding the microgram-range doses required for ULDN or even the single-milligram doses required for LDN. I'm concerned that the "easy method".....dissolving the standard 50mg naltrexone tablets in a large bottle of water to divide the doses.....won't be exact enough, particularly for ULDN.

There's a long story attached, related to the ups and downs of the past several years of my pain management....I'm both fascinated and worried about naltrexone's ability to "boost" my immune system. That may actually work well for some auto-immune conditions (paradoxically, on the surface of it); but Reactive Arthritis/Reactive Constellation (aka Reiter Syndrome) is a bit unique among auto-immune diseases. Anything that activates my immune system, even a little, causes a huge flare-up, and there are a lot of other differences from most of the conditions that LDN has been shown to improve.

ULDN is more tested in parallel with "traditional" opiate pain medications, and I may end up going that route. Perhaps even in combination with Levorphanol. But we'll see....I'm trying not to get my hopes up. I already ask a tremendous amount from my primary doc as it is, and all this stuff is fairly far out on the fringes.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 4/23/2010 8:49 PM (GMT -7)   
My opinion, and my opinion only:

If you get a GI that isn't listening to you, or seems stuck on only one treatment, it may be time to get a second opinion.
Humira, Remicade, etc are all immuno-suppresors. Your immune system is probably beat down so low, you can't fight off whatever you have.

I agree with your concerns though, I'm facing having to come off Remicade after a really nice 8 year run. I just got out of a one month hospital stay after coming down with a case of Guillian-Barre Syndrome. GI and Neurologist seem to think that the Remicade may have been to blame, but no one is sure...

Hang in there.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 4/24/2010 11:02 AM (GMT -7)   
Why not adjust the dose?

With the help of your g.i. doctor, you could go from twice a month, to maybe once every 3 weeks.
No luck, still the same? Maybe try Humira injections once per month?

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 4/24/2010 7:27 PM (GMT -7)   
Quality of life is worth something to. If I were you I would stop the Humira and in a few months or so, (when your feeling bettter) maybe you could try remicade or cimzia. Your doctor isn't the one waking up everyday feeling poorly.

All the best,
Julia

CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/24/2010 9:39 PM (GMT -7)   
biologics are very powerful meds. their long term use is unknown. we are the guinea pigs for them. it sucks.

if your disease is in check, that is good. perhaps the humira is working. however it sounds like it MAY be causing some other problems and you are not getting the answers/results you want. i can understand the frustration.

my advice, find a naturopath and hit the diet hard core. do the makers diet or scd. i am a strong believer in this stuff for what it did for me. but the key is to do it a "T" as best you can. no cheating. and you have to do it for a few months to say for certain it worked/didnt work for you and just how it worked, if it did. and a naturopath will look at other aspects of your health and treat you without using gnarly meds with gnarlier side effects. for example, remicade can cause lupus. ouch! look at what prednisone does. you need your blood monitored if on 6-mp. that is all ridiculous. now a naturopath is expensive, but it may be worth it in your case as you are not getting the results from traditional, western meds. i am not too familiar with humira (one med i have yet to try) and nor am i a doctor, but imhpo i would suspect the humira of the abnormal blood work. imhpo, under the watchful eye of a naturopath, this could be correctable rather quickly. you may need a new gastro too. that is hard to do, but it is business of YOUR health. take control. if he is not helping you as you think he should be, get a new doc. i know it is hard, but your health demands you make the hard choices.

if you live in southern california i can hook you up with my "team" i have put together over the last 3-4 years.

people who have not had a major health illness do not understand, that is why your g/f thinks you are faking. one truth i have found universal is that it is only a matter of time before we all get something (cancer, crohns, RA, heart problems, etc etc). you know what yours is and have it now. she'll get hers later. then she'll understand. we have a disease you cannot see. you look healthy. but all health truly begins with the gut. if you have a tummy ache, it spreads to the rest of your body and affects your mental health and a cycle begins. keep the gut healthy.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/25/2010 6:13 AM (GMT -7)   
I stopped taking humira and remicade because I could not get out of bed on them due to the lupus syndrome. So I am wondering if you have had your ANA tested?
 
All I can speak to is my own experience in what has worked for me and that was Methotrexate.  While it might make you a bit tired (and it can take months to work), it is something that works for me and unlike LDN you can still take narcs on it, if you need them.
I am also a heavy bleed and while I did get some more safe foods from the diet, all it did was make me worse.

I would suggest that if your doctor is not doing more testing on you and not listening to you, then I would think about changing doctors. Granted you may never get back to what you were before you got sick, but something has obviously changed and things do not sound good.  I would wonder if a pill camera might helpful in seeing if there is something going on.  So I would start with ANA tests, check your vitamen and mineral levels, and also your liver/kidney functions...etc


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 4/25/2010 7:20:52 AM (GMT-6)


asc58
Regular Member


Date Joined Jun 2006
Total Posts : 83
   Posted 4/27/2010 11:24 AM (GMT -7)   
I agree with MMMNavy, there are more drugs out there to try. I also had to stop remicade after 3 yrs of success and then tried Humira when it brought an unknown C Diff infection to the point of almost death and 2 PE's. My doc wanted to restart the Humira after everything smoothed over but I refused. He put me on Methotrexate injections and folic acid. Working great! Good luck with your decision, but your right, you should follow your gut instinct. If your dr is not willing to work with you, find another.


Crohn's in the ileum for the last 35 yrs.  3 ressections, numerous attempts at fistulae repairs, a battle with C Diff (that was bad), while recouping from C Diff, I had two PE's. Doing good now.
RX: Methotrexate, Zoloft.
 
 


nancerini
Regular Member


Date Joined Mar 2003
Total Posts : 100
   Posted 4/28/2010 10:31 AM (GMT -7)   
I'm sorry you have to go through this, look up on the web: Low-dose naltrexone for Crohn's

nancy

Mike686
Regular Member


Date Joined Jun 2006
Total Posts : 39
   Posted 4/29/2010 10:45 AM (GMT -7)   
nancerini - I have been doing lots of research on LDN, so that will definitely be kept in mind.

asc58 - Wow, that sounds horrible. So there ARE other people besides me getting crazy infections with Humira. As of now I'm working on finding another gastro doctor for a second opinion.

MMMNAVY - Thanks for mentioning those tests that I should be aware of, specifically the ANA one. I've read a lot about people on Humira developing Lupus, but always figured that was not a possibility in my case since there's no "achy feeling".

CrazyHarry - I do in fact life in the So. Cal area, Torrance to be exact. If you could shoot over the names of some people I'd greatly appreciate it. If you know of any highly regarded gastroenteroloists that I should look into, please mention those as well.

Julia Hill - Quality of life is indeed very important, and it seems at this point my choice is either Crohn's symptoms or these infection symptoms. The only thing keeping me from stopping the Humira cold turkey at this point, is the fear that there are no better drugs to move up to. Once I stop the Humira, the only choice is to go back on some other biologic. It's going to be a tough decision.

Homeboy - I've mentioned a reduction in dose to my doctor, and apparently that's not how the drug works? From what I've heard, due to the 2 week half life of Humira, once you get past that point the chance of building a resistance to the drug grows exponentially.

mmckenna - My immune system does indeed feel beat down. Sorry to hear that Remicade had some nasty side effects on you. Biologics sure are a hell of a drug, huh?
Diagnosed with Crohn's disease February 2007, currently on Humira bi-weekly and Pentasa 1000mg 2x daily


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/29/2010 2:06 PM (GMT -7)   
Mike -
I live in San Diego, so it will be a little bit of a trip for you as all of my docs are here, but it could be worth it. Come down on a Friday and make a weekend trip out of it as you may be able to hit up more than one on one day if you can line up the appointments. It also may get expensive cos I don't think any of them accept insurance, but nothing ventured nothing gained, right? My email is listed in my profile. Hit me up there and I'll hook you up with names and numbers so you can contact them and see if it is worth your time and money. i make no promises that they can help you or that they can help you to the degree they've helped me, but like i said, nothing ventured nothing gained.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


P4NDOR407
New Member


Date Joined Feb 2013
Total Posts : 1
   Posted 2/16/2013 8:39 PM (GMT -7)   
Hi there,
I would suggest going to see a naturopath, a good one, and they can do tests on you and prescribe an anti parasitic, pre biotics probiotic etc, or whatever else you need to reverse this issue. I also suggest you look into vegetable juicing and avoid GMO foods like the plague as chronns disease sounds exactly like a reaction to gmo foods seen in tests on animals. They arent safe so don't beleive the hype.
I take humira also but for a different thing, RA. If you have a poor diet, your problem will only get worse, seek information about organic nutrition immediately, do not go for traditional medicine, its only made to make the companies rich.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 5:24 AM (GMT -7)
There are a total of 2,732,451 posts in 301,021 threads.
View Active Threads


Who's Online
This forum has 151186 registered members. Please welcome our newest member, debbixij.
196 Guest(s), 5 Registered Member(s) are currently online.  Details
Georgia Hunter, 73monte, NewspaperLover, Tudpock18, Nomar Lupron 4 Me


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer