Humira has destroyed my immune system

[cleanerupper]

I'm glad I found this place. It looks like there is a lot of knowledgeable people here that are floating in the same boat as me. If you have time to read it, my full story is below, or you can skip to the end for Cliffs Notes.

I was diagnosed with Crohn's in March 2006, and had a long unsuccessful trial with lots of drugs, including Pentasa, Prednisone, 6MP, Immuran, Methotrexate, Entocort, and Cipro. Humira was accepted for treatment of Crohn's by the FDA in February of 2007, and my doctor placed me on this medicine within a month. After an extremely tough year of bloody poop, hospitals, drugs, and blood tests, this breakthrough medicine gave me new hope.

I was literally on top of the world from March 2007 to August 2009. Life was great, the Crohn's was in complete remission, and the only issues I had were the occasional loose stool or nausea. I was going to school full-time, getting awesome grades, and maintaining a healthy eating and exercise regimen.

It seems that my days living the high life were limited, and the wonder drug began to show its ugly side. Beginning in Fall 2009, I battled what seemed to be a simple runny nose. Like most people who take their health for granted when things are good, I thought nothing of it. Things took a dramatic downward spiral right around Thanksgiving 2009, when I was slammed with a terrible fever.

Fast forward to today, December 2010. Ever since the end of last year I have been battling constant tinnitus, ear and eye pressure, stuffy nose, chills alternating with hot flashes, and extreme unpredictable fatigue. These symptoms have made me skip semesters at school and have to take several days off work throughout the past year. The only possible cause that lead to these symptoms is the immune-suppressing properties of Humira.

Here is the list of doctors I've been to, along with their opinions of the matter:

1) Primary Care - Suspects sinusitis, treates with antibiotics. Slight improvement, but symptoms return one week after finishing antibiotics.

2) Gastro - Refuses to admit any correlation with the Humira and insists that I do not skip a dose. Refers me to an infectious disease doctor.

3) Infectious Disease - Admits to have seen plenty of Humira patients with viral sinus infections. Believes that the use of antibiotics will be counterproductive and the only way to resolve my symptoms is to stop the Humira.

4) ENT (Ear, Nose and Throat) - Suspects sinusitis and sends me for allergy testing. Allergy testing shows numerous allergies to pollen, grass, dogs, and cats. Orders a CT scan on sinuses, which I am getting done on December 22.

As you can see, a potential piece of the puzzle was found with my allergy test. Unfortunately, popping a Zyrtec only offers me relief in one dimension, while I'm still left with most symptoms, including the debilitating fatigue. To give you some perspective on how exactly I feel on a daily basis, think back to the last time you caught the flu. You know the day after, when you're feeling better, with no temperature, but something is still not right? That's exactly how I feel every day.

I've been doing extensive reasearch and reading on Humira's side effects and believe wholeheartedly that this medicine is the root of my problems. Discontinuing the medicine on my own free will shall prove to be a double edged sword. If I stop, my non-existant Crohn's symptoms may return with all of their bloody diarreah wielding fury. On the other hand, if I keep shooting this poison into my gut every two weeks, this damned mysterious infection will almost certainly render me handicapped.

Thank you so much for reading and I appreciate every little bit of input! You people are the only ones who can help me

CLIFFS: Humira has went from a wonder drug to an immune system destroying terror, but I'm too much of a wuss to stop taking it. Do I stay on and deal with a never ending chronic sinusitis, or discontinue and risk ending up in the hospital with a flare?

 

[beth]

As an interested party rather than a doc, I'd question Humira being the direct cause of the viral symptoms and 'destroying your immune system'... Humira will knock down your immune system, due to the mechanism it uses. However, I don't believe you will know if it is destroyed until you stop the Humira.

So, my thinking would be (due to my experiences on it) to reduce the dosage of Humira gradually and see what happens; so if you are weekly delay by a day so go 8 days between injections. Or if fortnightly, go 15 days. See what happens. If your sinus troubles improve at all and any Crohn's symptoms are managable then delay another day; 9/16 days/etc. Until you have quantitative data to work with you are just guessing. It does sound like you will need to reduce or come off the Humira to fight the infection/virus, but may be able to go back on it once you are clear.

Good luck!

 

[CDDad]

Well, the decision is which is worse, your current condition, or a Crohn's flare? if Humira is hurting more than helping, then stop it. Talk to your GI doc about another drug. If he will not listen and insists on Humira, find a GI who will listen.

But, I do always say, if you don't control the inflamation, you might end up like me one day, with no colon, rectum or anus. Won't be tomorrow, but maybe in 20 years.

 

[Rebecca85]

Have you had full blood work done recently? My docs were concerned because I am on azathioprine and I have had many colds recently, with atypical symptoms such as tachycardia (fast heart rate). So they have checked white blood cells, vitamin levels etc to see if they can determine what's going off. Still waiting for results!

 

[My Butt Hurts]

Did you just put Cliff Notes at the bottom of your post? That's awesome!

I'm not sure if this will help, but do you HAVE to take antibiotics for a sinus infection? I seem to remember a long time ago, I took Flonase, which was a steroid nasal spray and it cleared my sinus infection up in no time.

The way I see it (and I could be wrong) is that our immune systems are overactive with Crohn's, and the immunosuppressants bring it down to a normal level, not diminish it so much that we catch everything. I have been on Humira, then Remicade for 2 and 1/2 years now, and I have been sick less now then in my whole life. Maybe it's different for everyone though.

Anyways - good luck figuring something out, and welcome to the forum.
MBH

 

[bry33]

well i've been on all of the shootable drugs..lol remicade, humira, cimzia my gi likes me to keep him updated on when im not feeling good but sometimes i don't do that but what you are supposed to do when you have an infection is to stop taking it just until you get over the infection i stopped taking the humira in the winter of 09...swine flu outbreak at school...i didn't want to get it i really didn't have my docs approval but i did it anyway cuz there was no way i was going to get that thing and die from it and then i went on cimzia in august and then got shingles in oct i called my gi doc this time and he told me to skip the shots until the rash is gone and i feel better so i skipped a month of it and started it again just on saturday i'm not trying to encourage anything just you know your body best and you have control over your medical treatment

 

[cleanerupper]

@Beth: knocking single days off of my treatment schedule does sound good in theory, so it's something I'll run by my GI doctor in my urgent appointment scheduled for tomorrow. I know I may sound like a babbling hypochondriac in my original post, but please understand that this has been happening for over a year. I need to stop feeling like crap and stopping Humira is the single thing that has not been attempted.

@CDDad: Obviously controlling the inflammation the first priority. Even if I stopped Humira and felt perfectly fine for the next 20 years, there would inevitably be a large buildup of nasty scar tissue in my gut. Since I prefer not to have a ticking time bomb anus, staying on some sort of strong (biologic) treatment is a no-brainer. The only question remaining is that of the drug choice and dosage. Do I stop for a day, a few days, a week? Do I switch to Cimzia or Remicade? These are questions that I will push on my GI appointment tomorrow.

@Rebecca85: I've had bloodwork done several times and everything comes back normal except for WBC and Platelets, both which have been quite low ever since beginning the Humira. My doctors have told me there is nothing to be alarmed about and that many "perfectly healthy" people run low counts in these areas. Call me a conpiracy theorist but are these docs just feeding me BS to calm my nerves? I understand they probably do not want me to go rogue and stop the Humira, which will cause more problems than it is fixing.

I've also dealt with fast heart rate on several occasions, which seems to be linked to three things: allergies, infection, and anxiety. Tachycardia can be a never ending cycle of actual sickness and sickness related anxiety. The number one calming agent for me is telling myself "It is all caused by anxiety. It's all in your head."

@My Butt Hurts: I wrote a freakin' novel, so Cliffs Notes are great for those looking to get straight to the point! I have tried Flonase in the past and it helped me tremendously. Unfortunately, the steroidal properties of the Flonase gave me a whole set of undesirable GI symptoms. Perhaps there are other non-steroidal alternatives, or is surgery the only choice?

Every drug that I've ever taken for Crohn's has had an extremely high theraputic effect, to the point where I've had to suddenly stop. 6MP, prednisone, Immuran, and Methotrexate have all made me severly neutropenic even when taken in extremely low doses. Perhaps Humira is doing the same thing to me, and we need to reduce the shot to once every three weeks? I'll find out the answer at my GI doctor's appointment tomorrow.

@bry33: Did you flare at all from skipping those shots for a month?

 

[Rebecca85]

I would be concerned that the low wbc is what is causing you to get sick. Is there any supplements you can take to boost your immune system but not interfere with the humira? As for the tachycardia/ anxiety, I think you hit the nail on the head! I am going to be cutting back on my working hours to try to reduce stress!

 

[tiloah]

I'm not sure what that Infectious Disease doc is getting at. Sinus infections are notoriously difficult to treat, even in healthy people. It could be the Humira causing it, but the fact that you were on it for two years without this problem argues against that. In most people, a viral cold or allergies lead to inflammation which allows the bacteria to invade and stay there. There are TONS of people dealing with persistent sinus infections who are not on immunosupressants.

Have you considered seeing an allergist? Immunotherapy might help to reduce the inflammation, as would an antihistamine/decongestant combination and as mentioned above, a steroid nasal spray, which give your body a better chance at fighting any nasal infections that come along. The symptoms you list off sound like allergies though; the bacterial infection itself may just be a compounding factor.

If Humira "destroyed" your immune system, you wouldn't have allergies.

In any case, I hope you get it figured out and start feeling better soon.

 

[Fourlocos]

I am a parent of a Crohn's sufferer and I have had chronic sinus problems for most of my adult life. It is very hard to treat and my CT scans have come back normal at times even though I am dizzy and unwell with horrible face pressure/pain. Other times I have had CT's that show huge pockets of infection. Either way antibiotics don't always work and have to be taken for 4-6 weeks sometimes. I understand your upset because it is hard to live with, I would try what was suggested if you haven't already and go with saline sprays and Nasonex or another steriod spray.

 

[fateful_one]

When I was on Humira I was sick all the time, even had Pneumonia! My doc at the time wouldn't listen to my complaints or concerns about the drug. Shortly after my bout w/ Pneumonia I started having low grade fevers that wouldn't go away, I was dizzy, feeling generally unwell and off, was pale, etc. I went to my primary care doc, since my GI was so unhelpful and she admitted me to the hospital imeddiately because I had such a low white cell count. I was put in isolation and spent days in the hospital and of course, it totally sucked.

I was told that this is a rare side effect of Humira, and happens to very few people.

When was the last time you had a CBC done to check your white blood cells? If you haven't in the last 2-4 weeks, you should ask to get rechecked.

Good Luck!

 

[tmgread]

I know this will seem a bit lame, but you might want to try irrigating your sinuses. I had a sinus infection that just wouldn't clear up, but I finally stopped it by regularly using a neti pot. Singulair for allergies might help also. I'm having immune system problems also, but I only take Lialda. When I first started teaching, almost 20 years ago, I was constantly sick from every germ the students brought into the classroom. After a couple of years of teaching, I hardly ever got a cold. I was diagnosed with Crohn's almost a year ago and now I am constantly sick. I just go from one cold to the next. I was hospitalized with the flu last Spring. It just seems like I never completely recover before I get sick again. I haven't had a sinus infection from all of these colds because of the neti pot, but it's still miserable.

 

[Zoodles]

If you are concerned about the use of flonase since it is a steroid- go for rhinocort. This contains budenoside the same active ingredient in entocort.

Another vote for nasal irrigation. I've had sinus issues for years and find them to be wonderful

 

[Slando]

Would love to get in contact with the original poster about this. I'm having the same exact symptoms with the constant sinus infections and being on Humira. Any resolution?

 

[Agent99]

The below paragraph comes right off the Humira website. Note the reference to sinus infections.

Common side effects of HUMIRA include injection site reactions (redness, rash, swelling, itching, or bruising), upper respiratory infections (sinus infections), headaches, rash, and nausea. These are not all of the possible side effects with HUMIRA. Tell your doctor if you have any side effect that bothers you or that does not go away.

 

[cleanerupper]

Just to give everyone an update:

I am still on the Humira but have since been put on long-term Ciprofloxacin treatment, which has made a vast improvement in my sinus symptoms. My current dosage is 1 x 500 mg pill per day. Anyone on Humira with sinus problems should definitely give Ciprofloaxacin a try.

 

[Late]

Hello I came across this post through google. I was wondering if cleanerupper is still around, and can provide an update?

I went through a nasty battle with C.Diff earlier this year, and have not been the same since. I tested negative for c.diff over 6 months ago.

I have been having very similiar symptoms as the OP posted in this thread. I have been on Humira for many years with no problems, until I had C.Diff. Fatigue, constantly picking up infections, fever, feeling like I have the flu, and swollen lymph nodes. I had an ultrasound that says they are lymphadenopathies with benign sonographic features right inguinal area(groin), and I also believe I have mesenteric adenitis which comes and goes.

I have tried antibiotics which cleared up my runny nose, but I am very reluctant to use them at all. The one thing that is working wonders for me is acyclovir. It has completely stopped my fever, fatigue, and general flu like feelings, but I have to take it 3-4 times a day 200mg. If I miss a dose then everything starts coming back, but it also goes away shortly after taking acyclovir again. Because of this I believe the root of my problem is viral infections. I have been tested for HIV, negative, TB negative, Typhoid, negative, many other strange infections, negative, several stool tests repeatedly for ova and parasite, all negative. HSV2 is positive but I have never seen it do anything like this to me.

But going from weekly humira to every other week has made the most difference. My every other week injection was due yesterday but I decided to not do it, and see what happens. I am feeling better, and my lymph nodes are not as swollen.

I have seen so many doctors, and I am now working with an infections disease doctor due to such severe staph infections.

After reading this thread I am starting to think that C.diff and vancomycin wiped out my immune system. Humira has kept it suppressed. I don't want to stop taking it completely, but I am curious to see if I started doing injections every 3 weeks then maybe my immune system could pick back up and fight this stuff off. My crohns is stable right now.

If cleanerupper is still around I would appreciate hearing how things went for you with this problem.

Thanks