Is sinus infection a common side effect of Remicade?

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 8:07 AM (GMT -7)   
That headache I had yesterday is more pronounced in the sinus region this morning and I am running a low grade fever (99.5).
I had 7 sinus infections last year and when I get one I always have the sinus region headache and a 99.5 fever. I haven't had a sinus
infection since I moved to Texas though (9 months now)! So if this turns out to be a sinus infection, it would seem to be a Remicade side effect.
It also seems odd to get a sinus headache/infection while I am on 20m of prednisone! Not sure if I should go in for an antibiotic since I believe I'm just
getting into remission with my UC.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/8/2009 8:21 AM (GMT -7)   
Well, I wouldn't immediately blame the Remicade if it does turn out to be a sinus infection. Prednisone weakens your immune system, too, and you've been really ill lately, so your body has to be depleted. Besides, maybe there's something that's blooming in Texas right now that you're allergic to.

Have you thought about seeing if you can find a therapist who has good knowledge of autoimmune disorders (and therefore understands the treatment for them, including the risks)? You seem very anxious about Remicade. It took me quite a while to realize I was having issues with postpartum anxiety, but once I realized that something was wrong and got help (I saw a counselor and was started Zoloft), things got better immediately. I didn't realize how bad I was and how skewed my thoughts were until I was better.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 8:39 AM (GMT -7)   
I'm definitely anxious about Remicade, no doubt about it, my doctor wouldn't put me on it at first because of the risks. However, I have been sick for 3 months and feeling GREAT for the last 2 weeks until
yesterday (day after my 2nd Remicade). I have been SO excited to be feeling better! I ran a fever with my UC every day for nearly 3 months so being fever free and having 1 BM a day for the last 2 weeks has been awesome! That is until I woke up this morning with a terrible sinus headache and a fever. All of the consent forms with Remicade tell you about infection and "inform your doctor immediately" etc. I would not normally go to see or call my doctor at this point with a sinus infection, but am I supposed to because of the Remicade?

I don't think I'm being too anxious. Who can start something like Remicade and not have concerns?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/8/2009 8:44 AM (GMT -7)   
I can! After all these years, I can.

I think you are making yourself sick with worry, Michelle
But call your doctor, see if he/she diagnoses a sinus infection and simply get it treated.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 8:51 AM (GMT -7)   
Peety,

I'm envious of everyone that doesn't worry about the risks. In the hospital when I was begging for the Remicade, my husband said "lymphoma is BLOOD cancer if you get that your life is over, a colectomy is a cure for the UC and you'll never have colon cancer either". After we both gave it much thought, I decided Remicade was a much better option than surgery, but some people don't feel it is. I talked to my doctor at length about it yesterday and he actually shares my concerns and said we can discuss continuing the treatment as time goes on. To me, it's like playing "russian roulette" there's no easy answer. Who the heck wants a colectomy but I sure as hell don't want lymphoma or a rampant serious infection either! I think I'll finish the loading doses and take my chances on colazol maintenance with a plan to do 6mp if that fails. I've never done 6mp before so maybe thats a valid idea!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/8/2009 1:11 PM (GMT -7)   

I agree with fruitgirl--maybe you should talk to a therapist about your anxieties. It really does help. Don't worry so much--there are so many people who are on biologics and are doing okay. And at least we do have a cure, unlike RA, Crohn's, etc. As for the lymphoma, I've been told that all the UC patients who've gotten it were on Remicade and immunosuppressants together.

And the sinus doesn't have to be from Remicade. Just call your doctor and let them know to be on the safe side.


Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 2:43 PM (GMT -7)   
bookworm21 said...
I agree with fruitgirl--maybe you should talk to a therapist about your anxieties. It really does help. Don't worry so much--there are so many people who are on biologics and are doing okay. And at least we do have a cure, unlike RA, Crohn's, etc. As for the lymphoma, I've been told that all the UC patients who've gotten it were on Remicade and immunosuppressants together.

And the sinus doesn't have to be from Remicade. Just call your doctor and let them know to be on the safe side.


Well if anxiety is being concerned about your health and medication side effects, I don't think adding a medication to the list is the answer. I'm just doing my research and being informed. Its not like I'm losing sleep over the whole thing. I've lost too many people in my life lately due to cancer. If you spend a good deal of time taking family and friends to chemo, you will think about the risks of cancer.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 5/8/2009 3:59 PM (GMT -7)   
I think the point people are trying to make is that from your posts, it's clearly obvious you are very worried about taking Remicade. Since you have had your infusions, every little ache & pain you seem to relate to the infusion- which yes, can be easy to do, I've done it myself. I think you really have to ask yourself- just yourself, not the other posters, if the risks are worth it to you. You seem to feel that they're not worth it, yet you're still planning to do the infusions. Which seems to be causing you a great deal of mental stress. Don't get me wrong- I'm not saying not to post your feelings, but when so many of your posts seem to be seeking reassurance about your decision to take Remicade, you have to second guess that decision & say "Am I doing the right thing for me?". I know where you're coming from- my 2nd Remicade dose put me in ICU for a week, in very very bad shape. And I swore I would never take it again...here we are, 2 years later, still on the stuff! After a lot of soul searching, I decided that I was willing to risk the possibility of something bad happening down the road, in order to live my life to the fullest today. Are you? That's really the question- it's pretty simple, but hard to decide. Good luck! And in the meantime, try not to stress over every ache & pain- they're likely unrelated to the drug.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 5/8/2009 4:04 PM (GMT -7)   
Come to think of it, since I've been on Remicade I do seem to have a lot of upper respiratory issues and coughs and stuffy noses seem to hang on forever. But they haven't progressed to infections.

The lymphoma side effect is pretty rare, even more so if you aren't on 6MP or Imuran or the like.

If you are going to obsess about the effects you definitely may want to consider the surgery (yes, it is the "cure" but it is rather extreme in my mind, even if I will probably end up there at some point). If you think your husband may blame you if you DO, unfortunately, get one of the side-effects that is something you two will want to address. Either way, you should consider therapy to help you reach a decision about treatments that you will be comfortable with.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/8/2009 4:13 PM (GMT -7)   
I think Eva Lou really got what I was trying to say.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/8/2009 5:13 PM (GMT -7)   
Going to a therapist doesn't mean that you'll be prescribed with anti-anxiety meds. In fact, therapists are not allowed to prescribe meds since they don't have a MD.
 
I agree with what Eva Lou said. If Remicade is causing you a lot of stress and anxiety, then you might want to rethink it.

Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/8/2009 7:42 PM (GMT -7)   
I guess I will think twice about asking others here for their experiences. I wasn't fretting over having a sinus headache and backache, just asking if it was possibly Remicade related (so I know what to expect next time). I've only had 2 infusions so I don't know much yet about common side effects and I thought this was the place to ask, but maybe not if I'm going to be judged for everything I ask.

As to whether or not to take it, I've obviously made the choice to do so and I won't be discussing it here or asking any more questions about it. I'm starting to feel that people are responding to my posts like I'm questioning something as simple or common as Tylenol and it's silly to ask questions! This is supposed to be a UC forum so I come here to ask questions relevant to my UC and now since my treatment is Remicade, I was asking about that.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 20mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/9/2009 1:47 PM (GMT -7)   
We're not judging you! It's upsetting when you seem to be expecting the worst, when some of us are thinking positive and expecting the best. So we want you to think positive, not worry so.

I'm not sure why you would believe you would not go back to the condition you were in before, if you quit your Remicade treatment. It's just not the way this disease works. But if you don't want to stay on Remicade or other strong medicines now, you might as well prepare for surgery now and get it over with.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/9/2009 3:09 PM (GMT -7)   
Peety,

I've had UC for 13 years and flared only every 2 to 4 years. I stopped taking colazol 6 months ago due to extreme hair loss (and having never had the experience of suffering such a bad flare before). I guess I feel like it's my fault this flare happened and I always did well with colazol maintenance. I was actually feeling better in the hospital with the steroids the day before I got the Remicade so it's also hard to say that the Remicade is responsible for the remission.

Maybe I am foolish to believe once I am in remission I could stay there with colazol as I did in the past, and I'm really onlyh asking questions to get opinions from everyone to help me make a decision. I just tend to ask a lot of questions and do a lot of research before I make a major decision. I did come to the conclusion that most of the lymphomas with Remicade were in men and those on 6mp and Remicade so I am going to stay on the Remicade because the risk of or idea of surgery is not something I am prepared to do. I wish I could get approved for Humira simply for convenience.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/9/2009 4:15 PM (GMT -7)   
Did you try to get approved for Humira?

I'm hoping someday (soon) Humira will be approved for UC by the FDA and be covered so I can then switch to it, also for the convenience. The infusion room at my doc's office is a dull place, a tiny room that barely fits a lounge chair, with harsh florescent lights (I ask to have them turned off). It would go faster with a TV or, even as much as I guard my privacy, with someone to talk to. But it will do for now!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/9/2009 5:45 PM (GMT -7)   
Peety said...
Did you try to get approved for Humira?

I'm hoping someday (soon) Humira will be approved for UC by the FDA and be covered so I can then switch to it, also for the convenience. The infusion room at my doc's office is a dull place, a tiny room that barely fits a lounge chair, with harsh florescent lights (I ask to have them turned off). It would go faster with a TV or, even as much as I guard my privacy, with someone to talk to. But it will do for now!


I didn't try. My GI said they never approve because its not FDA approved. The infusion room at my office has 4 recliners and it's a rheumatologists office so the other 3 people (not a private room) are there with walkers, etc. There's no TV it's very boring!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/9/2009 6:34 PM (GMT -7)   
Could be due to remicade, but in general I see more sinus infections this time of year. If you moved to a new area and have only been there 9 months, that means this is your first spring in that area too. Could also be a contributor.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/9/2009 7:40 PM (GMT -7)   
Dr-A said...
Could be due to remicade, but in general I see more sinus infections this time of year. If you moved to a new area and have only been there 9 months, that means this is your first spring in that area too. Could also be a contributor.


Thanks! I had a bunch of sinus infections in NJ, but this is my first spring in TX so maybe thats it. I'm on prednisone so I wouldn't think I'd get the sinus headache, but I have it.
Last night I ran a high fever and had chills so maybe its a virus. Today I'm still running a low fever. I thought I was done being sick but I guess not!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/9/2009 7:51 PM (GMT -7)   
Well at least your body sounds like it is working good with the fever and fighting off the infection, if that's what's causing it. Let that give you some peace of mind. If your body gets an infection and doesn't have that nice fever as an immune response you could be in trouble.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA

Post Edited (Dr-A) : 5/9/2009 8:54:44 PM (GMT-6)


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/9/2009 8:45 PM (GMT -7)   
Dr-A said...
Well at least your body sounds like it is working good with the fever and fighting off the infection, if that's what's causing it. Let that give you some peace of mind. If your body gets an infection and doesn't have that nice fever as an immune response you could be in trouble.


That makes a lot of sense! I'm not worried, just aggravated that I'm feeling sick again!

Thanks!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Remicade, Apriso 4/day, Prednisone 10mg per day, Rowasa Enemas 2/day, Culturelle

Had 1st Remicade infusion in the hospital 4/22/09, 2nd infusion 5/7/09 (I think the first infusion put me in remission!)

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