I Have Mono... and Remicade Wants It To Stay!

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Thoreau
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Date Joined Jul 2009
Total Posts : 1585
   Posted 2/28/2013 9:29 PM (GMT -6)   
This post is more just for reference to anyone that searches about having long-lasting sickness while on Remicade...

I have been battling mono since last August (over 6 months ago). This is my second infection of mono, first coming a year previous. I almost stopped taking Remicade because I thought that it was Remicade side effects rather than mono. I just wasn't sure after getting two inconclusive mono tests, but finally I got a test that showed a very strong mono infection.

I had been getting better, then my Remicade infusion in December set me back significantly again in regards to mono.

The good news is that I made it through my early February infusion without issue, and really had felt I was mostly done with mono since late January. My throat hurt slightly still at times, and I could sense a tiredness on long days just a bit. But honestly I felt great! I gained 15 pounds within about 6 weeks!

My girlfriend finally got mono unfortunately (my doctor told me I shouldn't worry since she had probably been exposed already... but he was WRONG!). Once she was feeling mostly better I kissed her, and between that and stress lately I'm feeling mono-ish again.

I guess this post is mostly just to say that Remicade seems to be a severe immune system dampener (obviously), and that it takes a long time and a ton of precaution to come out of something like mono.
28 year old male.
Dx 2003. Left sided UC, progressed to mid-transverse colon.
IBS issues complicate things for me a lot.
Remicade since 1/27/12. Clinical remission within 3 months.
----Noticeable change in how I felt after 10-11 months.
Cymbalta greatly helped IBS issues. Stopped because of sexual side effects!
Tried: Mesalamines, mesalamine enemas, steroid enemas, 6mp, entocort, Imuran.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 2/28/2013 9:32 PM (GMT -6)   
:( So sorry to hear you have been sick for so long. I hope that you are on something that is helping you kick the mono and you are well soon!
KIDS, DONT TRY THIS AT HOME - currently pursing remission/cure no meds at a time.

Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 1585
   Posted 2/28/2013 9:36 PM (GMT -6)   
I'm on... rest and tea! There isn't much to help with a virus, although they gave my gf a quick taper prednisone pack and she felt better after a day of taking it!
28 year old male.
Dx 2003. Left sided UC, progressed to mid-transverse colon.
IBS issues complicate things for me a lot.
Remicade since 1/27/12. Clinical remission within 3 months.
----Noticeable change in how I felt after 10-11 months.
Cymbalta greatly helped IBS issues. Stopped because of sexual side effects!
Tried: Mesalamines, mesalamine enemas, steroid enemas, 6mp, entocort, Imuran.

ScienceGirl
Veteran Member


Date Joined Oct 2012
Total Posts : 511
   Posted 2/28/2013 9:50 PM (GMT -6)   
I had to take steroids with mono, but it was IV and given at the hospital--my tonsils had swollen so much that I couldn't swallow!

Hope you get better soon! I'm starting Remicade next week (started 6MP about a week ago) and my partner and I are trying to plan for ways to keep me from getting sick. He's never had mono, but I have, and I'm always worried it'll pop up again!
26yo female
Diagnosed with moderate pancolitic UC 10/07
Updated to severe 2/13 after flex sig + biopsies
Flares: 8/07-12/07, 7/10-1/11, 2/12-ongoing
Currently taking: Asacol HD 6x/day, 6MP, Cortifoam nightly
Former meds: mesalamine enemas (can't currently retain)
Waiting for stupid insurance to authorize Remicade so I can stop being sick!

Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 1585
   Posted 2/28/2013 10:10 PM (GMT -6)   
ScienceGirl, thanks for your reply on this and my other post! Remicade is a blessing. My body is just plain and simple difficult... haha.

I was on Remicade for 7 months before getting mono again. I wasn't on 6mp or Imuran until summer, which I think was what caused my immune system to drop too far.

BUT... lots of people do great on the combo! A guy at my support group has been on 6mp and Remicade for a long time... like 7-8 years or more.

Our options aren't perfect, but if we can keep some quality of life while science figures more out about this disease then at least we have that to be thankful for.

Good luck!
28 year old male.
Dx 2003. Left sided UC, progressed to mid-transverse colon.
IBS issues complicate things for me a lot.
Remicade since 1/27/12. Clinical remission within 3 months.
----Noticeable change in how I felt after 10-11 months.
Cymbalta greatly helped IBS issues. Stopped because of sexual side effects!
Tried: Mesalamines, mesalamine enemas, steroid enemas, 6mp, entocort, Imuran.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 21929
   Posted 2/28/2013 11:21 PM (GMT -6)   
I'm glad your Feb infusion didn't cause issues but I'm sorry to hear about your gf :(

Whenever I read your posts about your mono and Remi, I thank my lucky stars (knock on wood) that my latent mono hasn't resurfaced! It sounds miserable and I'm sorry that you are having to go thru all that.
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Colazal, Remicade (6mp discontinued due to neuropathy)*Unable to tolerate ALL mesalamines*, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular

Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 1585
   Posted 2/28/2013 11:25 PM (GMT -6)   
Red, thank you for your thoughts. I hope your latent mono stays away!!! :)
28 year old male.
Dx 2003. Left sided UC, progressed to mid-transverse colon.
IBS issues complicate things for me a lot.
Remicade since 1/27/12. Clinical remission within 3 months.
----Noticeable change in how I felt after 10-11 months.
Cymbalta greatly helped IBS issues. Stopped because of sexual side effects!
Tried: Mesalamines, mesalamine enemas, steroid enemas, 6mp, entocort, Imuran.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 3/1/2013 12:13 AM (GMT -6)   
Thoreau said...
I'm on... rest and tea! There isn't much to help with a virus, although they gave my gf a quick taper prednisone pack and she felt better after a day of taking it!


As always, I disagree with modern medicine. LOL

crap tons of olive leaf will indeed hit EBV. You can get it cheap on amazon.. make sure to get 20% oleperuin. I take 6-8 a day. (the die off from my own pathogens is intense for me right now at 8) The Rhematologist told me to take atleast 8 if not 10, 500mg capsules a day.

Also you could look into Pomegranate Seed Extract.

Thoreau
Veteran Member


Date Joined Jul 2009
Total Posts : 1585
   Posted 3/1/2013 12:20 AM (GMT -6)   
Thanks for the advice PathogenKiller. I've been round and round the routine and then alternative treatment routes... and nothing is ever very conclusive. My GI doctor says to avoid the strong anti-fungal type supplements like olive leaf and wild oregano oil for fear of limiting Remicade's effectiveness. :-/

I read through a post of yours earlier today. Good luck with the things you have going on!
28 year old male.
Dx 2003. Left sided UC, progressed to mid-transverse colon.
IBS issues complicate things for me a lot.
Remicade since 1/27/12. Clinical remission within 3 months.
----Noticeable change in how I felt after 10-11 months.
Cymbalta greatly helped IBS issues. Stopped because of sexual side effects!
Tried: Mesalamines, mesalamine enemas, steroid enemas, 6mp, entocort, Imuran.

TheAnswersYouSeek
Veteran Member


Date Joined Jan 2013
Total Posts : 2543
   Posted 3/1/2013 1:17 AM (GMT -6)   
I hear you, but I do think the olive leaf has to be 20% and high dose or it is pretty worthless so I just wanted to mention it
http://ameriden.com/research/category/olive-leaf-extract/page/2

Dont know anything about remicade or what one has to worry about regarding interactions tho. Hard to believe that OLE would screw with it.. I think oregano leaf is too harsh for people with IBD.. I wonder if messing with its effectiveness is just one of those things they say or there is science.

Thanks. Im hoping this Rhemy gets all his tests back and can give me some good paths to take. He has a supplement guide (yup.. he sells supplements- so you always have to be skeptical) but he had really good stuff in there that I rarely have run across folks knowing.. so Im hopeful.
KIDS, DONT TRY THIS AT HOME - currently pursing remission/cure no meds at a time.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6021
   Posted 3/1/2013 9:12 AM (GMT -6)   
That's the trouble with all of these immune suppressing drugs. Human beings can have a lot of different viruses and infections on a regular basis and they can come on much more easily while on these drugs and they can be much more severe while on these drugs. If it gets to the point where you have to stop the drug because of these viruses and infections, making your UC worse, then sometimes you gotta wonder if it is worth being on them at all. Some people are in bad enough shape that you have to do something but I think some doctors and patients get too obsessed with remission and prescribe or take these drugs when maybe it is just better to live with livable symptoms than to subject yourself to the ramifications of these dangerous drugs. That's what I do. My condition is not that bad as I have formed stools with no blood most of the time and I would rather just live with my current symptoms than to take the chances with prednisone, immunemodulators, or biologics.
Asacol 400mgs 2 pillsX3; VSL#3 112.5mgs 1 pillX3; Vitamin D3 5000 ius 1 pillX2;Bentyl & Swanson DAO with meals;black cherry concentrate

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, DGL, Monolaurin, slippery elm

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2732
   Posted 3/1/2013 9:21 AM (GMT -6)   
Interestingly, azathioprine and 6MP, paradoxically and counter-intuitively , suppress mycobacetria- at least in in-vitro studies. That said, I recently (with great reluctance) tried Imuran for a few weeks but had to stop because, to a much greater dege than the last time i tried it years back, it induced severe joint pains, apart from mild nausea. These meds are indeed toxic garbage in most respects- itjust so happens that some people (not me) respond well in terms of IBD symptoms.
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