HealingWell
Search Close Search
☰

Mono/Remicade Update #2

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2013 4:25 PM (GMT 0)
I'm at the lab getting ready to draw blood for 12+ different tests...

Present:
-Had Remicade infusion yesterday, (8 days late).
- Saw infectious disease doctor today.
- Getting tested for actual Epstein Barr virus particles.

Future:
-If they find replicating EBV virus, they are going to scan my stomach to look for enlarged lymph nodes.
-If I have enlarged lymph nodes, I should get off of Remicade before it turns to lymphoma.

My ID doctor was awesome in my opinion. I'm very comfortable with his care and feel good about being able to do what's best for myself with his help.

I was feeling many times better the last day before my infusion. After it I have felt sick again. :(

Obviously something is going to change within the year.
Posted 4/12/2013 4:47 PM (GMT 0)
12 views and no replies...nobody cares about you, bro... ;)

JUst kidding, what is the EBV virus?
Posted 4/12/2013 5:05 PM (GMT 0)
Sounds like you have a good and thorough doctor on your side, which can make a huge difference.

Somedude, EBV is the Epstein-Barr...mono.
Posted 4/12/2013 5:24 PM (GMT 0)

Somedude said...
12 views and no replies...nobody cares about you, bro... ;)

JUst kidding, what is the EBV virus?

Ya... no love for me! lol

So, I made an appointment with my GP on Monday to talk over the amino acid therapy. Surgery looks like at least a 50% chance this year if I don't find a miracle cure for mono or UC! I'm praying/hoping something turns out well for me here before I would need surgery!
Posted 4/12/2013 5:33 PM (GMT 0)
hey, you're really being pro-active with this, which is a good thing! The ID doctor sounds really on the ball- not much else you can do, hope for the best & rock it! So does the immune dcotor think all biologics are a no-no (based on the lab results), or just the Remicade? Can you go to Humira?
Posted 4/12/2013 5:36 PM (GMT 0)
The immune doctor actually had me get my Remi infusion. He said it's too early to know if Remi is affecting me. At this point though, it's obvious to me that it is.

Both the Immune and ID labs will be back in about a week, since they had to send some out. Then we go from there.

Can I switch to Humira? I don't know. I hope so, but it's hard to tell. Seeing my GI doctor takes six weeks. I think there is definitely market share to be gained by going into that field!
Posted 4/12/2013 5:40 PM (GMT 0)
I'll tell you what you do.

You have surgery, then you get rid of the mono, then you go back on remicade and everyone is happy.

You are happy, you got rid of the mono
The Big Pharma is happy cause they still sell you remicade

and there we go.
Posted 4/12/2013 5:57 PM (GMT 0)
Sounds like your on the right track to finding some answers. Keep us posted.
Posted 4/12/2013 11:03 PM (GMT 0)
Can't believe some doctors are actually trying to figure something out instead of just throwing their arms up in the air and saying, "Hey, we can treat the symptoms." You've got me jealous now.
Posted 4/13/2013 2:28 AM (GMT 0)
Gary, this was a really good day for me with physicians. The ID doctor, while I was there, went out and called my GI doctor. He actually got a hold of him, and they talked. This kind of collaboration is amazing.
Posted 4/13/2013 3:56 AM (GMT 0)
That's great.
Posted 4/13/2013 1:01 PM (GMT 0)
Which labs did you have done?
Posted 7/16/2014 9:45 PM (GMT 0)
I know this thread is a little old. I just got diagnosed with Mono yesterday. I'm 28 yo and have had UC for 13 years. I was supposed to have my remicade infusion last weekend but postponed it because I was being treated for strep throat. In all my 10 years on remicade, I have never experienced this kind of predicament. I texted my GI but haven't heard back from her yet. My mono seems pretty mild besides the nasty rash, but I don't suspect it has anything to do with my remicade treatments. Remicade has been a miracle drug for me and my UC. No matter how bad I flare (only because I can be somewhat negligent with my body), I see results within hours of the infusion. In your experiences, is the remicade going to prolong my recovery time from the mono? I can only put off not having remicade for so long before I flare so bad it affects other parts of my body. But I don't want to have mono any longer than the shortest amount of time possible. As it is, I'm thinking this has been going on for at least 4 weeks. Anyway, I'm sort of in the dark here. Luckily and unfortunately I am on summer break.... Thanks for a reply if you get to see this!
Posted 7/17/2014 3:00 AM (GMT 0)
My daughter had mono twice while on Remicade. The first time it hospitalized her due to the enlarged lymph nodes, and the doc called from the ER and said it was lymphoma. Then the infectious disease guy confirmed it was EBV and I started breathing again-2 days later.
She stayed on Remi, but delayed it and stopped 6mp. Immune system needed to fight, so it was a tightrope walk.The virus was stubborn, and went quiet, but resurfaced powerfully 2 months later. Then the Remi levels were low and the drug stopped working. Can't say that would happen to you, but it's been a tough year without a biologic. On the other hand, a virus like that can do its own permanent damage.
Get to good docs you trust. Take the antibiotic for the EBV, and I have hope that you can resume the Remi when you are a bit stronger. Make sure your levels are checked later so you can fight off the UC. Worry in order...
Posted 7/17/2014 3:00 AM (GMT 0)
MsScienceTeacher,

Hello and welcome to the forum. Sorry to hear you're not feeling well. I am the original thread poster here. My situation is much more complicated than I originally thought back when I made the post...

Did I have mono? Yes, but it was earlier than this post. I have had another issue with horrible body aches that feel like they are mono. We ran these labs the post refers to with the infectious disease doctor because I thought I still had it, and he determined that the EBV (mono) virus was not replicating in my system, so something else was causing the issues.

After intense investigation I found nothing wrong with me through many tests. I have since found many anecdotal reports of similar pains while on Remicade.

BUT... I did have mono while on Remicade. I had it from November 2012 through early January 2013. I didn't feel much different than the remicade pains, but I know I had it because my wife (gf then) got right at the incubation period after we decided it must be safe to kiss again. :-/

I had mono before starting Remicade, and honestly the time of having it was not much different. Each time I was affected for 1.5 to 2 months total to some degree... with a couple weeks being the most intense.

In summary...
-My doctor's office had me get infused while I had mono. They have a policy that if you have a temperature under 100.5 and it hasn't been higher lately then they usually go forward. I cannot recall if they knew I had mono, or that I told them I might have it. But, I got diagnosed November 9th ish with mono, and had the infusion early December... and got over mono in January. It didn't seem to make matters much worse.
-My two times with mono were very similar (actually hurt worse the first time) even though one I was not on Remicade and the next I was.

I'm sorry but I'm a bit scattered in my thoughts lately. I have a ton going on in my life so I hope this quick pop in to the forum helps. I'll try to check it again in case you have other questions.

Feel better :)
Posted 7/17/2014 5:16 AM (GMT 0)
MsScienceTeacher,

I don't think I've had mono while on Remicade (I had it in high school), but my chronic fatigue has been worse. For low energy, make sure you're getting enough vitamins, especially iron, the B vitamins, Vitamin D, and magnesium.

The thing that drew my eye was your comment about strep. I wanted to make sure you knew that the #1 listed side effect of Remicade is respiratory infections. I know about this very well, as I've had respiratory infections for at least 40% of the time I've been on Remicade. I temporarily stopped infusions (12 weeks) because of this, but ended up starting again in May because my IBD symptoms got much worse. Lesser of two evils I guess.
Posted 7/17/2014 2:49 PM (GMT 0)
Also worth noting...

I had swollen tonsils since some point after starting Remicade 2.5 years ago. In December 2013 I had them taken out and I have not been sick since, which is highly uncharacteristic of me. I was afraid the mono virus or something else was in them. They stayed swollen, and would get white spots on them off and on semi-regularly.
✚ New Topic ✚ Reply