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Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/19/2017 2:32 AM (GMT 0)
Was supposed to start Entyvio, took my TB test. Tested positive for TB. Took another one last Wednesday, that too was positive. It's not in my lungs. It's somewhere else in my body. Saw the infectious DZ doctor today. Lots of tests to find where it is. How did I get this? I've been on Humira and just got off Simponi. Would have never known if I wasn't switching Meds.
So worried about
my UC. Have to take Meds for the TB fior 6 months to a year😢
I'm really upset!
Faith
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 8/19/2017 2:50 PM (GMT 0)
/medlineplus.gov/ency/article/000624.htm
Do you remember having an infection?
I wonder if having exposure but no symptoms of active disease makes it a positive?
q
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/19/2017 3:27 PM (GMT 0)
Hi Quincy!
I don't remember having any infection. I was kind Of surprised that I really never had even a cold. Been on 2 biologics in the last 3-4 years. Boy does time fly. I thought they made a mistake. The infectious DZ doc said I came in contact somewhere. Maybe one of my massage clients. I usually will not work on anyone with a cold. Mystery to me!!!!!
noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 389
Posted 8/19/2017 5:05 PM (GMT 0)
You are at an increased risk for EPTB due to being on immunosuppressants (Humira and Simponi).
Here is an article you might find informative:
blogs.discovermagazine.com/bodyhorrors/2012/02/29/eptb/#.WZhvt1V97IU
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/19/2017 5:21 PM (GMT 0)
Thanks Quincy and noodles! Interesting articles. Having all kinds iof tests the next couple of weeks. Infectious doc said it can be in my colon. Had precancerous polyps recently. Now see a IBD specialist. It's very depressing. He said I shouldn't work(massage therapist) until we find out where it is. Do I tell my clients or not? If I do I probably will loose them.
noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 389
Posted 8/19/2017 6:00 PM (GMT 0)
I believe every county has a Disease Control dept (usually within the Public Health Dept) - I would call your county dept and ask if it is okay to work as an LMT if you have EPTB.
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/19/2017 7:08 PM (GMT 0)
I was told that the CDC here in Florida will be calling me. I guess they have to report any cases of TB . I'm licensed here and New York. Like my post says , I'm screwed. I wouldn't want to be massaged by someone who has TB. I guess I answered my own question. I'm not sure how others would feel.
Going to have to start on the rectal Meds I guess. Didn't need them while on the biologics. Here we go again.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 8/19/2017 10:54 PM (GMT 0)
That's really sad and scary. I am so sorry this is happening to you. I don't think I'd jump the gun and tell anyone, I'd still be hoping it's not possible, though it sounds pretty likely at this point. See what the ID doc thinks. In reality, you may have to tell people to get tested. If you've been exposed, couldn't other people have gotten it? I remember when I was a child I had a grandfather in a nursing home and my mom made us get checked fairly often because you never know.
Poppie
Veteran Member
Joined : Feb 2014
Posts : 2169
Posted 8/20/2017 1:16 AM (GMT 0)
You poor thing..let us know what happens..some people get such bad luck...
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/20/2017 1:35 AM (GMT 0)
I don't want to lose my license for massage. Looking into what the law states. If I don't say something I'm screwed and if I do I'm also screwed. I'm in a real pickle.
All I wanted to do is start Entyvio! UC is a horrible DZ . Just wanted to feel better. Felt so much better on Humira and then Simponi. Of course they start to fizzle out. Is it because I was on them that I got TB? Wish I could know.
noodlesnoodles
Regular Member
Joined : Nov 2015
Posts : 389
Posted 8/20/2017 5:07 AM (GMT 0)
I can't imagine they would take away your license. While pulmonary TB is highly contagious, EPTB "does not spread easily to others" according to WebMD. The CDC describes EPTB as "rarely infectious."
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 8/20/2017 5:04 PM (GMT 0)
Faith...please keep us updated.
I would suggest you do lots of research and compile questions somthat your appointment is on target regarding testing.
What I am thinking now is....get another tb test since misdiagnosis and mistakes are made. Just saying because of the serious implications of the results and your future work, etc.
q
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/20/2017 9:25 PM (GMT 0)
Quincy, Had two blood tests done. Called Quantiferon- TB Gold.
They were done 3 weeks apart. Both came back abnormal positive.
Wish it was a mistake. I was so hoping. Now I have to deal with it.
This week I go for extensive blood and urine. Had all the basics already.
Waiting for my Two GI's to send over records. Failed to say , I was refered 8 months ago to a IBD specialist. Had 2 Colonoscopys that came back with polyps that were pre- cancer. Been having blue dye Colonoscopys every 6 months. Not fun! Now this.
Been doing loads of
research , maybe too much. You can make yourself crazy. If you have any input on this , I would love to hear.
Faith
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 8/21/2017 3:04 PM (GMT 0)
I didn't remember about
the precancerous polyps, but I know you would have mentioned them.
I can only say....if that were my situation, surgery would be my decision asap based on precancerous polyps and now confirmed by limited use of meds because of the TB.
In saying that....I know my limitations and fears and patience based on my personality and thought wiring.
If you believe you will eventually have to have your colon removed, now might be the time.
q
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/21/2017 4:32 PM (GMT 0)
Not taking out my colon unless it's an emergency. I know others have. It's just something I can't wrap my head around. Going to a specialist at this time. Having it checked regularly.
Going to take care of the TB and then go on Entyvio. That's my plan.
The bag thing also scares me. I'm a member of Entyvio Warriors on Facebook. The grafific pictures scare the crap out of me. No pun intended. If it comes to that, I'll have to deal. Not an option for me now.
Been off of Simponi for about
3 weeks. No blood or anything. I know there is 30 cm of inflammation. Always have the rectal Meds . Just emailed the IBD specialist for info on what do next. I'll take it from there.
Faith
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 8/22/2017 2:16 AM (GMT 0)
Sounds like a plan. And interestingly...not surprisingly, tho.....i was going to suggest you use rectal meds 😊 until you're on entyvio.
Good pun!
Please keep us posted....I'd like to know about
the TB process...where, treatment, etc.
q
Faithmac
Veteran Member
Joined : Apr 2008
Posts : 1641
Posted 8/23/2017 1:59 AM (GMT 0)
Will do!
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