Humira and TB

[Grant]

Going to see my specialist tomorrow & it looks pretty certain I'll be going from Humira once a fortnight to once weekly.
My question is has anyone caught TB especially on a weekly dose? I know that TB can be very serious with Humira & its another big step to take. Here in UK there has been a reappearance of TB in very low numbers. Mainly due to immigration apparently.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[beth]

Not heard of anyone catching it personally. It might be possible if you live or work in a high-risk area, but otherwise I wouldn't worry about it.

 

[Mark63]

Have you checked to see if you were vaccinated against it when you were younger? It was usually called BCG and may have left a small mark on you arm.

One of the risks is re-activation of an old infection. That's why the protocol requires an X-Ray before you start the treatment.

Personally, I'd say don't worry.

Mark

 

[Grant]

Yes Mark, had the BCG about 40 yrs ago. But its not terribly good sadly.
Beth, point taken but when your specialist looks you in the eye & says TB whilst on Humira is a killer, afraid that for me anyhow there is an element of worry.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[beth]

Yeah, but it's like the number 17 bus. It comes past but it doesn't necessarily mean it'll lean over and bite you.

Someone might cough in your general direction but it doesn't mean you'll die from their germs. I've been to the hospital here in Cambridge so often in the last few weeks you'ld have thought I'd be dead from meeting all those ill people. But I aint yet!

I'm currently on weekly Humira and have been for a year, been on methotrexate and azathioprine, my only regret is delaying starting the drugs bandwagon for fear of the side effects which let my Crohn's get enough hold to do me serious damage. I'll take the risk of dying from a stray cough.

I think I've stopped worrying about the what if's.

 

[Grant]

Beth, I own up, I'm a worrier. Inherited through the family I'm afraid. Been on the Humira since December 10. But was on Entocort as well & that has masked the effects & when I stopped it the result was agony. But I'd like to give it a go weekly & then stop the Entocort. As my Gastro Nurse said to me, you dont want to give up on any particular thing because my options are limited @ best because of skin problems.
Tks for the reply
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[beth]

Hey I used to be a worrier too. This disease has shown me I worried too much and let it consume me to my detriment. I still worry, but try to only worry about the things I can do something about - thanks to Hubby for that one, and when I have to make a decision think about it entirely logically. Oh and not look back - as in if Humira gives me lymphoma or something nasty then I wont say I should never have gone onto it because it's changed my life, no longer am I spiraling downwards like I was before.

 

[tiloah]

I think the concern is that TB can be deadly if you stay on the Humira if you have it. Regular screening will make sure they catch it (probably sooner than if you weren't taking Humira) if you do get it. I would imagine then they would stop your Humira and start treatment for TB at that point... and once the Humira is stopped you probably wouldn't have any increased risk of dying from TB over the general population? But I could be wrong.

I'm currently on Humira and my doc is going to try to switch me from Humira to Remicade. I had the TB blood test and it was "indeterminate" so they are giving me the standard bubble in the arm test today. I'm kind of worried.

 

[Grant]

Beth, Pleased your doing well on it, I'd almost given up on it TBH but I'm now ready to go weekly if Specialist is ok with it.
Think Crohns & worry go hand in hand & I know its a problem that I have to overcome. Getting some good health for an extended time will help no doubt.
Tks for the replies
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[Grant]

diesanduhr, think Humira stays in your system for many mths after you've stopped it. However I think they may well have AB's for just this scenario. Its if it goes unchecked that it can be deadly. (coughing up blood) Hope your test goes negative & I'm sorry if this has worried you.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[MissMandy]

just for the record, what are the signs and symptoms of TB?

 

[Grant]

Hi MissMandy,
Just pulled this off from the web.

" chronic or persistent cough and sputum production. If the disease is at an advanced stage the sputum will contain blood.
fatigue.
lack of appetite.
weight loss.
fever.
night sweats."
Some of those are very Crohns orientated aren't they. But its the persistent cough that is the giveaway. As Beth says & I know she's right you can worry about anything. I'm going to try & put it to the back of my mind.
Take care
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[tiloah]

diesanduhr, think Humira stays in your system for many mths after you've stopped it. However I think they may well have AB's for just this scenario. Its if it goes unchecked that it can be deadly. (coughing up blood) Hope your test goes negative & I'm sorry if this has worried you.
Rgds
Grant

It may take many months to clear Humira from your system entirely, but the suppression of your immune system might not last that long? I would expect it would become less over time?

I wasn't too worried about the TB test, just a bit freaked out that it was "indeterminate." I have it checked in a few hours and so far my arm looks totally normal so I think I'm in the clear.

 

[Catie]

Hi Grant,

If you're worried about it, get your Doc to do a Mantoux test before going to weeklys and then relatively regularly just to put your mind at ease. I'd have thought that you'd only really be at risk of catching TB if you were working in a high-exposure environment, such as a thoracic ward at a hospital. I'd imagine just walking the streets/corridors etc wouldn't put you at too great a risk.

Diesanduhr - not sure where you are, but in Oz it's more common to have the Mantoux test before a blood test because they are much more determinate, don't freak too much! I'm getting my latest Mantoux read tomorrow, fingers crossed they both come back negative

 

[tiloah]

Interesting. I was told the new blood test is more efficient and accurate. But I guess that didn't work out so great for me. Hehe. My bubble test was negative, btw. It's the little things.

 

[Kazters]

the problem with humira is it can cause TB and there is an increase in the UK with it at the moment! i was offered a trip with work to india but couldnt go for this reason also you are morpe suseptable to many things because humira reduces your immune system!

what i have been told it if i have been around anyone with it, i need to get checked

 

[beth]

<coughs slightly> Humira cannot cause TB. It can reduce your immune system effectiveness in fighting a latent infection, or allowing a new one to get a foothold.

 

[Grant]

Indeed Beth, sorry if I gave the wrong impression. Just get a bit cranky from time to time. I've zero signs of a cough etc ATM. As others have pointed out its more about learning to accept the risks whilst hoping it may help your Crohns.
Humira for me appears to have kept the strictures @ bay but hasn't totally helped with the Crohns.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[Kazters]

sorry i was going by what i have read and what i was told by both my IBD nurse and also my consultant ;(

 

[crohnicaly stinky]

My doc told me people can be carriers of TB and not have the disease. But there have been cases where carriers started on Humira and that's when they got TB. That is why they screen you before giving it to you, to see if you are carrying.

So from what I was told, taking it doesn't risk you catching it per say. although it lowers thew immune system so catching anything is more likely.

 

[LadyVik]

I've been on Humira since jan 10, and it's ok, had ups and downs. I was hospitalized sometime in the summer of 2010 (like to forget specifics =] ) and ended up getting put in an infections ward due to lack of space, I didn't ask specifics of what everyone had, but my consultant went nuts as obv on Humira, lowered immune system and all makes it easier to catch those nasty bugs, well I came out fine, with no infection but got moved to another ward due to more lack of space and shock horror got put some where where someone had TB, well my consultant got even more angrier as expected and I got moved again, but I didn't catch anything, and I had been taking Humira weekly then for a good few months with Methotrexate as well at the time (Not anymore =] ) So even if you are exposed, it doesn't necessarily mean you will catch it, more of a luck of the draw sort of thing. I just try not to worry, and have a 3 monthly blood test, or more frequently if I feel like I have a cough or cold that lasts awhile, or any other type of infection (bladder, womb, eye etc..)

 

[aumtb]

As stated above, you don't really catch TB from the crohn's therapy. You would get infected from poor medical practice or close contact with some person or maybe food.

You would most likely have turned positive some the exposure despite your illness. Even with the BCG you can easily catch TB. Oddly the BCG should have helped prevent Crohn's in some people.

I'd have also thought that Remicade would have been the preferred choice.