TB screening: morning all! Please help me I’m so... - NRAS

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TB screening

Mybirthday1975 profile image
44 Replies

morning all!

Please help me I’m so worried 😟 I have rheumatoid arthritis I’m currently taking 15 ml of injectable methatexate ,but apparently it’s not enough for my active disease so I’m also going on Hemira.but before I start I needed to have a chest X-ray forTB and it was clear!but I had an appointment with the specialist Nurse a couple of days ago and she said I need to have also blood screening because you can have sleeping TB and biologists can wake it up!so this morning I have woke up to a letter from the chest clinic saying my Rheumatologist Nurse has referred me for TB screening so now I think I have TB!!has anyone else had this happen before starting biologics as I thought the bloods would have been enough!

Please please respond as I’m so worried 😟

Thank you

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Mybirthday1975 profile image
Mybirthday1975
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44 Replies
Karen12 profile image
Karen12

Hi MyBirthday,

Yes, it is normal to check for latent TB before starting a biologic. I was negative but I know a few on here were positive. I believe they just give you a 6 month course of antibiotics with a slight delay in starting the biologic (maybe a few weeks into treatment). I am sure someone who tested positive will be able to clarify for you. Try not to worry they are just being cautious 😊

Mybirthday1975 profile image
Mybirthday1975 in reply to Karen12

Aww thank you so much for replying to me I’m a real worrier 🤦🏽‍♀️but I had the bloods a few days ago and now an appointment at the chest clinic did that happen to you or was your bloods enough? 🥰

Karen12 profile image
Karen12 in reply to Mybirthday1975

No bloods and x-rays were enough, I am not sure if the protocol differs dependent on the hospital. Unfortunately latent TB is more common than you think the nurse told me of the 9 they tested at the same time as me only 2 were negative. It does not mean you are infectious or “have TB” think of it like the chicken pox virus that lays dormant and can become shingles. They just don’t want to risk activating a dormant bug.

65_women profile image
65_women in reply to Karen12

Yes it’s normal for them to do this testing and also for shingles.

why not ask your doctor if you can go on Rituximab for RA I’m on and it ask been good for..

At first they out put me on Humira and I swelled up like a turkey so I had to go to the hospital spend 24 hours in there they brought in a specialist nurse and had to take 10 MG is a prednisone. I was finished the course.. Rituximab works really well for I could hardly walk.

Vonnie69 profile image
Vonnie69 in reply to 65_women

Methetrexate worked fine for me for over 20 years until I got pneumonia. Now being tested fir humara. Anyone ever experience that

helenlw7 profile image
helenlw7

Yes it’s normal so don’t worry. My blood was tested before I started my first biologic, and I’m on my third now. I have regular ct scans, and of course loads of blood tests, some including testing for TB.

AnnieJ123 profile image
AnnieJ123

Try not to worry. It is standard procedure to have both tests, An X-ray and blood tests. Your X-ray shows you do not have TB . The blood test is to show if you have ever had TB in the past, and it is now dormant. It does not usually take too long to have the results. Good luck and I hope biologicals help you. They help me .

Mybirthday1975 profile image
Mybirthday1975 in reply to AnnieJ123

Thanks for replying it mean a lot!can I ask what the chest clinic appointment do? 🥰

AnnieJ123 profile image
AnnieJ123 in reply to Mybirthday1975

The hospital will carry out an X-ray and blood tests and the chest clinic will perhaps check anything . Look at it in a positive way . At least you are getting a thorough MOT check to ensure all is well. If they find anything of concern they will put it right.

Mybirthday1975 profile image
Mybirthday1975 in reply to AnnieJ123

Yeah I see what you mean

Thank you 🥰

Mybirthday1975 profile image
Mybirthday1975 in reply to AnnieJ123

I’m just thinking they have found it in my blood and that’s why they have referred me for further testing at the chest clinic 🤦🏽‍♀️

Mybirthday1975 profile image
Mybirthday1975

thank you for replying I really appreciate it so why do you need CT scans 🥰

AgedCrone profile image
AgedCrone

RELAX YOU 99% DO NOT HAVE TB, …..EVERYONE has to have TB screening to go on the drugs you are about to take.

I had to have the test last year & it came back inconclusive…so I had to have the test repeated..l BUT I WAS NOT WORRIED…..because even if a test comes back positive..a 6 month course of anti-biotics fixes things…& you can go ahead with your treatment.

So in future…either ask your rheumy nurse if you don’t understand anything when you are told about any new treatment you may need, call NRAS, or ask here.

There is a really good chance that somebody here will have an answer for you, …so don’t ever get so worried again..JUST ASK If anything worries you.

We have all asked silly questions at some time….so don’t ever hesitate🤔.

Good Luck with the Humira!

Mybirthday1975 profile image
Mybirthday1975 in reply to AgedCrone

thank you for you reply I really appreciate it!

But I’m worried because I’ve had the chest X-ray and that’s clear..had bloods done for it 3 days ago then woke up to a letter this morning saying your specialist Nure has referred you to the chest clinic!and now I’m thinking why hasn’t the bloods been enough 🤦🏽‍♀️

AgedCrone profile image
AgedCrone in reply to Mybirthday1975

Well….it maybe because the TB blood test was not included in the regular blood tests you had. It takes 2or 3 days to develop,& it has to be done at a specialist laboratory.

Or it maybe whatever blood test you had already came back…& like mine ….it was inconclusive…so it needs repeating.

. But as I said, even if it came back Positive, you will possibly only have to have antibiotics for a while…then they test you periodically & as soon as you get a negative result..it will be all systems go.

But you are at the beginning of a very long RA long journey. & if you upset yourself like this, every time you are told you need a test you don’t understand, you’re going to make things very difficult for yourself.…..so try to understand you could get a lot of letters you don’t understand …..we have all had them…..but once you have spoken to your nurse or asked the question here, things will become clear.

So take things calmly…& as I said…..even if your test was Positive, this next appointment will possibly be to give you the antibiotics.In future, as soon as you get a better phone up and ask, don’t just stress about it.

Good Luck …whatever they want to give you….it will be what you need to progress your treatment ….and with RA if you want to lead a comfortable life…you just need to take what your Rheumatologist recommends!

Lolabridge profile image
Lolabridge

Please don't worry it's absolutely standard procedure to have an X-ray and a blood test for TB before you can start on a biologic medication for RA.

Mybirthday1975 profile image
Mybirthday1975 in reply to Lolabridge

Thank you for replying to me!the only thing I’m worried about is that the appointment at the chest clinic I only had my bloods do for it with the specialist Nurse 3 days ago and the chest X-ray was clear so just wondering why I have the new appointment !did this happen to you ?🥰

Lolabridge profile image
Lolabridge in reply to Mybirthday1975

I was sent for a check up at the chest clinic to see if the reaction I had to MTX had caused any problems.

Amnesiac3637 profile image
Amnesiac3637

You’re panicking unnecessarily so you need to stop because it just raises your stress levels and with RA that’s not a good idea.

What is the worst that could happen? You test positive for latent TB, are given anti-biotics and you resume your treatment. TB is not cancer, it’s not a death sentence and is wholly curable even if you should have it which sounds unlikely as your chest x-ray is clear.

We’ve all been through this particular mill, it’s part and parcel of having an autoimmune disease that causes havoc to start with both physically and definitely mentally which is what it’s doing to you. All the responses to your post have been well informed and reassuring so calm down and breathe……😀

Be glad you have good medics who are on the ball, keeping an eye on you and will sort you out if necessary. All the very best to you, let us know the outcome of your tests and whatever they may be there’s always support on here for you.

Mybirthday1975 profile image
Mybirthday1975 in reply to Amnesiac3637

Aww thank you so much for your reassurance it means a lot!I was just confused due to my chest X-ray clear then I had blood screening 3days ago then got a letter for an appointment on the 19th of this month so I’ve assumed something has shown up in the bloods and that’s why my Rheumatoid Nurse has now referred me to the chest clinic 🤦🏽‍♀️

Stills profile image
Stills

note my diagnosis is Stills disease which manifests as rheumatoid arthritis. Diagnosed aged 17 now 62 and not on biologics. Due to swollen cartilage growth over my ribs that are painful and palpable I’ve had numerous tests for TB all negative, it had been a standard procedure for me due the rib and chest pain and simply a precaution. Try not to worry as it will make you ill.

Mybirthday1975 profile image
Mybirthday1975 in reply to Stills

Thank you so much for replying 👍

Munro76 profile image
Munro76

Keep calm. Its all normal. I had the xray done and also bloods for TB. The bloods were a bit of a pain, I had to get them done 3 times as the first two tests weren't conclusive. I think this is quite common. On another note, Adalimumab was a game changer for me. Hope it works for you! Just keep calm and have faith things will get better.

012703060610 profile image
012703060610

Honestly, now I'm worried. I never got a Xray before shifting to Humira. I have some weird autoimmune diseases getting it insurance approved was rough. For what it's worth, the transition from MTX to Humira has been incredible. I am feeling close to adjusted. The side effects of MTX were too much for me. The Humira has mostly cleared my autoimmune/rheumatoid conditions. I have something called relapsing polychondritis, so it doesn't really go into remission. However, huge pain reduction during a flare. Wish you the best!

Jackie1947 profile image
Jackie1947

First of all take a deep breath. Chest x-rays are not uncommon before going onto biological meds. Sleeping TB no such term. Latent TB yes. This means you became infected at some time in your life. It's not an ordinary blood test but special. You haven't got TB as you'd know it for sure as you'd be feeling really unwell. In my area this is a routine test . I knew before I was tested that as a 4 year old I did come into contact with TB and I am now 77. It's never caused a single problem and I've been on Benipali for years now. I don't even catch colds. Stop stressing as it's not good for the RA

Mybirthday1975 profile image
Mybirthday1975 in reply to Jackie1947

Morning!thank you for replying I really appreciate it!I’ve had the X-ray all clear for active TB but I had blood done a few days ago with the specialist Nurse don’t know what bloods there were but it’s all things that need to be done before starting biologics!but what worries me is yesterday an appointment has come to go to the chest clinic at the hospital so I’m thinking the bloods have come back abnormal..st he specialist Nurse mentioned about latent TB when I saw her and she said we need to check for it!I always worry about everything!and your right it’s no good for RA my joints are killing me and it’s very active 🤦🏽‍♀️

Jackie1947 profile image
Jackie1947 in reply to Mybirthday1975

I can understand your anxiety and these medical terms can be alarming but don't over think it. Going back doesn't mean you have Latent TB. Going on biologicals everyone gets tested it's routine and going back is not unusual. You're going to make yourself ill. Can you contact your rhuemy dept.? We have a helpline. Put your anxieties to them and ask for clarification.

Mybirthday1975 profile image
Mybirthday1975 in reply to Jackie1947

Aww thank you and yes I’m going to stop worrying 🤦🏽‍♀️my appointment isn’t that long away so I will keep you updated!

Thanks again x

Jackie1947 profile image
Jackie1947 in reply to Mybirthday1975

You're welcome. Take care

jojoishere profile image
jojoishere

Morning, my birthday My bloods forTB came back positive last year, I was so worried, I was starting Imraldi (Adalimumab) I was so worried like you, i was sent to a TB clinic, and found to have latent TB (sleeping TB) cut a long story short

I had a 3 month course of two strong antibiotics, after 3 weeks of starting them I was allowed to start my biologic, you are given a choice a 3 month course of 2 antibiotics. Or a 6 month course of 3 antibiotics.

Unfortunately for me they made my liver poorly, and i had to stop everything, but I got to 10 weeks of the treatment.

You will probably be fine on them, so don't worry, if you want to inbox me for any more advice, or help,feel free. They have specialist nurses at the clinic, like at rheumatology. They give you a number to ring them direct if you have any problems, hope this settles you best wishes xx

Mybirthday1975 profile image
Mybirthday1975 in reply to jojoishere

Hi thank you for replying how do I inbox you? 🤦🏽‍♀️that would be great 👍

jojoishere profile image
jojoishere in reply to Mybirthday1975

I think you go to bottom of the page where it says chat 🤔

Seatgeorge profile image
Seatgeorge

I went through all the tests for TB etc, they took 10 blood vials for testing,don't worry if they find something better to be safe than sorry, I expect it will all be fine try not to stress out quickest way to get an RA flare, good luck.

SueBaker profile image
SueBaker

It’s absolutely normal. Please don’t worry about it. Just get it done so you can have the biological and sort out that RA pain

Otto11 profile image
Otto11

Hi Im sorry you’re steering & totally understandable if they hadn’t discussed this with you. As others have said it’s normal practice to have chest X Ray & bloods for latent TB prior to starting Biologics as they can reactivate it. I tested positive for latent TB & had to delay starting Etanercept my first Biologic back in 2003. I was under Proff Emery who was the main person involved setting up & starting criteria for Biologics. I was prescribed 3 antibiotics for 6 months. After 4 months without meds my arthritis was pretty bad & the Proff said I couldn’t wait any longer & stopped them saying I didn’t have TB & he had made the guidelines anyway so could change them in my case. I asked why I may have tested positive. He said I had possibly been vaccinated twice so had made a lot of antibodies. I had been vaccinated twice. Once at school & again prior to starting my nurse training. That was 21 years ago & no further problems. I know it’s worrying but I hope my post has reassured you. Let us know how you get on x

jonsib profile image
jonsib

Good morning, i have gone through the same thing recently when i was supposed to start a biologic. I had an xray which came back clear (latent TB does not show up on xrays apparently), and bloods which showed that i had latent TB. I like you, started to panic, but the consultant reasurred me everything would be ok. I had a 3 month course of two antibiotics and a vitamin tablet to help with the side effects. My experience wasn't completely positive as i had some nausea and sickness, but most of that was to do with the fact that i couldn't take paracetamol on the drugs they prescribed me & gave me codeine instead which always gives me nausea. When i switched to ibuprofen for pain things were much better. I finished the course a few months ago and no issues since then. Hope all works out ok for you.

Jackie1947 profile image
Jackie1947

If you've been infected with TB and not even aware of it(latent tb) there is most likely a marker on the lungs. I knew I had LTB couldn't tolerate the 2 antibiotics with one causing mental problems. So I've not had it eradicated and on Benipali the best for LTB . I've reached 77 years and was infected ages 4 and never had any chest problems and not even ill.

Mybirthday1975 profile image
Mybirthday1975 in reply to Jackie1947

Also two years ago after being diagnosed with RA I had to have a chest X-ray before starting Metratrexate and apparently they found a growth in my chest I was sent to a chest specialist/professor and he sent me for all kinds of tests CT scans of the Thorax also MRI scans pet scans etc..it turns out I have a 4cm cyst deep in my chest at the back of my food pipe apparently I was born with it and didn’t know but they are happy to leave it as it’s non active!the reason I’ve mentioned that is surly active or latent TB would have shown up on them scans they looked at my full lung field!!🤦🏽‍♀️

Mozza61 profile image
Mozza61

Hi, yes I had same test before I went onto biologics,, I was found to have none active TB and given 6 months of antibiotics. It's not an issue or anything to worry about many people have what's known as dormant TB and never know about it.. so please dont worry I've been on biologics now for 2 years and it's changed my lifeMaureen x

Mybirthday1975 profile image
Mybirthday1975 in reply to Mozza61

thank you for replying!can I ask when you went on the antibiotics did you have to stop other drugs I have Rheumatoid arthritis and I’m also on Metratrexate injections so I’m wondering if that would be also put on hold ? 😟

lovetogarden profile image
lovetogarden

It’s been a long time since I started in Humira, but I seem to recall having an xray to,check this.

Peptink profile image
Peptink

I’m not sure where you live, but here in the U.S. you are given a PPD test. You have the test done and then 2-3 days later, you go back and have them read the test. Look it up. It was simple for me to have done.

jackNruby2 profile image
jackNruby2

Hi I had latent TB that was discovered during tests for Benepali It was just a course of antibiotics and that stopped it from ever developing so please try not to worry

Rusticgarden profile image
Rusticgarden

Standard procedure to screen for tb, HIV, chicken pox etc with bloods and normal to do chest xray

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