TB testing before starting a biologic.

[jojoishere]

Hi everyone, hope your all well as can be.I'm to start a biologic soon, so had my bloods done, (microbiology) bloods for TB has come back positive, I've been referred to a respiratory specialist for further testing.

I'm not doing very well at all at the moment, im in a massive flaire, and currently just on prednisolone, and painkillers, I was took off methotrexate a few months ago due to side effects.

I've been told my biologic will be delayed until I see and investigate the positive TB result. Has anybody ever had a positive tb result ? And what was your outcome? Thanks in advance ☺️

[Jackie1947]

Do you mean the result is full blown TB or Latent TB which means you have been infected at some point with TB but you don't have it . As a child I was infected by my Dad and as I had come into contact with him and wasn't ill I have latent TB. I had to have special blood tests,chest x-ray before I could start biological meds as some could activate the TB. I've had no problems with Benipali but it does limit me trying other ones.

[jojoishere in reply to Jackie1947]

Hi Jackie, Thanks for reply, all they have told me is the blood test is positive, i won't no until I go to see the specialist, but don't no if its active, or latent TB. I'm waiting to go on Adalimumab, but they have delayed it at the moment. Did you have to have any treatment even if its latent? ( like antibiotics) what was your dad's symptoms?

[Jackie1947 in reply to jojoishere]

I'm 76 and I was 4 when my Dad had TB it was rife in those days. He survived and led a full life . No antibiotics in those days. I should think it if was active you'd be quite unwell and they would have started your treatment straight away. If necessary your consultant can start you on two different types of antibiotics to rid the latent TB plus other check ups before starting biologics. Don't worry yourself as there's many people with latent TB and don't know they've got it. I've never had any symptoms.

[helixhelix in reply to jojoishere]

if you have no sumptoms that chances are that it’s latent. And chances are that you will have to have antibiotic treatment to be sure it doen’t flare up. But very common, so don’ fret.

[helixhelix]

i had TB as a child so will always test positive for latent TB. Which is what they usually test for if you do not have symptoms of active disease (persistent cought, nightsweats, evil nightmares etc)

Because I didn’t have my medical notes from that time to know what treatment I had (all I could remember was injections for a year) they insisted that I take the full three month treatment with two antibiotics. Which was not nice! But I started my biologic after just two months.

And have changed biologics since as having had full treatment they aren’t worried now.

I also has chest x -rays and then CT scans of my lungs as I have lots of nodules. But they aren’t changing so they are no longer concerned.

[jojoishere in reply to helixhelix]

Thanks for reply heilxhelix, Glad to no its quiet straight forward, I've had a painful chest and cough for quiet a while. Feels more like breathlessness, cough is dry tho like I've got a frog in my throat, its hard when your in a flaire also because I feel wiped out and fatigued, but not had nightsweats or nitemeres, but can't walk far without feeling exhausted, glad to no your ok now that's a reassurance. Will no more soon

[Jackie1947 in reply to helixhelix]

I was prescribed the two antibiotics for latent TB one of which gave me self harm thoughts.Quickly taken off them so to this day aged 76 it lives with me and has never flared. However I am limited to which biologicals are safe for me without activating it.

[helixhelix in reply to Jackie1947]

Yes, those antibiotics are horrid! I hated the whole 3 months and yes grim thoughts, plus nausea and all the rest.

[Jackie1947 in reply to helixhelix]

Well done on perseverance. I had no other side effects except self harm which came out of the blue. Obviously taken off them.

[jojoishere in reply to Jackie1947]

Oh they sound awful, I already suffer depression, so won't be looking forward to taking them.

[Jackie1947 in reply to jojoishere]

It doesn't happen to everyone see what Dr says

[jojoishere in reply to Jackie1947]

Hi Jackie, hope you don't mind me asking? Can I ask you how long you was on your TB treatment before you had the self harm thoughts??

[Jackie1947 in reply to jojoishere]

Hard to recall now but it took a while

[Otto11]

Hi when I first had screening for Biologics in 2003 I also tested positive for TB. Apparently I had a lot of antibodies so had been in contact with someone with TB at some point. Biologics can reactivate latent TB so they need to check it out. The treatment was triple therapy antibiotics for 6 months prior to starting Biologics. This was a huge blow as at that time I was extremely bad & desperate to start them. I had 4 months of the antibiotics when Proff Emery ( my consultant) who was the Consultant involved with getting Biologics up & running told me that he had made the guidelines so he was breaking them as I needed to be on treatment asap. So I only did 4 months worth. So unfortunately you will face a delay in starting treatment but hopefully all will be well x

[jojoishere in reply to Otto11]

Hi otto, thanks for replyI didn't realise how common it is, I no what you mean about delaying the biologic treatment, I'm worn out with pain, I feel like it's just a part of me now, the steroids are kicking in now but still in pain , was hoping to be feeling better for the summer months, because winter has been so long and draining. Can you remember having any side effects to the treatments you had for your latent TB? X

[Otto11 in reply to jojoishere]

Its 20 years ago so no I don't, not really. That said I must of either complained about side effects or was just so bad pain & inflammation wise they stopped them early. All i remember was the pain was awful & I was counting the days till I could start. I expect you're in the same boat. Remember these guidelines were right at the beginning of Biologics being available & may well have changed in the past 20 years to a shorter course. I will keep my fingers crossed for you.

[Doodlereggie]

hi there

I too had a positive tb blood test before starting Benepali a year ago.my rheumy consulted with specialist at royal free,and he advised it was ok to start biologics and they would monitor.he said I must have had tb as a child as I had some scarring,but I was not aware I had ever had it!anyway had biologics for 9months,with no I’ll effects at all,and no reactivation of tb,it remained dormant as they say.as I am 78 they thought it was worth the risk.

I came off benepali recently,only because it did not work for me,and am now on JAK tablets,which are working.let us know how you get on.

[jojoishere in reply to Doodlereggie]

Hi DoodlereggieWow so yours was active at some stage? But you had no treatment before starting your biologic, it sounds like things are done differently for everyone, what jak tablets are you taking at the moment? Glad there working for you, so your body actually got over the TB naturally, goes to show you how strong our immune systems can be at fighting 💪 disease and infections. I will let you no how I get on and hope your jaks carry on working for you x

[Doodlereggie in reply to jojoishere]

hi there I am on filgotinib one tablet a day,no injections and no side effects.been on them for nearly 6 weeks and they are really helping with pain in hands and wrists.was able to cut the grass and trim the edges yesterday,which was a big advance!Today have got a cold,runny nose and sneezing and am not sure whether to pause meds for couple of days.may phone nurse tomorrow for advice,unless cold has gone by then.the main thing is not to panic and overreact!overall think the JAK2 meds are brilliant.xxRe tb,my dad worked in the docks where there was a lot of asbestos and he always had a bad chest and was diagnosed with asthma later on in life,with hindsight he may have had tb and I got it from him.Will never know for sure!

[Garnacha]

When I was in school, think it was juniors so between 7 & 11 years old, everyone was vaccinated against TB, before the vaccination we were all given a (not sure how to best describe it, but it was like a stamp with about 6 little needles on) if the markings from the stamp stayed raised it meant you had TB antibodies so didn't need the vaccine, mine stayed & was told its probably because my grampy had TB, my mother was the same too but my sister had to have the vaccine. Perhaps you are also showing antibodies. I'm assuming latent TB is because you've either had it or have antibodies for it. I didn't know you have to have antibiotics if you go onto biologics which is possibly my next step so will mention about TB to the consultant when I next see him x

[jojoishere in reply to Garnacha]

Hi Garnacha.I had the 6 needle stamp when I was 12 or 13 i can remember it well, I had my TB jab and someone punched me in the arm after, he got sent to the headmasters office🤣 I got sent to the nurse as it became inflamed. That's the only reason it sticks in my mind. I never thought about that because I've had the jab and would of thought it protected you. I will let you no if I need any treatment as I'm waiting on a biologic x

[Garnacha in reply to jojoishere]

oh no! I remember everyone saying how painful it was. Thinking about it, surely most adults, over a certain age, as I'm sure they've stopped giving the vaccine now as there hadn't been any TB cases for years, (although I'm also sure I heard on the news a few months ago, that TB is becoming prevalent in the London area) would have some TB antibodies so you'd think they would start any possible biologic treatment sooner than later if most adults need to go on antibiotics first 🤷‍♀️x

[Ella61]

Hi

I had a positive result, mine was latent TB, as when I was a child a member of the family had it, not myself though. I had the choice to have a 3 month course of antibiotics, two types, or a 6 month course, only one type. I completed the course, I am still waiting to go in biologics only because I cannot decide if it is the right decision for me, as I have also been tested for latent HB😟

[jojoishere in reply to Ella61]

Hi Ella. Was this recently that you had the antibiotics? Did you have side effects? What is HB? Hope its not to serious x

[rmros]

Hi. My TB mantoux test was positive. It just meant the consultant had to check my chest x-ray and in the end I was given the all-clear.

It's important to remember that when they're doing pre-biologics TB screening, the threshold for a positive test is lower. You're a "category A" patient which means they exercise an abundance of caution.

If you are found to have latent TB then there are treatments they can give you. Hopefully it will just be a similar scenario to mine - it's important to know before starting biologics, but it's rarely anything to worry about so 🤞

[jojoishere in reply to rmros]

That's reassuring to no thankyou rmros 😊