I have just returned from RA appointment with my new specialist and am feeling really unsure. I have tested positive for latent tuberculosis so he seems reluctant to start me on Biologics, which was the route my old rheumatologist was planning to take.
I think I received a BCG vaccine when I was a child in Ireland. Could this be the reason I have latent TB?
I have been on MTX 20mg for a couple of years and am actually OK, so he has said to reduce this to 15mg as a maintenance dose instead of changing to biologics. 🤷♀️
I am in Spain so things a little different here but I don't know what to think of this.
Any advice or sharing of experiences very welcome.
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Manzana1
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There are a few on here who have tested positive and had treatment before biologics so hopefully some will be along soon. I wouldn’t think it’s because you had a vaccine as I had it too ( as would many others) but haven’t tested positive. Has your rheumy offered you treatment?
I also tested positive for latent tb. I had to have a combination of 2 antibiotics for 6 months but at the end of that I was started on abatacept biologic. This was more than 10 years ago and the biologic has been very successful. Unfortunately I have several other health problems but the RD seems to be reasonably well controlled. By the way I didn’t have the BCG vaccination but I don’t remember that being mentioned in connection with the latent TB.
Your outcome is so reassuring, thanks for sharing as I', m about to go on a Latent TB treatment, followed by an immunosuppressant. My rheumatologist is so vague and don't have the ability to provide any levels of reassurance unfortunately
it is highly unlikely the vaccine caused the latent TB. Although being immunosuppressed makes it easier to get such infections. The usual path is for long term antibiotics for approx 6 months, following which you can then start biologics if needed. It may be different in Spain, here in the U.K. the rheumatologist normally prescribes the antibiotics. It is unlikely they will add anything which will further suppress your immune system, whilst you have latent tb and is probably behind the decision to reduce your MTX. Take care, but chase your team re treatment. 🤗
As a matter of interest, can you get a Biologic on the Seguridad social system there in Spain? I was diagnosed with RA while I was living in Spain 16 years ago, but back here in the UK I have been on Etanercept Benepali for four years. This is the only reason I am staying in the UK; in order to stay on my biologic.
I know that TB is a big no-no for being put on a biologic. You would have to have treatment for your latent TB, and the thing with biologics is they make you very prone to infection so you have to be very careful. Good luck with it. My biologic has changed my life.
Hi and thank you for sharing. I only know that when I saw a specialist in Madrid some years ago and he first mentioned biologics, he took great measures to point out the cost of them. Now in Costa Blanca and they're not falling over backwards to start me on biologics, Truth is I'm not in pain. I'm vegan and exercise regularly, love walking.
A couple of things have showed up on my last blood test that I don't understand at all and this is where all this has come from. Trouble is, here it's not usual to ask questions, but to just accept that they know best. My partner is Spanish and he does this but not me. Last Rheumy wrote a comment on my notes that I am 'very suspicious of treatment' because I dared to ask questions. I'll swap with you. You come here and I'll go to UK
I had the BCG inoculation and went to the US to work. They tested me with the Heaf test (pricks in arm) and of course I came up antibody positive. They insisted that I had TB (my chest X-ray came back clear) and prescribed medication which I didn't take.
Hi Manzana1I would suggest that you see your doctor and seek treatment in the form of antibiotics to treat the latent TB. And you should question the doctors when they are treating you as they shouldn't be secretive. Good Luck! I hope you find answers to your query from others in this group.
Hola Manzana, I am on MTX since 2009. Started with 25mg and gradually reduced to 10mg. Most of the time taken by injection. This reduced side effects drastically.If your RA is well controlled with just MTX you might not need a biologic.
I too tested positive for latent tb about a year ago before starting biologics.my rheumy asked advice from tb specialist at royal free,who did not seem overly concerned,and said I must have had tb as a child with no symptoms.He said it was ok to go ahead with biologics without any treatment first,which I did.I was then on Benepali for 9 months,with no problems ,it just did not work for me,and am now on JAK inhibitors,also with no side effects.Now,it may be that I am nearly 80 ,and have never knowingly had any lung problems all my life,that he weighed up risks and benefits,and decided to go ahead.I know it is usual for a course of treatment first,as others here have said,so just saying my experience with this diagnosis.Good luck,keep us posted.
Interesting. Thank you for sharing. Do you know if you had a BCG vaccination when you were a baby. I have found my records and it seems I wasn't vaccinated against it.
I did have BCG jabs when a baby as I was adopted and it was on my adoption papers,so have seen it.I worked in the office in London Docks for many years and was in environment where there was a lot of asbestos,so Royal Free specialist thinks the scarring may be due to tb picked up while on board ships in dock etc,or mixing with people who lived in all the prefabs .I had never been in hospital until I had a new knee 6 years ago,and have never had chest problems in my life,so a bit of a mystery.My dad always had a bad chest and asthma,so could have caught it from him.I am not bothered about it as 79 this year and keep well apart from RA in hands and feet.Very lucky really!
Yes, you are very lucky. I was only 20 when I was diagnosed , now 55 and feel that a positive attitude, exercise and being first vegetarian, then vegan have helped me a lot. But the RA specialist I saw the other day made me feel so depressed, he was so negative.
I grew up next to an Asbestos factory in my hometown in Ireland, was told I had some scarring on my lungs some years ago but that specialist wasn't concerned. The curious thing is that about 10 years ago when I was still in London, I had a very bad productive cough which antibiotics just wouldn't clear, I suffered for 3 years with it, then finally was given an antibiotic (here in Spain) to take for 4 days and that was the end of it. Never came back.
hi, I was on 15mg for 2years and have reduced to 12.5 all you can do is try it and see if it controls flares . Good luck 🤞
Before give Benepali I was given a chest x-ray and was tested for latent TB. Fortunately I was negative and the Benpali I have been on since Xmas together with Sulfasalazine has been very successful. My consultant said if I was found positive for latent TB, I would need a course of antibiotics first, for around six months. I found Methotrexate and Lefluomide in the past affected my stomach and difficult to tolerate. They were not successful for me, possibly as I had SIBO badly which flairs from time to time. I am slowly reducing the sulfasalazine as instructed. We are all different and hopefully you will find something that works for you. I think our bodies sometimes get used to a medicine and they become less effective .After a period a different medicines might be needed. We need to weigh up the benefits and the side effects and to some extent it is trial and error. Good luck.
There is no medical evidence that the BCG can give you latent TB. Latent TB is due to some point in your life you came into contact with someone that had TB. In my case when I was 4 (now 76) my late Dad had TB I became infected although not ill. In my early days I regularly saw a consultant for checkups ie chest x-rays. This has never impacted on my life. Consequently I didn't need a BCG.My history re RA is that many years ago before Retuxinab I was to have 2 different kinds of antibiotics to clear the latent TB. Didn't bode well as they gave me self harm thoughts and boom taken quickly off them. I still have latent TB although the special blood test says negative ( it's there but too low to register) I'm on Benipali which is one I can have with a much lower risk of reactivating TB. As I couldn't be cleared of LTB by medication it does mean other biological meds are limited
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