The 'fun' continues. We have moved house, it's great, wonderful, couldn't be more chuffed!
Prior to moving I was told that my CCG would not provide me with enough Humira to tide me over the period of awaiting an appointment with new rheumy / new application for the drug. Well, this area has notoriously busy GPs but they duly requested an urgent rheumy appointment at the local hospital & that has now come through for 4th October. Again, not too bad .... I've got one Humira injection left and with a bit of luck shouldn't miss more than a dose or two at most. So far, so good.
Then one of the workmen who we've been working alongside in this house on & off for a month or so was diagnosed with TB. I would imagine that this is a dire bit of news for him & his family (who also have the diagnosis). Again the wheels turned pretty efficiently & I was contacted by the TB team nurse and should begin the screening process - chest x-ray & bloodtest, then more tests 6 weeks later - next week or the week after. My husband has early COPD so will probably need the whole caboodle too, to be decided.
It's harder to catch TB than it is to catch a cough or cold & I don't get many of them at all. And although this workman's work was pretty good, I wasn't in the habit of hugging or kissing him. But we were in an enclosed space for some time & he was coughing a lot. I'm not worried, just .... well .... I mean, erm ....
So has anybody on biologics / Mtx knowingly been exposed to TB? Or know anything about it?
It must be very worrying for you but as the TB team nurse contacted you straight away it sounds as if they are pretty organised. As long as you have told them your & your husband's medical details I would think everything is covered .
But I know what you mean.....the Unknown Is scary, but these days I understand TB can be cured so try not to worry too much....I'm sure the TB team will have dealt with all sorts of health situations & will make sure that all your tests are OK before they sign you off.
One of the things they do is screen for TB before you start on RD treatments, so they are very familiar with the procedure. The Public Health team will be VERY keen to test and monitor all contacts of the index case.
Hi Postle, Not sure if this will be helpful to you but here goes.
Before starting on Cimzia I had the routine bloods and chest Xray , I came away from the tests and promptly forgot about them. Then the rheumy nurse phoned me really apologetic to say my bloods showed a TB spot. It floored me.
To cut a long story short, I was referred to the chest clinic , fortunately my spot turned out to be benign. I was prescribed a 3 month course of antibiotics and was able to start on the biologic Cimzia 4 weeks after starting them. {that did not happen but that was down to an admin error not my health}. The chest consultant i saw was very empathetic understanding the pain I was in with the RA , and wanting to treat me quickly, so I could start the Cimzia.They apparently see a lot of patients with RA obviously picked up from the screening test. I have had this TB spot for a number of years without being aware of it,
My daughter who had a very young baby, went into overdrive with worry, we spend a lot of time in each others company. She was told, as I was, to catch TB you would normally have to be living together over a period of time.
I know this is a different experience from the one you are going through. But I wanted to share with you how reassuring the clinic were and how quickly they started treating me.
They were brilliant with my worried daughter, she did not have to be seen or screened as my spot was benign.
hope all goes well for you, let us know.
Thank you all very much AgedCrone (can't believe I'm calling you that without getting a slap but makes me laugh, like your style!), oldtimer, moomie & smithfield. It's just nice to give these concerns an airing & I appreciate your reassurance & advice.
moomie, I'm currently trying to make contact with the GP ... keep missing his calls re. whether or not I can take my Humira and / or Mtx while awaiting screening. Sometimes it's the admin side of things that truly tests my patience. smithfield, I hear what you're saying. It's very reassuring to hear that you were told you have to be living with someone to catch TB although our workman or one of his immediate family must have contracted it from somewhere outside the home. Plus once on biologics susceptability is theoretically higher I think. Glad to hear your spot was benign though. Had you had the BCG vaccination?
To western people of my generation, i.e. older, TB sounds a bit like the plague - lethal & historical. But obviously it's neither. We still don't regret moving one bit!
I'm not on biologics but was exposed to TB fairly recently (someone sitting near me on a long plane trip, actually). The process of getting checked out was fairly straightforward. I think they are quite cautious about the potential for people being exposed, and prefer to test anyone at all who may have been in contact, even if the risk is low. I just had the skin test and didn't actually need an xray.
Yes I think these TB teams are cautious and very proactive. I'm impressed! Many years ago, before the fall of the Berlin Wall, a friend of mine caught TB on a flight back from what was then the USSR. I guess they traced the contact via other cases. She was disabled by the disease. Assuming you're clear, that's good!
I will have to have the x-ray and another blood test 6 weeks later as I'm in a high risk category. Though nurse said people on the drugs I take don't seem to be especially susceptible in her experience. My GP was incredulous about the guy's whole family having TB, especially as they are Brits born & bred & haven't travelled abroad for some time (or so I gather) .... "How?! Why?!" Unfortunately I couldn't help him with that!
Hi i know about it cause 4 years ago it was the only thing that confirmed possitive in me. That test was gamma infernon test but i was on the mend so didnt get the tablets As you know im not to good again and i cant get a further test.
ltb or latent tb can stay in your body for years and not show It is held and cornered by the immune system Then it can start many years later It is spred by someone coffing or spitum And can then enter the lungs. It dosnt have to be lung related it can manifest as bone and joint pain to any part of the body them when it enters the lymphatic system can spread to other areas of the body.
Now here comes the catch 22 IF YOU ARE ON IMMUNE SUPPRESANTS this means you body can not attack the offending infection and could mean that it is easier for it to take hold of you you may have swets at night cold feelings through day aching joints sores on your body if it is external to the lungs.
Thanks for picking up on this minka. Wondering why you can't get a further test .... do you suspect that the TB could have reawakened?
We're clear, as anticipated. All the tests have been done. Although I do have a few aching joints and I do get hot & sweaty or cold very quickly ..... but I think that's the PsA doing its normal stuff.
I'm not scaring u just a bit of advice I'm really really struggling this morning to walk on this knee and ankle and others started today loads of tingling in my feet I'm now really getting worried Al's have sore throat issues and itchy skin doesn't rain but it pours
Sorry to hear you're struggling. When you've been banging your head against a brick wall for a long time it's only natural to feel that nothing's ever going to give. But please persevere and explore all avenues. You have such obvious symptoms (that toe!) that someone somewhere is going to sniff out the cause and hopefully some answers to your woes.
i hope so i realy hope so i still think its some sort of inflamatory like you possibly psa when i look at symptoms been for small walk this morning and i cant sort of get over on that leg properly and the ankle hurts more than the knee And i got a guy who says he will go in their and have a look round see whats wrong nothing showing on mri but it didnt last time and it was gone . Im a bit worried about letting someone in that leg as i dont want it worse than what it is BUT IT LOOKS LIKE IM GOING TO HAVE TO GO THROUGH WITH IT. hOW ARE YOUN WITH YOUR SYMPTOMS CAN YOU DO A LOT OF WALKING.
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Does anyone else get inflamed one minute and not the next!
The vagueness intensifies!
Humira advice please.
Still struggling to find a way to help Hubby manage this disease
