Latent TB

[sylvi]

Afternoon all,well after spending the morning down the hospital waiting to see the dr re; TB blood test. I had to wait an hour and a half after my apt. time so i was not best pleased by the wait and i made my feelings known about the wait. So i have been given three months course of antibiotics and the same for vit b or d can't remember which one. So now i am waiting for my rheumy team to contact me about the new drugs. I am so damn fed up with life at the moment,it is just one damn thing after another with me. Sorry for being so down,but thats how i feel at the moment. I know tomorrow is another day. My daughter flies back from her holiday in Malta, so that will be nicexxx

[medway-lady]

Hi Sylvie but they did get to you. Its hard but sometimes our local hospital is more like an episode of MASH and I'm sure you'd remember Hotlips and Radar but to be honest at least we get to see someone and they can only do their best. I wonder if they had to give somone else really bad news and it took time ? For me as well its one thing after another and taking a shedload of meds a day. Unfortunately no cure and its a waiting game, but staying posative as at least not snowing at the moment. My biggest gripe is that one of the meds is making my hair greasy which I hate however it isn't thinning ! LOl

Strange how the big stuff is not as much of a problem Or at least for me as the really trivial. Stay strong and warm and what colour hair now?

[sylvi in reply to medway-lady]

I shall be ok tomorrow just three mre drugs to add to the mix,just tonight i a so exhausted and tearful. I just wonder when i am going to get a break.xxx

[NeonkittyUK in reply to sylvi]

Hugs darling 😍😘xxxx

[medway-lady in reply to sylvi]

I feel the same plus a bit angry as the outlook seems a bit bleak and fed up of being tired. RA is fine its the kidneys, and he big doses of steriod are horrid instead of being normal I've a huge moon face and I have to go 30 miles to Renal hospital its a long trip and I hate that clothes are getting tighter even though they say its fluid and will go I still feel like a lump.These things are sent to try us my mum used to say "what don't kill you makes you stronger" well I wish she was here as could do with the no nonsense your bloody lucky to have such great doctors helping you. Don't always feel like that but today did the Dose it box which took 20 minutes to collate so much to put in. I feel 90 !!xxx

[sylvi in reply to medway-lady]

I was trying to come of the steroids and got told off from the nurse as i am to stay on them until they get the drugs sorted out.xxx

[Mmrr in reply to medway-lady]

I hope you feel a bit more like it tomorrow. It's a fair fecht, this RD.

I'm struggling too, but made a wee bit progress today.

[nomoreheels in reply to medway-lady]

Sending good wishes to you ML.

[Mmrr in reply to medway-lady]

It's the straw that breaks the camels back. The big things we just need to deal with, no choice really. The wee things can seem trivial, but they wear you down.

[sylvi in reply to Mmrr]

I am so down tonight that i will be going up to bed shortly to rest.xxx

[Mmrr in reply to sylvi]

I hope you rest well and manage to get some sleep sylvi. Night night.

[sylvi in reply to Mmrr]

Mmrr i did sleep well thanks to amitryptaline.xxxxx

[Hidden]

Sorry to hear your feeling down, as you know this goes with the territory of RA. I’ve had a stinker of a year from last June and it’s still ongoing. I’ve cried, and been very down so I can empathise with you. We’re all looking for the holy grail to make us “normal” ha!ha! Is that possible! 🙈🙈I’m having a hip replacement in April so that’s one of the many problems ticked off my list. I’m sure your daughter will lift your mood when she gets back! Keep that chin up!! Take care lovely lady 🤗 X

[sylvi in reply to Hidden]

This has been going on for over a year now darling i had hoped with the new year things would improve,just goes to show how wrong you can be,xxx

[NeonkittyUK in reply to sylvi]

I think it still could very much be your year to get sorted .. But you have this blip to conquer first. You can do it. xxxx

[helixhelix]

I was allowed to start my biologic drugs after I'd been on the TB drugs for a few weeks. So hopefully it shouldn't hold you up too much.

Onward and upward....spring is only round the corner..

[Ruth12345]

Im sorry to read this sylvi. Its been a bumber for you. Pleased to hear your daughter home tomorrow. Thinking of you and sending a hug. 🙂🌷

[Hidden]

Ano, lovely lady! me too, But we have to have hope for the future! I’ve almost exhausted the biologic therapy’s and done all the DAMARDS and anti TNFs and I worry where will I go next if I run out of options, but we have to stay strong & positive,Look at your beautiful family💕 👨‍👩‍👧‍👦 they are what keeps you going. 🤗 X

[rab1874]

Sorry things are not great at the moment pet keep the chin up and surely things will turn around big hugs xxx

[Mmrr]

sylvi, so sorry to hear of your plight. Hopefully the antibiotics will sort things out and you get started on your biologics soon. Spring is just round the corner, and a brighter time for you too.

[nomoreheels]

I think you need to look at this as a means to an end Sylvi. Keep your spirits up (no, not whisky!) & I hope you can have a good nights sleep. It's Vitamin B by the way. x

[sylvi in reply to nomoreheels]

Thanks darling,and if i had kept on drinking i might not have been as bad as i am,lol.xxx

[nomoreheels in reply to sylvi]

Ah but you might have added a doozy of a headache to your problems! Hope things aren't feeling quite as bad this morning. Stay put in the warm if you have snow Sylvi. x

[sylvi in reply to nomoreheels]

I am okay nomoreheels it will take some getting used to. Hopefully with the antibiotics in my system i shouldn't get much else should i.xxx

[Hessie5]

Chin up Sylvi its okay to feel fed up, RA brings out all our emotions. You are going to take your mind of things when you see your daughter.. Take care. Hessie

😌

[Soreknees2016]

Sorry you’re still having such a tough time - fingers crossed things will look a little bit brighter in the morning.

[MaryTH]

Oh dear Sylvi, it just isn’t fair is it. You seem to have had it all but you are one very strong lady. Let’s hope things soon start to improve xxx

[sylvi]

Morning all, well i slept well. I am not sure how i feel yet apart from the usual pain in my body. I think i am taking on all your ailments so you don't have to have them,well a girls got to try and laugh hasn't she. Thanks for your support.xx

[Hidden in reply to sylvi]

Great to hear lovely lady! Onwards and upwards as usual!. Don’t go building snowmen ⛄️ ha!ha! We’re with you all the way. 🤗 X

[sylvi in reply to Hidden]

We would have a hard time as thereis no snow here,xx

[Hidden in reply to sylvi]

OMG! how lucky are you! We’re having a blizzard up here in the North East, it’s bloody freezing 🌨🌨⛄️ 🥶 🤗 X

[juneann]

Hello there, Latent TB isn't something that crops up too often fortunately, when were you diagnosed? You have to be careful with meds as it can reactivate but you probably know all this and is not the reason for your post. Keep well.

[sylvi in reply to juneann]

I am on a three month course of antibiotics with vitamin d3 as well. So i am being looked after,but i don't know what i was expecting when i went into the apt. one and half hours later so i was not best pleased due to being in pain with my back. Yes i did have a moan as i felt it was just too long to keep everyone waiting.xxxx

[MandiS in reply to sylvi]

Hi Sylvi sorry to hear about your experience the same happened to me. Are u at NPH my appointment was at 3.30 I got seen at 5.20 I had 3 appointments tested negative for latent TB asked to go on the antibiotics which I was not happy about. Had a second blood test still tested negative and asked if I could start biologicals without the antibiotics. Had the benapali dropped off now waiting for nurse to visit next week. Hope it all goes well for you. My registrar advised that once you have been on the antibiotics for about 5 weeks you can start the biologicals. Good luck 😉

[sylvi in reply to MandiS]

Morning MandiS i was seen at the George Eliot in Nuneaton. The blood test first picked up before Christmas as i had hoped i would have been on tte super duper drugs by now. My RA is all over the place at the moment and it is making me feel pretty unwell. Just another mountain to climb. I will get there with my dh with me he is my suppor system.xxx

[juneann]

When were you diagnosed with TB Sylvia?

[sylvi in reply to juneann]

I had to have a blood tests done for me to go onto biologics,that was when i knew something was up. Yesterday was my first apt. when i got the antibiotics.xxxx

[juneann]

Often pulmonary but depending on where it is, following an x-ray is often the first people know of latent TB. At least it was found as immuno-suppresants can re-activate it.

[sylvi in reply to juneann]

My x-ray was clear Juneann. I was seen yesterday.xx

[juneann in reply to sylvi]

So no TB scarring?

[nomoreheels in reply to juneann]

If it helps, you may know so ignore if you do but it might help someone else. Like anyone else Sylvi needed screening before starting biologics. It revealed she has latent (dormant or inactivated) TB. They look for both active & latent. Biologics are associated with the possibility of latent TB turning active, so as she has latent she is being treated with 2 antibiotics & Vitamin B6 for 3 months, sometimes it's possible to start the biologic before the 3 months is up. The Vitamin B6 is taken because one of the antibiotics can cause peripheral neuropathy. I'm not sure how often it's used or even if it is in treatment prior to starting biologics, but an option is taking just one of the antibiotics for 6 months but of course the aim is to knock it on the head & start biologics sooner rather than later. Some people have the infection without knowing but our immune systems are still good enough to keep TB from developing. In a small number of people it can though & with biologics the immune system is suppressed as you know, this means we can then be open to an increased risk of infections, including TB.

Hope this helps anyone.

[sylvi in reply to nomoreheels]

I am taking the shorer route nomoreheels of two tablets once a day and the b6. i had a choice but i was reluctant to take the long route so opted for the three months.xxx

[nomoreheels in reply to sylvi]

Makes sense. I hope all goes ok. x

[juneann in reply to nomoreheels]

Yep, got the t-shirt.

[nomoreheels in reply to juneann]

Ok, might help someone else.

[Gigi71]

Hi sylvi. Can truly emphasis with you at the moment, my back pain is taken over my life, I had more tests this week to see if any possibility of an op on my back, so far seems RD has caused my spine to be unstable. Thank goodness for a good supportive family. We cope, cause we have to. Take care sylvi hugs ( gentle) X

[EdieB]

He Sylvi. Chin up girl! I’m sorry you are sad and going thru the tortureous whims of the Drs. Yes they are there to help us but sometimes I feel they forget about the “whole “ of us. The emotional part of this disease.

Life can sometimes gives a crappy outlook and you have every right to want a better life, just to be “”normal”.

I feel for you and as I have done on this forum, vent to us. We know exactly what you mean!

[Cheylann]

Sorry to read you may have t b. I am south african and my friend had it over there. Had to take 6 different drugs 3 times a day for 6 months. It was awful and she coughed incessantly so I really hope u don't have it.

Isn't it wrong they keep u waiting so long. Almost as if your time is worth nothing.