Mixed news from Chest clinic today ...

Wonkylegs
Wonkylegs Member Posts: 3,504
edited 12. Jun 2010, 15:06 in Living with Arthritis archive
well ...... thanks for all the support today! I'm glad I had you lot in my pocket today :wink: cos you helped me to stay positive when I didn't really feel it :roll:

The good news is that they were only able to register a small reaction to my Mantoux test for latent TB which was measured at 6mm. This is apparently within the 'allowed' reaction for someone who has had a previous BCG injection. :D Relief all round at that point!!

The not so good news is that the 6mm refers to people who are 'normally healthy' and have a good immune system. I, of course, not only have an auto-immune disease (RA) that means mine is not classed as fully functioning :roll: but I also take MTX, which means that they can not be certain with this test that I am completely free of latent TB. :shock: :x :x

SO, add in the fact that I may, 34 years ago, have been in contact with someone who had TB, and it appears that further tests may be necessary.

The chest clinic tried to find out the results of my chest x-ray from 20th May, but the results have not yet been put on the computer system :shock: :shock: :shock: so they are going to write to my consultant and suggest that they do a further special blood test which he would have to authorise cos it costs a lot :roll:

SO ...... I may yet have to have either 3 or 6 month course of treatment to clear me of latent TB ...... this may be before or at the same time as the anti-tnf treatment ....... but again this is in the hands of the consultant.

Let's hope imminent retirement has put him in a good mood and that this gets sorted sooner rather than later :wink:

wonky xx

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hmmmm, a real curate's egg of an appointment. Re your chest Xray results - why don't they just find them? It would save time and money - honestly, done on 20.5.10 and not on the computer 3 weeks later: what do these people do all day? Oh wonkylegs, I am so sorry that nothing has been resolved, you must feel a little frustrated. I'm glad you coped with the tests OK tho - they are not pleasant and can be quite tiring on the lungs! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Re your chest Xray results - why don't they just find them? It would save time and money - honestly, done on 20.5.10 and not on the computer 3 weeks later: what do these people do all day?

    my thoughts exactly, though I have to admit that the x-ray was done in a different (local) hospital rather than the big one I was at today, but even so .... :roll:

    Fortunately for me the only test I had was the Mantoux test, (injection of TB under the skin) so no breathing tests thankfully, but I appreciate your thoughtfulness. :)

    just another waiting game, but also a bit worried that they will want to clear one treatment before they begin the other to avoid wondering about which drug gives any side effects. Also don't fancy 3 months of antibiotics if it means 3 months without MTX (and maybe leflunomide stopped too!) :? :? :? though the TB nurse thought it unlikely that I'd have the MTX stopped, in my experience that is what usually happens when I'm given Antibiotics. :roll: :roll: :roll:

    we'll have to wait and see ......... but I'm not a patient patient :lol::lol::lol:
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi,
    I had such a small reaction from my test when I went to work at the hospital that Occupational Health, retested me, and then wanted to reimunize me. In the department I was working in, one of our Regs looked at it, he had the same problems himself and said I must refuse any injection as although only a very minor reaction, it was a reation and another vaccination would carry risks!!! So thats what I did!

    Sorry, this isn't really relivent to you, but hopefully soon they will be able to see an x-ray and give you an expensive, (which shouldn't matter, but thats a whole new can of worms,) blood test and you will be fine. I know waiting is horrible, its a good job I never had a baby, or it may have driven me mad to wait 9 months!!! :lol:

    Love Sue
  • frogmorton
    frogmorton Member Posts: 29,881
    edited 30. Nov -1, 00:00
    Hi Wonky

    Wow!! that is well-complicated isnt it? :shock:

    I do hope the DR is in a good mood and wants to get you sorted before retirement eh? Taht would be good for you.

    Latent TB?? that is scary - I bet you are worried - I know I would be :(

    Hoping you get somewhere very soon with all this? When do you next see someone?

    Love

    Toni xx ( Oh - do I get out of your pocket now? - if so can you remove the fluffy boiled sweetie from my head? Ta! :wink: )
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Hi Wonky

    Sorry to hear you didnt come away with anything
    positive much.

    I had hoped to hear you would be well on your way
    nearer to the anti-tnf treatment.

    Hope they get things moving for you very soon,
    its a long time to wait for a chest x-ray and should not
    be so.

    Take care
    Love kath x
  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -1, 00:00
    Hi Wonky sorry about your tests, I do hope you get it sorted soon and are able to start your Anti-tnf. ((((hugs)))) to you.

    JUlie xx
    ((((hugs)))) n xxxxx to ya all
  • trisher
    trisher Member Posts: 9,263
    edited 30. Nov -1, 00:00
    Hi Wonky

    I'm so sorry about your visit to the hospital. I wish it had been better for you.

    I still have that rope tied around your waist, jus give a tug when you need to.

    I know it is not nice as you really want to know what is what.

    When they do the x rays the result goes on computer within 24 hours. What it might mean is a specially trained person has to really look at the xrays before they give a report.

    I hope that you don't have to stop your meds as you have been so much better lately.

    We are all here for you though, remember the words you said to me last week, try to stay positive, well lets do it together.

    Sending a basket of ((((((())))))) to you

    Love Trish xxxxxxxx
  • angel1
    angel1 Bots Posts: 1,464
    edited 30. Nov -1, 00:00
    What a stressful day you`ve had Wonks. So frustrating, and annoying that your previous results were not to hand.

    That apart though, I have to say that I felt pleased they were making so much effort to do what`s best for you, and not looking for the quick solution today.

    Patience my love, you`ll get there........Much love......Ange.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Dear Sue, Toni, kath, Julie, Trisher & Ange,

    thanks so much for taking the time to reply :D

    I must admit that whilst I am a bit fed up that the result of the chest x-ray wasn't available, otherwise I couldn't fault the staff or the info I was given.

    Sue I loved your take on the problems of waiting :lol::lol::lol::lol:

    Toni - Latent TB?? that is scary - I bet you are worried - I know I would be Sad actually that is not the scary bit ..... there are different types of TB and this isn't the scary one.
    I was told today that if they took 10 people in off the street about 3 would test positive for Latent TB - it is usually 'dormant' in people, doesn't mean they are ill (or going to become ill) & isn't infectious, and in fact is not usually a problem to people unless it is 'woken up' by something. Apparently the Anti-tnf drugs can 'wake up' latent TB so they treat it first rather than giving it chance to wake up....... sensible really :wink:

    As to when I next see someone ....... :? :? :? not sure!! I have an August appointment for the rheumatology hurse in my diary, but the letter I got said February next year :shock: , although I do have a consultant appointment in September ..... presumably with the new person.

    Kath - I think I'm half a step nearer :wink: better than going back a step :wink:

    Julie - thanks for the hugs :D

    Trisher -
    When they do the x rays the result goes on computer within 24 hours. What it might mean is a specially trained person has to really look at the xrays before they give a report.

    you may well be right, but unfortunately round here they work on old technology, and all I can say is that an 'urgent' x-ray my GP requested did not have the results available for 2 weeks :roll: so nothing surprises me I'm afraid.

    I'm keeping hold of the rope - as long as you have hold of your end too ..... I like the mutual aid idea :wink:

    Ange - as I said above, I couldn't fault their care today .... loads of explanations, and plenty of time to ask questions. I don't want to rush into anything and would rather things be right first ....... and I do see that getting this right is really important.

    thank you all ..... you are a great support.

    hugs to you all
    Wonky xxx
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Wonky, nothing is straightforward is it?? What a nuisance. All this delay is frustrating. If the little local hospital could find the x-ray results would that be enough for them to decide the next course of action? Does the additional expensive blood tests give more info? Could they not just send them via your good self to the big hospital?

    The sooner they sort out the treatment ...the sooner they can put them on the arther meds you need.

    I hope they get this sorted out for you VERY soon.

    Speedy
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    speedalong wrote:
    Hi Wonky, nothing is straightforward is it?? What a nuisance. All this delay is frustrating. If the little local hospital could find the x-ray results would that be enough for them to decide the next course of action? Does the additional expensive blood tests give more info? Could they not just send them via your good self to the big hospital?

    The sooner they sort out the treatment ...the sooner they can put them on the arther meds you need.

    I hope they get this sorted out for you VERY soon.

    Speedy

    Thanks Speedy

    I don't know what the answer is ...... apart from the fact that the x-ray would have possibly given more info but not the whole story .......... but the system is a mystery to me as far as x-ray s go. The ones I had of my hands and feet 8 years ago never materialised .... or that is I kept asking and asking about the results till someone (rheumy nurse I think) told me that ' they probably didn't bother to develop them' :shock: :shock: :shock:

    When Hubby had some important tests about 2 years ago in June, we went to see the neurologist for the results in the August, only to discover that the results were not in his notes. The doc was so cross he rang the dept who did the tests, and they said that they were only just typing the reports from May :shock: :shock: :shock: :shock: :shock: :shock: the consultant was furious that he could not put our minds at rest, and so were we that his time had been wasted. Fortunately he was able to write to us and let us know that we needn't worry, otherwise we'd have had to wait another 3 months to find out!

    hugs
    Wonky xxxx
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Wonky - just caught up with your post. Sorry not all as straightforward as you hoped it might be. But at least by the time you get those anti-tnfs you will know that you can take them safely.
    Love Tilly x
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Wonky,

    I am way behind here s sorry :oops:

    I do hope the gp can put a bit of weight on this and they hurry up and you can start the anti's soon. ((( ))) slurps and hopes Cris xx