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Type: Posts; User: Twice

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  1. Replies
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    Oh, great. Thanks, Sangye, that's just what I...

    Oh, great. Thanks, Sangye, that's just what I was looking for. x
  2. Replies
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    Hi again. I'm clearly an unreliable and...

    Hi again. I'm clearly an unreliable and occasional poster and use this resource mercilessly to vent my frustrations. I hope you'll forgive me for that.

    My Achilles issues turned out to be quite...
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    Thanks guys. Definitely something to mention,...

    Thanks guys. Definitely something to mention, but it sounds like it could just be part of the ongoing mush. *sigh*
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    Achilles tendons/pred

    Sorry if this should be in the predthred, but it's quite a specific one.

    It's one of the pred side effects I've not come across, but recently (a high dose spree, reducing at the moment through...
  5. Thread: Cellcept

    by Twice
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    2,469

    I've been on and off Cellcept. I really like it...

    I've been on and off Cellcept. I really like it in terms of the lack of side effects and have found it very effective as a control drug. In the past I have been on long term maintenance of just...
  6. Lip haematoma (or hematoma, depending on your inclination!)

    I was just wondering whether a particular symptom might be one of the zillions of maybe-wg things out there. I've not had this historically, but over the last couple of years I do tend to get...
  7. Eeek! If you don't know, Phil, it's probably best...

    Eeek! If you don't know, Phil, it's probably best to leave it that way!
  8. I've just woken up after a horrid restless night,...

    I've just woken up after a horrid restless night, but I have to admit that I made a basic schoolgirl error. After tossing and turning and spinning and whorling for a few hours I ended up watching a...
  9. Thread: Pred question

    by Twice
    Replies
    44
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    8,754

    I've always been weirded out by the hand cramps. ...

    I've always been weirded out by the hand cramps. Sometimes it's just my index finger sort of "flipping" underneath the next digit. Not painful, but definitely cramping. Sometimes my whole hand...
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    I had PCP last year and it's really vile. I was...

    I had PCP last year and it's really vile. I was told that it was commonly known in the HIV community as the "great finisher". I became intollerent to Septrin towards the end of my 21 day treatment...
  11. Thread: Hello again

    by Twice
    Replies
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    2,226

    Hi Sangye! Hope you're doing a b it better than...

    Hi Sangye! Hope you're doing a b it better than last time I was around.

    Al, yeah, ANCA has always been a bit hit and miss with me. I've had positive cANCA, pANCA, negative everything when I'm at...
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    Hi Tobey, I took Aza for about 11 years in...

    Hi Tobey,

    I took Aza for about 11 years in doses from 200 down to 75mg (for most of that time as a maintenance drug). I thought it was great, and it did work extremely well fo me during that...
  13. Thread: Hello again

    by Twice
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    14
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    2,226

    Hello again

    Hi there,

    I haven't been here for ages, so hello again. I've been diagnosed since 1977 when I was 9, and have had some really good times and some quite tough times.

    Last couple of years have...
  14. Thread: swine flu

    by Twice
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    6,802

    Hi, I've had a rough week, but here in the UK...

    Hi,

    I've had a rough week, but here in the UK have had the full 'swine flu treatment' and I'm now smiling again. Just.

    The Rognon - Swine 'Flu
  15. Thread: swine flu

    by Twice
    Replies
    23
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    6,802

    I've had a difficult 24 hours with aching,...

    I've had a difficult 24 hours with aching, temperature 39/102, fever, sweats and cough. I was really worried first thing this morning and the doctor arranged some Tamiflu for me (although I haven't...
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    Oops! Thanks Andrew.

    Oops! Thanks Andrew.
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    This lady ...

    This lady seems to have done well. Jack, I think the early survivors were in the mid-late 60s.
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    That must really suck! That's the longest...

    That must really suck!

    That's the longest I've come accross, although I remember reading somewhere about someone being in remission for 40 years. I might have imagined it, though. I've never...
  19. Thread: Flu Shot

    by Twice
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    4
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    2,883

    I suppose it depends which flu shot you had. When...

    I suppose it depends which flu shot you had. When I was gowing up I wasn't allowed any 'live' vaccinations, including Polio, BCG or flu jabs. However, nowadays the flu jab tends not to be a live...
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    Hi Erika, You might find this list...

    Hi Erika,

    You might find this list useful.

    Sx
  21. Thread: relapse meds

    by Twice
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    8,745

    I tried coming off everything in my late teens...

    I tried coming off everything in my late teens but it didn't work. After I was back in remission I stayed on Immuran and Pred for about 10 years without any significant illness before it flared up...
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    Hi Jack, Like you I have some difficulty...

    Hi Jack,

    Like you I have some difficulty walking due to arthritis and I get Direct Payments from social services which is aimed at keeping me in full time work. This allows me to buy my own...
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    Yes, the foul smellingness is horrid, and I think...

    Yes, the foul smellingness is horrid, and I think like Carol says. Eurch!

    And as for Gold Digging, yes, it can be a great sport. I remember that the movie Total Recall was out during a bad time...
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    Yes, (usual 'I am not a doctor' warning) it does...

    Yes, (usual 'I am not a doctor' warning) it does sound very quick. It took me years to get from 60 mg down to 10mg and years more to get from 7.5 to 5mg. Coming off pred is not nice at the best of...
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    I've learned to be patient, nod smilingly and...

    I've learned to be patient, nod smilingly and give encouraging noises when people tell me about the miracle cures they have discovered. So often, as mentioned above, they go contrary to everything...
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