Home Forums General Discussion A quick hello after a long time ))

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  • #467815
    aynurrzepa
    Participant

    Hiya! Just wanted to say hi to everybody and to let know that I’m fine, in fact doing very well! Still )) And still on Mino, 3 times a week 100 mg. Currently having some issues getting it here in the UK, but I hope to get an alternative prescribed soon.

    #467816
    Maz
    Keymaster

    Hi Aynur! So lovely of you to take the time to pop by with an update. It’s so good to hear you are still doing so well and I’m sure that anyone new here with scleroderma will appreciate this update very much. Do hope you manage to figure out your prescription there!

    For anyone interested in reading Aynur’s story, click here:

    Aynur’s Scleroderma Story

    #467817
    Lynne G.SD
    Participant

    Hi Aynur;
    I am trying to figure out how many years it has been since we heard from you.I am still on AP(sort of)I take doxy made by Teva and it works just as well as the old mino.When I say “take” I mean I take it when I remember,maybe a couple tablet a week. ha ha.All in all I have been on AP for near 25 years and am just fine.
    What are you up to these days?
    XXXXX lynne

    #467818
    aynurrzepa
    Participant

    Hi, so nice to ‘see’ you all again ))) You heard of me in 2010, since then I was taking Mino brand capsules then generic pills and now I think I will also need to switch to doxy, if its more easily available. So, I’ve been on Mino since 2010, 14 years. taking it three times a week (started with 5, then reduced in 2 years to 3). I’m good, just have to say I’m a little stiff in the mornings – since I hit the age of 40 (now 47). But I find its a case with all people of my age )) Maybe a bit more of an issue for me than for the majority of people of my age… Lower back pain is most prominent but it is also where I had my gymnastics injury, so I think it the combination of age, sports injury and SS. Otherwise, all fine, thank you and it’s also very nice to see that you are also fine. You know, at one point, I did not take meds for about 10-14 days as they could not supply it, but all good, nothing happened.I went back to taking it 3 times a week as soon as I got hold of them. I will continue with 3/week. I do yoga ad pilates 4 times a week and walk a lot on weekends (up to 15-20K steps) – up and down West Sussex hills )) Glad to hear from you all ))

    #467819
    aynurrzepa
    Participant

    Hey Maz! Nice to hear from you! Glad you are here on the forum – I hoped you were ))) Yeah, all good, kids growing. Daughter is 18 ad accepted in Med School here in the UK. Son is 16 and ‘finding himself’ )) Hubby is right here by my side, staying very active together…

    #467825
    PhilC
    Participant

    Hi Aynur,

    I was recently thinking about you and wondering how you are doing. Thank you for coming back and letting us know that you are doing well.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #467826
    aynurrzepa
    Participant

    Thanks Phil! So nice of you and yes, I always think about you guys as well, about about this forum, how everyone is doing… and I finally got around to post my update. I know I should have done it earlier but there are so many things going on, I struggle to catch an end of a thread sometimes )))

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